Why Some Patients Don't Respond to Elmiron

[icnmgrjill]

Pentosan Polysulfate (aka Elmiron) has always had a poor bioavailability. Researcher Deborah Erickson and colleagues now suggest that this is due to the molecular weight of PPS.

Read more at: http://www.medicalnewstoday.com/medicalnews.php?newsid=48765

[ICLori]

So there is a very good reason why Elmiron did not work for some of us - because basically none of it gets into the bladder. If that is so, then why does it appear to work for some - placebo effect or...? Scratches head.

Does this mean it would be wiser to use this as an instillation?

Blessings,
Lori

[ICLori]

P.S. I find it interesting that they write, "the majority of patients do not improve on..." I remember not too long ago, Elmiron was considered to be the best thing that ever happened to IC patients - one uro told me "Elmiron ALWAYS works." Now urologists seem to be of the opinion that it does not work for the majority of patients. What a switch!

[green_the_fish]

Good question, Lori :hmm:

Do you think it could have something to do with metabolism? Like, different peopel have inherently different metabolisms, and so their bodies will process the Elmiron differently...? Perhaps those with fast metabolisms process it too quickly for sufficent gastrointestinal absorption to occur?

Okay, that was a complete guess, so it's probably wrong. But I really would like to know why it works for those whom it helps. I, for example, feel that Elmiron has helped me, in combination with Hydroxyzine and Urocit-k. However, I'm not sure what role Elmiron itself played, since I started Hydroxyzine and Urocit-k at the same time that I restarted Elmiron. Maybe Hydroxyzine and Urocit-k were did most of the hard work, and just took Elmiron along for the ride :D

It does seem like it would work better as an instill, though, doesn't it? They should do a study of oral Elmiron and placebo instill vs oral placebo and Elmiron instill. That would be interesting.

[ICLori]

LOL - I'm just glad that I won't be called a liar or crazy anymore when I say that Elmiron didn't help me. Of COURSE it didn't help me - it doesn't help the MAJORITY of patients, doctor!

Blessings,
Lori

[green_the_fish]

LOL, yeah...

Lori, I say you print this article out about a dozen times, go buy some fancy envelopes, and send a copy to each of your old uros :lmao:

[ICLori]

That's a VERY good idea! The same uro who told me "Elmiron always works" also told me "IC is not a painful disease." Wonder what he thinks now that IC is being called "Painful Bladder Syndrome!" Wonder if he's telling any of his new patients that IC isn't painful and that Elmiron always works....

Sigh. You trust doctors to know what they are doing...but sometimes they let you down.

Blessings,
Lori

[sacausa]

My new urologists doesn't put any patients on elmiron, at the very least she doesn't recommend it (I'm sure if someone really wanted to go on it she'd let them, just like she let me try cytotek and it worked).

I mean even in the elmiron patient insert it says that it works in something like one third of patients.......so for the majority of patients it doesn't work. That's not very good statistics if you ask me.

Is there anything they can do to correct this problem with elmiron? Are they going to start injecting it into us like they did with the rats?

Maybe I've become disillusioned but I highly doubt Elmiron works in anyone, and in those it supposedly did work.. I think that was spontaneous remission.

Plus the side effects are HORRIBLE, I had major hair loss and stomach ulcers on Elmiron as well as nausea etc... which is comparable to side effects of chemo. Give me a break!

[ICLori]

Sacausa, I think this is a very unpopular opinion, but...I'm with you. I truly think that when Elmiron works, it's really due to something else, spontaneous remission, or even placebo effect. I know that there are many, many, many people here who firmly believe in the efficacy of Elmiron.

Blessings,
Lori

[ICNDonna]

As I recall, at the time it was approved by the FDA it was showing effectiveness in something like 38% of IC patients --- not a terribly high percentage, but when there wasn't anything before, I think it's still an improvement.

There are some people out there who are living normal lives as a result of taking elmiron. Unfortunately, I am among those who couldn't take it. I've been thinking of giving it another try, but haven't discussed it with my uro yet.

Donna

[sacausa]

I know it's not a very popular opinion..... but the drug isn't that efficient. I think the drug companies are just taking advantage of DESPERATE people that will try anything to get rid of their frequency/pain. It just gets on my nerves because with Elmiron you're just trading in one set of symptoms for another (and that is if it works...). I cringe when I read about "newbies" asking if their diarrhea, stomach pains, hair loss etc. is "normal."

For those that it does work for, great.

I only wonder if according to this study I only absorbed 2% or so of this drug, and I had such horrific side effects...... How bad would the side effects have been if I absorbed 100% of this drug? Scary.

[Katrina]

I am very curious if they have any theories as to why it did help some??? I mean if they could figure that out maybe they could develop a better drug! I am one of the very lucky ones that Elmiron helped....and the huge improvement was worth it. Very few medications work for the majority of patients so I find it odd that a doctor would say that a medication works for all...Lori, I think it is that doctor that may be liar or crazzy...certainly not you!!

Sounds like a good questionaire on those Elmiron did work for....to find out what we have in common besides that?

[ICLori]

I think it would be a wonderful idea for the company to find out why it does work on some - see what the various factors are. That would help in figuring out which patients to prescribe Elmiron for.

What makes me mad is how incredibly expensive this drug is, coupled with the fact that you have to take it for at least six months before you call it quits (or a year, or longer, as many here will tell you.) Six months or a year of an expensive drug...when it doesn't work, it's nothing but a major rip-off for the patients. I'm mad on behalf of any patients who scrimped and saved in order to buy the drugs, and found that it didn't work for them.

The most recent study showed a REALLY dismal success rate of Elmiron after six months (the time the makers of Elmiron insist it reaches maximum effectiveness) - only 19%! If you look at any studies, that's about what the placebo rate is. The NIH study on Elmiron was discontinued because it was shown in the study that it was not statistically different from placebo.

I personally think a lawsuit against the makers of Elmiron is called for, with a rebate for anyone who has not been helped by Elmiron. Those earlier studies showing a great effectiveness rate were studies done by the company - not exactly impartial studies. I smell a rat!

Just my personal opinion, of course.

Blessings,
Lori

[sacausa]

I think you're right Lori.

Katrina, did you only take Elmiron without changes to your diet or other medications as well?

[ICLori]

What makes it so difficult to evaluate any medicine with IC is that our symptoms naturally wax and wane, and often IC'ers go through brief periods of complete remission, as well.

I guess that's why they have the placebo in studies, too, to try to figure that part out...so when you read that Elmiron helped 19%, that sounds pretty good, at least worth a good try, until you hear that the placebo rate is similar to that....then you have second thoughts.

I wish that they would (very soon) have some very large, long (at least one year, preferably 2 or 3 years) studies on Elmiron, and studies that are not supported in any way by any drug company, either the makers of Elmiron or competitors. So that we could be sure things are impartial. I wish that they would involve hundreds of IC patients, and would make sure that nothing changed during the course of the study - no other meds, no changes to diet or lifestyle habits, etc. It would be really hard to set those studies up, but I would like a more definitive answer to be available to us.

If the newer studies hold up - if Elmiron is found to be not much more effective than placebo with larger studies - then I think for certain it should fall out of favor as an IC treatment. It should always be available to anyone who wants it, but if it truly has such a low effectiveness rate, barely over placebo, then it shouldn't be a mainstay of IC treatment.

I am glad to hear that your urologist does not prescribe Elmiron routinely. I will be very happy when I hear that is the case with most urologists.

Blessings,
Lori

[callie0767]

wow a rebate .would that apply if it was 11 years ago? just kidding.
courtenay

[vm]

I am one who was helped by Elmiron and had no side effects and still haven't after almost 5 years on it. I eat whatever I want, have sex, exercise, etc., etc.

I don't understand enough about the study to really have an informed opinion on it - I can only speak about my experience. Since so little appears to be absorbed then it makes sense why it can take 6-12 months to build up and really make a difference in symptoms for those that it does help. Also may explain why it seems to help milder cases more than the severe cases.

I honestly don't think I have been in a sponaneous remission for the past 4 years. I also don't think it's placebo effect b/c I tried about 4 drugs before Elmiron and none of those gave me this good of a placebo effect. :lmao: I understand that it may be the case for some, but I don't think it is the case for me. In fact, if it is placebo I don't even care - whatever works. If I can be comfortable and enjoy life the way I did prior to IC - it really doesn't matter how it happened. If I had to drink mud 3 times a day to feel the way I have felt the past 4 years I would be sucking that stuff down like there was no tomorrow. :)

I am glad this study is vindication for those of you with uros who insisted Elmiron works for everyone - especially since we know on these boards that's certainly not the case.

[StephanieS]

I was just taken off elmiron after 6 months and moved to DMSO. Why is Canada so behind the times? Most uros in the US don't do either. Elmiron did not do anything for me except stomach cramps and bowel problems and muscle pain.

[ICLori]

I'm sorry that Elmiron didn't work for you. I hope that you find something soon that does work well for you. I know how frustrating it can be.

I really kind of think that Elmiron tends to work better for people with mild to moderate cases of IC, rather than severe. Just my impression from what I've seen here.

Blessings,
Lori

[vm]

The more I read about the findings ---- isn't this study just explaining why so little of the Elmiron makes it to the bladder when taken orally? We already knew not much makes it to the bladder --- the study is just telling us WHY that is, right? And it is re-explaining that it does not work for some patients b/c so little of the Elmiron makes it to the bladder.

The researchers are saying that the low molecular weight fraction makes it to the bladder in VERY small quantities while the high molecular weight fraction doesn't get there at all. Am I understanding this correctly??? Sarojini - where are you?! ;)

Question, though: is the high molecular weight fraction more effective than the low molecular weight fraction????

[sacausa]

Molecular weight is the sum of the atomic weights of all the atoms in a molecule.

so yes

[vm]

Yes it is more effective b/c it is higher weight? How does the weight effect the efficacy?

[sacausa]

take water for example

water is H2O which for instance has a molecular weight of 2
so 2H2O is 4 and so on

an entire glass of water would have a molecular weight of say a million (just guessing)...........so if you want to hydrate yourself, you'll have more success with water that has a molecular weight of a million versus say a hundred.

hope this explains it.........

[ICLori]

So that might explain why it seems to be more effective in milder cases...people who only need a little help - because only a little help makes it to the bladder.

I'm thinking that there will be more of an interest in using this intravescally rather than orally, after this study...

I would be very curious to know what happens in studies where it's instilled instead of taken orally...

Or, another idea...could Elmiron be combined with something that would increase absorption?

They had that problem with Cyclosporine-A, too - not enough of it was being absorbed by the body. So they reformulated it with castor oil and some other stuff, other oils and they got Neoral, which was absorbed much more readily by the body.

I wonder if something like that could be done with Elmiron, so that it would be effective in more cases?

Blessings,
Lori
P.S. I still think these drugs ought to come with a money-back guarantee!

[vm]

When I was looking for info on this study I did find one by the same researchers and they were looking at adding something to the PPS (Elmiron) to help - I think it was some sort of lactose. I'll try to see if I can find it again. I think the study was published in April of this year.

[vm]

Here it is:


Saccharide Complexes Improve Binding Of Pentosanpolysulfate An Heparin To Bladder Epithelium

UroToday.com - Anionic glycosaminoglycans including pentosanpolysulphate (PPS) and heparin show weak or no staining of the bladder epithelium and thus do not bind to human or rabbit bladder epithelium in any appreciable amounts. Muthusamy and colleagues attached galactosyl residues to PPS and heparin in an effort to encourage binding to the endogenous lectins in the bladder and thus possibly improve efficacy of glycosaminoglycan (GAG) therapy.

The mode of action of the exogenous glycosaminoglycans is unclear, but is presumed to be the coating of the bladder surface, thereby replacing the missing or nonfunctional GAG found in the normal bladder epithelium. Possible reasons for their limited efficacy include low bioavailability (with oral administration) and absent or minimal binding to the bladder (with oral or intravesical administration). In their study, the highly anionic polysaccharides such as hyaluronan, pps, and heparin do not bind to bladder surfaces, and in the in vitro study only 2-4% of these polysaccharides associated even temporarily with the rabbit epithelium, and the major portion was removed by rinsing.

They report that the binding of heparin and PPS to human and rabbit bladder increased significantly by covalently attaching lactose to the molecules. PPS and heparin modified by attachment of lactose, as well as the asialo mucin glycoproteins, bound strongly to human and rabbit bladders. This binding is mediated by the interaction of the endogenous bladder galactins and the non-reducing galactose terminals in the lactose attached to the anionic polysaccharides or the asialoglyoproteins. They surmise that it is possible that lactose-modified PPS or heparin might be more effective in the treatment of painful bladder syndrome.

This is a very interesting contribution to the literature, as it demonstrates a possible reason why oral PPS and intravesical heparin treatment of painful bladder syndrome has proven so frustrating for patients and clinicians, and how modification of the molecules might improve treatment results if the if the underlying etiologic theory on which the treatment is based is actually valid.

By Philip Hanno, MD

Reference:
Urology 67:209-213, 2006 (January)

http://www.medicalnewstoday.com/medicalnews.php?newsid=41754

[Janie Miranda]

I'm one of those who elmiron has really helped and thankfully I had no side effects at all. I know it was the elmiron because I didsn't start taking any other drugs for about 6 months into the elmiron and then i started the hydroxyzine which seemed to help me too. I was on double the standard dose of elmiron for over a year so I'm thinking that might be why i saw an improvement.

[ICLori]

Excellent, thanks for this study! THAT might explain why Elmiron didn't work for me - it didn't adhere at all to my bladder epithelium because I don't drink milk!

Maybe those people who drink milk (lactose) have better luck with Elmiron? My body just didn't have any lactose at all in the system to work with.

Well, I'm going to tell everyone taking Elmiron, to be sure to drink milk every day too!

Blessings,
Lori

[Janie Miranda]

Wow, great idea Lori. I think I'll start actually taking my elmiron with a small bit of milk.

[sacausa]

I took it 3 times a day with a glass of milk each time. Still saw no improvement after staying on it for a 1.5yrs

[sacausa]

Want to add that I actually emptied the capsule into the glass of milk and mixed it in.

[vm]

I'm not sure that drinking milk would be enough to effect the change - certainly wouldn't hurt, but I bet they have to do something clinically to the PPS to add lactose in a way that helps the med. Then again, I have no clue - I hated science in school and didn't take any advanced chemistry at all! ;)

[ICLori]

Maybe there is also a chemical difference between us all - maybe some bladder epitheliums are "stickier" than others and the PPS adheres better to some.

I dunno. I know that I cringe whenever I read about someone trying Elmiron for the first time and they talk about how they are having to go without food that they'd like, in order to pay for the drug. It takes every power I have not to write to them, "you know, you only have about a 19% chance of this working for you, (and placebo effect in most studies is 15% or higher) you might as well just take the much cheaper glucosamine/MSM pills available, they do about the same thing as Elmiron...then when it doesn't work, you haven't sacrificed as much...."

But I know how I am, if something has even a 10% chance of working, I'll try it, I figure others are that way too.

[BeachBaby]

:loco:

Since we have dispensed with the Just venting board, I hope to add to this discussion w/o sounding as if I am trying to get into something. My experience is pretty simple, not reading studies or studying data...just knowing what does or doesn't work for me.



Maybe I've become disillusioned but I highly doubt Elmiron works in anyone, and in those it supposedly did work.. I think that was spontaneous remission.

I find this to be a pretty "general" opinion, and based on my own experience, it was anything but spontaneous. I went into the whole Elmiron experience full a fully blown knowledge that the success rate at that time was about 38% (2002). I truly felt I had nothing to lose, as I was despondent by what was happening to my body.

I do happen to be in a "remission", and Elmiron was the only Rx I used. I even drink coffee!


I know it's not a very popular opinion..... but the drug isn't that efficient. I think the drug companies are just taking advantage of DESPERATE people that will try anything to get rid of their frequency/pain. It just gets on my nerves because with Elmiron you're just trading in one set of symptoms for another (and that is if it works...). I cringe when I read about "newbies" asking if their diarrhea, stomach pains, hair loss etc. is "normal."


I happen to be a severe GI patient, you name it I have it. LONG before IC. At one point I had to use nitro glycerin patches just to keep my throat open to swallow. I worked very hard with my GI team to overcome so much of this.

If Anyone might be subjected to the side effects mentioned above, I am thinking it might be me. I was seen by an very prominent IC researcher/Dr who increased my dose to 600 mgs. I am now down to 100-200 daily. I bet I could stop, but I don't. My biggest issue w/Elmiron was the whole empty stomach thing. This same Dr suggested I just eat as I needed to and not worry about the dosing. Works for me.

I guess what I would like to say here, and especially to the newbies who may be alarmed by all of this...I think that the success/failures of Elmiron are just as varied for so many, as are the complexities of IC to begin with. We come here and speak so often of the huge amount of differences between us. I think Elmiron is one to be decided on with your health team. For some, it will never work, but I know I am not the only success story here. How long that might last remains to be seen, but I for one am glad I gave it a shot and knew long before it was prescribed that it could take up to a year to make a difference.

I don't miss the "ME" prior to the Elmiron. For those who cannot take it, and I know there are many and for a variety of reasons, I hope you are finding other treatments that work.

I don't/didn't read the data. I wouldn't get it anyway. I am just speaking from my own experience, and know from 4 years on the boards that we are all a huge science project. We have a LONG way to go before there is one thing that will help us all. I hope everyone here finds something to help them, I still remember the sheer frustration of my symptoms.

I understand everyone's passion and opinions, I just wanted to add my own.

[Janie Miranda]

Hmmmm. I just thought of a reason why it might work for me and not other IC folks. My main symptom was pain so I only have frequency and urgency during a really bad flare up. This means I usually don't have trouble holding my urine 3 hours or more. I wonder if just because of the fact I can keep the medicine in the bladder longer increases the chance it can help me. I remember now that Dr. Parsons (in one written interview) was telling people that if you drink too much water it wouldn't work as well - I don't know if this is because it diluted it or if just cause the more water you drink the more often you "go".

[Ginny]

I am with Donna. The company that makes Elmiron has always stated that it only helps 37 to 38% of the people taking it.

Ginny

[mare mare]

Hi everyone!
I was on Elmirion 100 mg 3 x a day for a little over 2 years! I saw no improvement. I did loose more hair during that time but I also found out that I was anemic! (For those who are taking Elmirion and loosing extreme amounts of hair, ask your Dr. to check your Iron!)
Anyhow, I agree with Lori that it depends on how serious your IC is. I finally found out recently (after almost a 4 year journey:mad: )that the linning of my bladder is extremely irratated!
If you suspect you have IC and your insurance covers a cysto/hydro/biopsy, it just makes sense and it would save a lot of time and $$$$ to do this procedure early in the pre-diagnoisis to eliminate other uro problems or reveal the level of IC so proper treatment can be given. With so many being diagnoised with IC, It seems like some research needs to be done to see what is causing this disease! (I've always suspected drinking chlorinated water)
Mare Mare :grouphug:

[sacausa]

Hmmmm. I just thought of a reason why it might work for me and not other IC folks. My main symptom was pain so I only have frequency and urgency during a really bad flare up.

My only symptom is also pain and it still didn't work for me. I also got a severe stomach ulcer while taking Elmiron and for those that don't know, ulcers can be life threatening if they start to bleed. If I knew that before, I would not have risked my life for a drug that fails many more times than it works. But that's just me.

[Katrina]

Katrina, did you only take Elmiron without changes to your diet or other medications as well? I definatly changed my diet I did try an antihistamine at the same time but that turned out bad for me....so it was pretty much on its own for quite a while. One thing I did differently than many is that I put no effort into making sure I drank with it and avoided food near it since my body made that pretty much too difficult. I do not know if that made a difference at all.

[Katrina]

Jannie you may be onto something....my frequency wasn't too high....certainly not compared to my pain. I was pretty used to always "holding it" so I know I didn't go as often as my body wanted to.

And Betsie....and you and I both are severe GI patients and both responded to Elmiron...wonder if there is something there?????



I am very sorry this drug doesn't help all. None the less when it does work the difference is huge!


I have had some pretty bad ulcers but haven't had one while on Elmiron. Yes one of my ulcers would have killed me....I had emergency surgery.

Please remember gang that just like before we are all different and respond differently to different things.

[green_the_fish]

I keep chewing over the theory that this may be partially due to differences in drug metabolism. Maybe only between 19% to 38% have the correct metabolism to process the Elmiron correctly. I would assume those who metabolise drugs more slowly would have the advantage here, as Elmiron would have a better chance of building up in their bodies. Drug metabolism is influenced by genetics, so maybe most of us just aren't wired up right for Elmiron. Another factor that affects drug metabolism is age. Older people have slower rates of drug metabolism, which, in my opinion, would give them an advantage when in comes to Elmiron. Hmm, maybe I should make an age poll in the Elmiron section :hmm:

BTW, I really love the discussion we have going here! There are so many different theories and opinions on this thread; it's really facinating!

[sacausa]

Green- it could be that it just works for the older crowd

What scares me is that this drug DOES cause stomach ulcers. Which CAN kill, and the MAJORITY of people affected by IC are older and often are taking blood thinners, daily aspirin, ibprufen for arthiritis etc....... and if that ulcer does rupture, they will be dead before they get to the ER.

Would you take a birth control pill with a 38% or 18% success rate? I think not. Seriously some cancer treatments have a better success rate than that!

No matter WHAT people are saying, that study is saying that only 1-2% of the drug is reaching the bladder. PERIOD. Would you want chemo if only 1-2% actually reached the cancer cells? Would you want to take narcotics for your pain if only 1-2% was going to reach the affected area?

For that matter, would you pay to get your hair dyed if only 1-2% of the dye is actually going on your hair!!! For goodness sake!

Gastrointestinally I have always had superb health. I had a colonoscopy/endoscopy and other tests done which all came back perfectly normal. STILL I GOT A STOMACH ULCER.

For those who do have GI problems and didn't get a stomach ulcer... Are you on a special diet for your GI problems? Do you take medication for your GI problems? Do you avoid anything because of your GI problems? Because that could have lowered your risk of developing an ulcer while on Elmiron.

[ICLori]

I've probably replied far too much already to this thread, but wanted to say, I think I'm pretty old at 45 - but Elmiron did not work for me.

I am curious, why do some people take Elmiron for a time, then go off it entirely and stay in remission for several years? Does the Elmiron cling to the bladder that long? Or is there any possibility that they perhaps coincidentally went into a remission while they were waiting for the Elmiron to work (taking it a year or longer, in which time a remission could certainly occur) and that remission lasted even when they stopped Elmiron? I'm confused by that, because the makers of Elmiron insist that in order to maintain its effects, Elmiron must be taken every day. That you can't get remission by taking it awhile and then stopping it forever. So...makes me wonder, you know?

Again, I guess I wish there were more studies.

Blessings,
Lori

[ICLori]

P.S. I need to say something here. I have been basically told by some on the boards that I am an idiot for taking Cyclosporine-A. "It's dangerous" they all say, despite researchers claiming CyA is both safe and effective. I want to say that I really resent that. If Elmiron or any other traditional med had worked for me, I would not be in the position I am in today, of taking CyA. I feel as if there is a lot of smugness on the boards, people saying, "well, I'm SMART because I'm taking the traditional IC meds....only you dummies take those BAD DANGEROUS drugs." For one thing, even Elmiron can be dangerous, by causing ulcers. For another, no one else here is in my shoes - you have no idea how bad my IC is, and how motivated I am to get better. And...knock on wood...the CyA appears to be working for me now.

Researchers tell me that CyA is both SAFE and effective for treating IC. You all can have your opinions about it, but I'm ignoring them, because honestly even though some of you are nurses, I still think you don't know as much as the researchers do about this medicine. I feel as if there are people putting us down for trying non-traditional therapies on these boards...and I wanted to say, maybe you guys are wrong, you know?

Blessings,
Lori

[Angeles]

I think Elmiron is working for me, at a very slow pace. I also added Lyrica last week and I noticed improvement with it in one week, less pain and less frequency. I know I won't take Elmiron for a long time and I don't want to take Lyrica for a long time either so I'm still opening my eyes to what other treatment I can try.
Elmiron already gave me a few GI problems (and I already had gastritis a few years ago, before IC that healed, right before I started Elmiron! (Feb 2006)
I tried Elmiron without the capsule and that didn't work for me (bad stomach ache). Now I take it inside a gelatin capsule and that helped, with less frequent stomach pain. I also take carafate once or twice a day (stomach coat) and nexium 40 mg in the morning everyday to reduce stomach acid (been on it for 3 yrs now). Sometimes Ranitidine as well. My gastronterologist doesn't like Elmiron at all. At one point I had blood in the stolls, but it was a one time deal only (I hope).
I read some people take it with food (after being a while on it) I don't know it the drug is absorved at all that way, but maybe I'll try it that way to protect my tummy.
I'm sure Elmiron actually helps some people, and that's a great thing. I wish it was a more effective drug with less side effects.

[vm]

I think it is equally important that the impression isn't created that those of us who take Elmiron are idiots. I have trouble understanding the intense negative reactions to Elmiron on this thread. :confused: I understand being mad at doctors who swore it would help everyone, but why so much anger about the drug in general?

I've not noticed anyone on this thread who is taking Elmiron trying to tell anyone else theymust take Elmiron or that it will help everyone who takes it. We've acknowledged that it doesn't help everyone and that a small percentage reaches the bladder - thus the reason it takes so long to be effective and may be why it seems to mostly help those with mild to moderate IC.


Would you take a birth control pill with a 38% or 18% success rate?

B/c the failure rate would lead to a human life being created, no. With Elmiron I would take my chances and lose only time if it didn't work and then move on to other treatments. Fortunately for me it has worked.


No matter WHAT people are saying, that study is saying that only 1-2% of the drug is reaching the bladder.

Who said more than that reaches the bladder on this thread???? I missed it apparently.


Would you want chemo if only 1-2% actually reached the cancer cells?

If the 1-2% did the trick as Elmiron has done for the IC pain many of us had, absolutely!


Would you want to take narcotics for your pain if only 1-2% was going to reach the affected area?

If the 1-2% did the trick as Elmiron has done for my bladder discomfort, yep!


For that matter, would you pay to get your hair dyed if only 1-2% of the dye is actually going on your hair!!! For goodness sake!

If the 1-2% did the trick as Elmiron has done for my bladder discomfort, you bet!

Apparently 1-2% does help some people. Does it help EVERYONE? No.


What scares me is that this drug DOES cause stomach ulcers.

Does or can?

For what it's worth, I've never knocked cyclosporine or cytotec. If it works for you I am thrilled beyond words. Why would I want to knock a treatment that is helping others????

[vm]

I'm sure Elmiron actually helps some people, and that's a great thing. I wish it was a more effective drug with less side effects.

I do, too. :( I wish there were more options in terms of treatment available and I wish the magic bullet for all of us could be found. In time, I believe it will, but until then we muddle through and hope the researchers keep up all that they are doing and that they find an answer soon.

Don't give up hope! I believe you will find something - it can just take a long time sometimes. :( :kissing:

[ICLori]

Kim, I appreciate that you never put down Cytotec or Cyclosporine- I was reacting to other threads over the past couple of weeks where I felt people were calling me an idiot for trying Cyclosporine-A. I got this, "OH, I'D NEVER do THAT, everyone who tried CyA dies of CANCER right away..." (I'll bet sunshine causes more cancer than CyA, LOL...) And of course, most of the people looking down on me for trying CyA, are sitting comfortably with their own treatments now and have no real symptoms, so of COURSE they wouldn't want to try CyA. They've already found their miracle!

I don't hate Elmiron - I'm just disappointed that it didn't work for me and doesn't work for the majority of IC'ers, and I wish that it had a money-back guarantee. I am happy for those of you who have gone into remission, (but I still don't understand why the remission would last for years after stopping Elmiron - unless the Elmiron is alot more persistent in the body than previously thought?) but I'm also angry on behalf of myself and any other people, for whom Elmiron did nothing. Money was wasted in some cases, time was wasted in all cases, and some people suffered side effects and didn't even get any benefit after suffering. On behalf of myself and all those people, I want to take a bottle of Elmiron and kick it across the room, LOL!

I wish there were some way of knowing ahead of time, whom Elmiron would help. That would cut down on the number of failures. And I wish there were a money-back guarantee.

But I hope it never goes off the market, because I know that it's important to quite a few of you guys, to be able to obtain it.

Blessings,
Lori

[vm]

Believe me, if I had exhausted all treatments like you have, Lori, and was still in discomfort I would try cytotec and cyclosporine just to see if they would help. Absolutely! Even if there was a low rate of success with them. I would never discourage someone from trying something that might help them as long as it was safe.


I wish there were some way of knowing ahead of time, whom Elmiron would help.

Me, too. :( And I don't blame you for feeling so frustrated at the money spent on it and for feeling led to believe by your doctor that it would help anyone who took it.

[sacausa]

I didn't intend to step on anyones toes.

It's just ridiculous that the one and only drug that was specifically made for the treatment of IC has such low success rate, and that so little of it actually reaches the bladder. I also find it saddening that this is often the first treatment tried by people affected by IC and often it does not work for them and they become very discouraged. I've seen it so many times that if Elmiron doesn't work for someone, they believe that they've tried "everything" and are at the end of their options.

I just wish that there would be more research done on Cytotek and Cyclosporine-A and that people would be more open to trying it. Also that the people who haven't tried these drugs not bash them because they can potentially hinder someone else from trying them and that could be their cure. I have tried Elmiron, it failed me. I was only 16yrs old when I started taking it and for a 16yr olds' long hair to start falling out is pretty traumatic. Furthermore developing an ulcer at 16yrs old on top of my other health problems was not fun. So yes I am mad at Elmiron, it stole a year and a half from my life because I was so desperate for it to work. If I was aware at the time that only 1-2% was actually reaching the bladder I would not have continued on with it. I could have spent that 1.5yrs trying other treatments instead of watching my hair fall out and losing weight because I could barely eat with my stomach ulcer. I'm now taking Cytotek and it's been a miracle for me, it's the first time in 3yrs that I am able to get through my day without any pain medication. To me that's a miracle. However, I wasted my time during my junior and senior years of high school on Elmiron. That drug robbed me socially, physically, and emotionally. IC didn't rob me, Elmiron did. If it weren't for Elmiron, I would have started trying other drugs sooner and I would potentially have had a much more normal high school experience. Instead I was either "drugged" from pain medications, or curled up in a ball for days at a time. I am mad at Elmiron. I could have had much more normal teenage years if I had tried Cytotek sooner. In fact, I went against the grain by trying Cytotek since people have such strong negative opinions against it. Maybe because I devoloped this disease so much younger than the majority, I feel more angry and robbed. Most people on this board had fairly "normal" teenage years etc. Not me. I would have had a much better time if I had started Cytotek sooner. I am royally ticked off. :cussing: I wish people would be more open to other treatments and that all the focus wouldn't just be on this on Elmiron. I hate Elmiron. If it worked for any of you, great. It didn't work for me. I wasted my time. It robbed me of my highschool experience. I am mad at Elmiron!

[vm]

What an awful way to spend your high school years. :( I'm so sorry that it didn't help you and that time was lost while you waited for it to help. I'm glad cytotec has helped so far - it must be a huge relief for you.

My concern on this thread has been new folks being scared away from Elmiron completely. There really are people out there who don't get the side effects and who are helped tremendously by it. The same way you about cytotec is how many of us feel about Elmiron - it gave us our lives back.

I agree more doctors should be made aware of the real success rates with Elmiron - totally. And I hate that the cost is so high. But I don't want folks for whom it might help to be too scared to even give it a try ----- b/c it might help them! What if Elmiron is their miracle like cyctotec has been for you? You see what I'm saying?

[BeachBaby]

Lori,

I too was worried when you mentioned the comments about your CyA and cytotec treatments. I have always let you know how much I pray it will work for you, and I do understand how frustrated you are. I would be too. The time I spent w/o relief after my IC onset was brutal.

But I too just want elmiron to be validated in that even the small percentage it helps, we are so grateful and very aware of our good fortune. In a perfect world it would just fix IC, right?

(the rest of this post is a general response, not to Lori persay)

But what truly has me alarmed is this ongoing discussion that has entered GI health. And I quote...


What scares me is that this drug DOES cause stomach ulcers. Which CAN kill, and the MAJORITY of people affected by IC are older and often are taking blood thinners, daily aspirin, ibprufen for arthiritis etc....... and if that ulcer does rupture, they will be dead before they get to the ER.

Gosh!!!! I would sure like to see the data that shows that to be true. I have had ulcers, they are horrid, but not while on Elmiron. I am just amazed at the severity of this statement, and worried that many will stop treatments w/o reason.

I didn't waste time, money etc when taking Elmiron. I was fully aware of all the side effects, the success rate and anything else known and documented at the time. If it hadn't helped me, I at least would have known I gave the only dedicated IC Rx yet to be released a 100% effort.

At the end of the day, I just want what I think we all want. Remission (a cure if it ever comes to that), support regardless of the path I choose with my Drs to treat this, and last but not least...for people to remember that Elmiron is NOT the only drug on the market that isn't perfect. In fact much of what we take is ridden with side effects, and yet we still have hope. I am talking of all health concerns, not just IC. Most of my GI meds have GI side effects listed as possible problems...honestly where and when do we decide who has made the perfect choice.

Can we PLEASE just support each other and hope the info that circulates here is only as good as following through with your Drs and YOUR health issues. I try really hard to post in support here, and when I am successful with a drug others aren't I just want them to also be supportive of me. The drug and it's name isn't the issue, the support and accurate data is huge!

[ICLori]

That's a great post, Sacausa. Actually, this whole thread is great. I'm glad we can talk about our experiences and feelings openly.

It's hard not to have strong feelings one way or another about Elmiron, because either it works or it doesn't - and if it works, naturally the person likes Elmiron and is grateful, but if it doesn't work, that's wasted or stolen time like you said, and we really resent it and are mad at Elmiron.

I look back on my year and a half on Elmiron as completely wasted time that I was in pain and miserable. A year and a half of my life gone, because people kept insisting that if I just stayed on it long enough, it "had" to work. They didn't even believe me (the people here on the boards) when I insisted that a voiding diary showed I was worse off ON Elmiron than OFF it. They said I needed to stay on it longer and increase the dose. I was already taking 3 capsules 3 times a day (9 capsules) and had been on it 1 1/2 years. The general consensus of this board, except for Kim I mean, has often been, Elmiron WILL work if only you take enough and stay on it for many, many years. There are truly people on these boards who refuse to believe that Elmiron doesn't work for some people. And I have felt frustrated by that experience, to be honest.

I try to be balanced when I talk to people on here about Elmiron. I encourage them to give it at least a year, to be fair to Elmiron. I warn them that it can take a long time to start working, and that it doesn't work for all Ic'ers. I wish them good luck with it. But in the back of my head, I am thinking, the odds are, this person will fail on Elmiron, or rather Elmiron will fail this person. And then they think, as S. said, "I've tried THE drug for IC, and it didn't work, so now I have to give up and hope to die soon, there is nothing else."

I too have seen a lot of negative sentiment against anything somewhat non-traditional, whether it's nerve stimulation, herbal therapies, Cytotec, Cyclosporine-A, Adderal, Xolair, or what have you.

In my mind, it's as if people who are already comfortable, look at these new treatments and say, "oh, those are BAD, BAD, BAD, you newbies here, do NOT try any of these." And sometimes the people are swayed by the general consensus, and end up saying, in effect, "I tried the three 'good' IC treatments and now only 'bad' treatments are left, and the three I tried didn't work for me so that means nothing will work for me..." And they give up and accept a life of debilitating symptoms, because they are convinced that they shouldn't try those "bad" treatments. I think that's a tragedy, when that happens.

I wish that people would try every single available IC remedy, until they find what truly works for them. I'm disappointed that Elmiron doesn't have a higher success rate, and I'm personally mad at Elmiron because of my own experience, LOL, but I always tell people, it's worth a try. I also try to tell people, if it doesn't work, don't give up, there are other things to try....

Blessings,
Lori

[ICLori]

Betsie, you make a great point of not wanting to scare the newbies into not trying Elmiron. I don't want to do that! I just wish...I wish Ic'ers would not give up until they find their miracle - whether that miracle is Elmiron, Cytotec, Cyclosporine-A or another med or procedure.

I think it must be the worst thing in the world, to be in a position where you are in terrible pain, but also afraid that you will be worse off by trying a treatment. It's like a da##'ed if you do, da##'ed if you don't situation.

I don't mean to scare people off Elmiron. It's always worth a try. But I hope they don't lose hope if Elmiron doesn't work for them - there are other meds worth trying, other things worth trying!

Blessings,
Lori

[vm]

Great, great, great discussion here. I think we're seeing good info from all points of view. :)

I really see your pont, Lori, about people trying Elmiron and then if it doesn't work feeling like nothing will help them b/c it's the big treatment you hear about. I'd never thought of it that way before.

[sacausa]

But I hope they don't lose hope if Elmiron doesn't work for them - there are other meds worth trying, other things worth trying!

I think you got my point. I just wish doctors and other IC patients would inform newbies of ALL their options. I think Elmiron is worth trying, but if it doesn't work after 6months...I don't want people to be discouraged or to stay with it for years in hopes that it will one day work. Life is so short and everyday is valuable, thus my hope is that all the options (mainstream or not) would be available to IC patients. New IC patients should be aware of all their options from the beginning and they should be in charge of their treatment and their lives. What medication you take is a personal decision. If you research Elmiron and Cytotek, you will find that Cytotek actually has less side-effects than Elmiron. It has also been around much longer so we know about the long term effects or lack there of.

I think people should try Elmiron. However, I think from the beginning the other alternative therapies should be made readily available to the patient. I also think that it should be the patient's choice whether they want to try Elmiron first or if they'd rather try an alternative therapy. Lastly, I think it's a bad idea to stay on Elmiron for longer than 6months if you see no improvement... that would be a waste of time.... time that could be spent seeking another treatment, and perhaps getting their lives back.

I'm tired of reading peoples negative comments on the alternative drugs... I'm headstrong and think for myself. There are some people who don't.

Just like some people might be scared away from trying Elmiron because of my negative comments about it, some could be scared away from trying alternative drugs because of the comments of others on this board.

If I had listened to a whole lot of the "nurses" on this board who put down Cytotek, I would never have tried it and I would be entering college still in pain and with a poor quality of life. The horrific stories of Cytotek occurs when it is inserted vaginally in pregnant women. I doubt any ICer in their right mind would take it while pregnant, and I highly doubt anyone will be putting it in their vagina. I think people are smarter than that. (btw my mom is an R.N. and I have respect for nurses... they just don't replace doctors)

Think for yourself people.

Bottom line. Don't let strangers on an internet message board influence what you will and won't do in regard to treatment. Look at the studies. Do your own research and then decide what's best for you.

[sacausa]

just want to add..... not directed at anyone in particular.

For those that Elmiron did not help, and are taking narcotics, vicodin, tylenol 3, morphine etc...... long term use of those can cause liver cancer, just like Cyclosporine-A can potentially cause cancer. But for somer reason it's not taboo to take those pain killers, but if someone mentions Cyclosporine-A , they might as well have used a swear word.

WHY? (rhetorical question):confused:

[BeachBaby]

What medication you take is a personal decision. If you research Elmiron and Cytotek, you will find that Cytotek actually has less side-effects than Elmiron. It has also been around much longer so we know about the long term effects or lack there of.


BINGO!!! It is a personal decision. Bottom line. I for one have NEVER made any decisions regarding my health care based on the boards. This is a place to gather information and then choose to pursue certain things or not. It is at the very least subjective. BUT, when different options are discussed, personal as they are, I think we all have the right to weigh in and say what works "for us". I speak for myself when I say that my opinions are in no way a reflection towards what anyone else here does.

In fact quite recently, a thread was started asking people to please post any success and how it occurred. Well...for me I can only report on Elmiron, as I didn't use any other treatment with it. It's not a validation of the drug as law or the only way to go, it is quite simply what has worked for me.



I'm tired of reading peoples negative comments on the alternative drugs... I'm headstrong and think for myself. There are some people who don't.

Just like some people might be scared away from trying Elmiron because of my negative comments about it, some could be scared away from trying alternative drugs because of the comments of others on this board.


As long as I have been on the boards I have seen my share of controversies, it happens. BUT...I must be missing something here, because I know a bunch of folks here who spend a lot of time really helping out with alternative meds/treatments. I can't speak for everyone, but I have been very supportive of the CyA and Cytotec users. I also am not aware of "all the negative comments" and the mention of nurses. The nurses that I know of on this board are in fact very supportive and try to reach out to everyone. I must have missed all that negativity as well.

For the CyA and treatment option users, I know they have such hope these might work, and I think there would be huge disappointment just as in any treatment if it doesn't. As a matter of fact, I think the only thing ICers have in common, despite the complexities of the disease, is the wide range of disappointments so many go through in trying to find the right treatment.

There are a number of alternative treatments, if you will, that people use. I am not against them, I just never had to add them to my regimen. I think when most of us welcome newbies, who are asking for help in fighting a new disease, most of us give them the standards first, and quite often they are referred to the IC handbook, which covers all treatment options.

There is enough information available here on the boards to cover just about any treatment known to ICers. It is our responsibility as the patient to educate ourselves and work with our health care team in deciding what works and what doesn't. But I truly think lots of info is given out here and discussed, not just Elmiron.

My understanding is the boards are to provide support and discussion. It would be far to libelous for the ICN to even remotely suggest or endorse any prescription treatment.

I have spent 4 years on the boards. I have tried to be supportive, regardless of the issues. But it is I who now feel as though I am defending my success! It makes me think about my involvement here, if so much is seen as truly negative and only Elmiron is the accepted drug of choice (which I don't think is the case at all), then I wonder why I bother to post, support & even wonder why someone would state a fact like Elmiron causes ulcers.....:loco:

If I hadn't been successful, and who knows how long it will last...you can bet your "tushy" that I would be seeking out any/all treatments available. But so far I have been lucky and I guess I just don't want to feel as though something is wrong with that. I have plenty of other health issues to battle, so I am cautious with anything I add in the name of IC. It is all a matter of balance for me.

If all of that makes me negative and not supportive of other treatments, well all I can say is I've given my support and my best shot.

[ICNDonna]

I really need to chime in here again. I took elmiron for six months before I developed a headache side effect and had to stop taking it. I cried because I think it was beginning to help, but I couldn't tolerate the constant headache. During the clinical trials, only 1% developed headache as a side effect.

The printed material that came with my prescription each and every time I had it filled advised that I should not take aspirin or other anticoagulants while taking elmiron --- and my doctor also told me to avoid them.

Any time we are taking any medication: herbal, prescription, or over-the-counter, it's important that our primary care physicians are aware. It's their job to look at the entire health picture and oversee our care.

Another safeguard that's available for many of us is that, especially if we order all of our prescriptions from one pharmacy, their computers will pick up any conflicts between medications. I always scan the printout I get with every prescription --- and if it's a new prescription, I read it thoroughly.

Donna

[sacausa]

Let me rephrase. Elmiron can cause ulcers. Elmiron did cause an ulcer in me. I have read on this message board of Elmiron also causing an ulcers in other users.

Looking back at the original Cytotec thread, I have to say that Lori did not react like some of you when people brought up the "possible" deadly side effects of it when used impropperly. Likewise, I did not expect people to react so defensively when I brought up the "possible" deadly side effect of Elmiron. In fact, Lori reacted with poise and a humble spirit... open to any new information.

I also did not direct my posts to anyone in particular, thus if anyone is taking offense from it that's their own personal problem. When someone brings up the bad side effects of Cytotec, I do not take it as a personal attack on me.... I just see it as the person not being informed.

I am in awe at the sudden need to defend Elmiron when this study clearly shows that only 1-2% reaches the bladder.

If anyone has success with this drug, great.... just like you deserve the freedom to shout it from the mountain tops... I deserve the freedom to warn others of it's potential side effects, small chance of actually working etc.

[vm]

You're absolutely right - we all can share side effects we are aware of and our experiences with all drugs. And we all can share what we feel the facts are about the side effects and the effectiveness. It's what this board is all about.

We should be all about making sure new folks to the boards are getting accurate data - so it is a give and take. That's what is so great about this board and the folks who post here. :)

We have joined you in the past in making sure people are aware of the possible side effects and which are likely to occur and which to watch out for. I've not had any side effects, but I know others have. As Donna said it is in the prescription insert and is readily discussed here on the boards.

We also join you in sharing the news that only 1-2% of the drug appears to make it to the bladder. That 1-2% has been more than enough for many of us - thank goodness! Isn't that wonderful that even though a tiny bit gets there it helps some of us? I celebrate that as I celebrate when other treatments work for other people.

Anytime someone gets relief from IC I want to build them up and share in that success. It is an awesome thing because so many of us suffer for so long. It is hard to keep hope and hard especially for new folks who come here looking for that hope. ANY treatment, no matter how few it helps or how many it helps is cause for celebration b/c it changed that person's life. That is big - to each and every person it has happened for. :)

[green_the_fish]

Hi everyone. Great discussion! Again, there are so many different opinions and everyone is being very honest and candid.

Lori, I do know what you mean about certain alternative treatments not being readily accepted on the boards. For example, some people don't think very highly of Urocit-k, also known as potassium citrate. They look at the name and figure, "hey, that stuff has potassium, and also citrate (citric acid)... we aren't supposed to eat that stuff, sounds like it might be dangerous". Sometimes comments like this make me defensive. Now, I don't know much about chemistry, I got a D in the first semester of Chem class last year, and I failed the second semester :lmao:
But I'm pretty sure I remember reading that the body makes citric acid alkaline somehow. The studies that I've seen do show that potassium citrate makes the urine more alkaline. I know that whether or not the urine should be slighly acidic, neutral, or slightly alkaline has been a topic of debate on the boards, but it is my opinion that some people can be helped by making their urine slightly more alkaline.

Honestly, at the end of the day, I don't really care why Urocit-k works. Maybe I get how the whole citric acid thing works, but probably, I don't. But I know that it has been helpful in combination with Hydroxyzine, and that's enough for me. I know about the side effects and I still choose to take it.

Now, I also know that when people make these comments, they have good intentions. Generally, they are warning me about it because they care about me and want me to be okay. I think that's sweet. And I think that's how it is when people warn Lori and Sacausa about CyA. Guys, I don't think people say that stuff 'cause they want you to feel stupid, I think that they are doing it 'cause they care about you and want you to be as healthy as you can be. I don't think it's their place to tell you guys what to do, but there is no doubt in my mind that the "nurses" here have the best intentions. People care about you guys a lot, because you are an important part of our IC family, and they want you to be safe.

Now, one of my general philosophies in life is that, as long as you're not hurting anyone else, I don't really care what you do on your own time.

Like, if a random ICer came up to me and said "Green the Fish, I have started smoking weed during flares, and I feel that it eases my pain. I am going to continue to smoke weed during my flares".
I would say, "Well, you know smoking pot is illegal, and it's not that good for your lungs, right?"
And they said, "Yes, I do know that, but it's a risk I am willing to take."
I can honestly say I would have no problem with that.

Now, I'm not trying to compare CyA to marijuana (I never heard Cheech and Chong talk about CyA :biglaugh:), but my point is that as long as people know the risks of what they are doing, and they don't hurt anyone else, I'm cool with that.

Like, Lori, I remember I was one of the people that made a comment about CyA when you talking about it one time. I think I Googled it and made a comment about some of the side effects. But, you answered that you were aware of the side effects, and you seemed very well-educated on the medication in general. And that's why I support your decision to take it. If someone is as knowledgable about a treatment option like CyA as you and Saucasa seem to be, and they know all the risks, then I say "go for it". You guys have a right to try CyA, and I think you are very brave to pave the way for future ICers that may want to pursue that treatment option.

Another good example is the time I went to the Vitamin Shoppe to buy some Kava Kava. I found out about it in one of the awesome newsletters that Katrina used to write for RemedyFind. I read up on it and found out that one of the potential side effects is liver damage. I spent several days reading up on it, and then decided that I was okay with the risks, and wanted to try it anyway. When I went to buy it, the dude that works at the Vitamin Shoppe said "Just so you know, this stuff can hurt your liver", and I nodded and bought it anyway. I think it was really nice of him to warn me about that, even though it could have potentially scared me away from buying Kava Kava, and thus, resulted in the Vitamin Shoppe losing some profit. He obviously had good intentions. But I already knew the risks, and I bought it anyway.

There are certain treatments that I would never try, like colloidal silver. That stuff can turn your skin grey, and that's gross. But I have talked to people on the boards who are taking variants of colloidal silver (such as silverbiotics), and while I think that is not a safe choice at all, I'm not gonna tell them what to do. I'm gonna warn them about it, link to a couple sites that explain it better than I can, and go on my merry way.

Maybe I am starting to ramble here, so I'm just gonna state my points. If you know the risks of what you are taking, and you choose to take it anyway, then I support you. I know about the stuff I am taking, and I take it anyway. If someone warns you about something you are taking, then they are most likely doing it out of love, but you still shouldn't let them make decisions for you.

Hugs to everyone :grouphug:

[ICLori]

Hi, Green, thanks for this - I hadn't even considered that people were just worried about me, I don't know why I didn't think of that. I guess I have a hard time understanding where people are coming from, if I can't hear their voices or see their faces, you know? But your explanation really makes sense.

I'm really amazed by this thread at how much we all have in common, whether Elmiron has worked for us or not. All of us want what is best for other IC'ers, all of us worry about the side effects of all the drugs, all of us wish there were better research, that the drugs were more effective, that no IC'ers would ever have to suffer anymore. We really do all have sooo much common ground, don't we?

All that we debate is just the fine points, really. And we all tend to feel more positively about medicines that have worked for us, and less positively about medicines that haven't, because we are all human and our experiences naturally color our perceptions and opinions.

I think if anyone in the world can figure out the mystery of IC and these meds, I mean any group of patients, it would be us here on the boards! We really learn a lot from each other with these discussions, and I find them so valuable and useful.

Blessings,
Lori

[BeachBaby]

Okay!

I needed to sleep on this for a bit, in order to respond to the current posts. At first I was incensed by the inaccuracies firmly stated and later retracted. Or better said...rearranged to suit the posts.

Elmiron does NOT cause ulcers (it may contribute, as do so many things) and it is not documented anywhere that it causes death!!!! Good Lord! To discuss it's low rate of success for 2/3's of people who take it is well within the discussion area here. After all this IS a post about Elmiron and the current studies.

You know there was a reference to "older age" here....not sure of that relevance, but whatever! So, here I am at 51! And happy to be so old! I have buried way too many friends from 40ish to 50ish, not to mention the loss of family members. Some of these folks have courageously battled rare cancers and even knowing the "low efficacy" of protocol treatments, they have gone for it, hook, line and sinker! I have friends in full remission and others that I only can try to remember their face or laugh.

As a matter of fact, I am home this week and get to visit with my dear friend who is attempting to cope with the tragic loss of her husband. 52 years young! To say he NEVER had any treatment options but fought like hell for 3 years, is minimizing his war!!! Another dear friend is in isolation (my first opportunity to visit) after battling blood cancer and ending up with a bone marrow transplant via stem cells. He is a warrior and during his darkest days, makes ME laugh, even at myself when needed!

So, it seems I am off track here, but my ramblings are to show that I do "get" desperation and the need to try and to pray that what we are prescribed and even beg for might help us! I don't know anyone who has died as a direct result of IC...or Elmiron.

So, as I have been feeling like I am fighting a war on this otherwise good discussion, I wake up realizing that I have only stated what I know is true FOR ME!!! Call me old, but trust me when I say I have endured far worse chronic issues, one of which is raging after 30+ years, and I have seen my fair share of sorrows.

I have been a caregiver more than once in terminal situations and would do it all over again! I have learned to respect that people who have gone before me, especially tiny frail elderly people have much wisdom to share, if anyone chooses to listen. IN other words, I have learned so much, and know that I am not done seeking and learning. I have raised two daughters and know how incredibly hard it is for them to navigate the trials and tribulations of growing up. when they act/become jaded...I feel it is my job as their Mom to listen, cry with them and then also teach them the art of humility. I am incredibly proud of them both, even as they make the mistakes of their young years! I take joy in watching them eek out independence and learn that no relationship is perfect. I get compliments on being their Mom, as does my husband of 27 years!!! This is not meant to sound snotty, it is more to revel in the small wonders of life.:)

I digress! I mistakenly said I have been here for 4 years. I was Dxd in 2002, treated, etc w/o knowledge of this site. I joined in July of 2003. User name changes need not apply. I can honestly say I have been incredibly supportive and despite many sorrows of my own during this time, I NEVER came here for support. Except in my mother's final days. I HAVE wished those on cytotec well and CyA, more specifically ICLori, as I have followed her triumphs and disappointments for sometime. She KNOWS I have reached out to her. But, I feel very much included in the inference of negativity about any other treatment, despite my posts directly to her. Talk about feeling jaded! In fact I believe it was Lori that asked for success stories because she really needed to know they happened. To then read that the feeling is "everyone is negative, etc" leaves one wondering, why bother at all.

The fact that my success was found in Elmiron is hardly a strike against me. I believe in this for ME!!!! It has been a miracle! do I wish it was the same for everyone? Hell, yeah! But the truth is, it isn't, just as a million treatments here aren't and everyday people are posting about yet another treatment that doesn't work, or hasn't yet. Or the ones that DO and aren't discussed in large numbers. I say GO for it!

So, I am not defending myself the drug or anything else. I am merely trying to remind all of you who feel "the rest of us" have been SO negative and discuss a drug YOU despise, that we are all here for the same reason. SUPPORT. I have spent hours giving it and JUST ONCE I wouldn't mind someone defending me and saying, I am truly happy for you! I have worked hard too! I am never sure how long this success could last, but I am damn sure of one thing! I am going to enjoy it! I ask anyone here, is this not what we all crave and dream about? No matter where or how we find our "magic bullet", I just thought the one thing we MIGHT have in common is to be happy for each other and cheer each other on.

Read anyone's tag line and you will find as many different treatment options, as the over 12K+ members who come here for hope. I can ONLY explain what has helped me. It doesn't have to be agreed with, but it is ALL I know for now. BUT, I also have written many a post in complete support of others!

I really think that some here need to check their anger at the door and before posting, try to understand that we ALL have IC and if the researchers haven't isolated the one reason we have it, how on earth can we? As for the discussion of Elmiron, the cost and it being the only "IC" drug...it is simple. The patent is still only for PSS and even if other companies can easily respond with a generic and much cheaper version...by FDA rules it isn't possible until the patent runs out. Every drug has been through this process and unless something changes those rules, it will remain just so.

So, I end this (my part of the discussion) with great hope for ALL of you and the hope that when we come here we do so with respect for the myriad of treatments people are using. I think it is the least we can do! I am not so sure about my support anymore, especially if it isn't respected, nor is it acknowledged. I don't come here just to hear myself think out loud...I only sign in on rare occasions, to post directly to something I feel passionate about.

I am no longer passionate about this discussion, it started off being informative, but has left me feeling as though I will be careful of any comments in the future, supportive or otherwise. BUT! I leave this knowing I have been decent to people here, and that I know that my opinions are subjective at best. I am not feeling attacked, injured or otherwise...I am merely finishing what I started and until I know otherwise about my personal treatment options, I will continue to believe they have helped me.

I wish everyone well, and I hope you ALL advocate for yourselves and seek out the treatments you feel will help you the most. If they disappoint, then go back to the drawing board and see what your options are. I hope everyone tries very hard to work WITH their medical team...they are far from perfect, but most will admit they know about as much as we do.

Ciao!

PS: I usually come here once a year or so and really get into a "discussion"...my better self stays away. So chock this up to my "novella" of 2006 and may we all pray I am not on a roll.

[ICLori]

Hi, Betsie, I wanted to say, I do remember that you've always been supportive of me and others, and I appreciate that so much! I'm sorry for how I've written these posts, I didn't mean to say that everyone looked down on me for trying different things.

There were just a few posts from other people, is all, that I misinterpreted (I think) as being critical, when they were probably just worried for me. Anyway, I understand it all better now.

I'm so glad that Elmiron has helped you - I just wish it helped more of us. I still think that it tends to help milder cases, rather than severe cases...just a hunch I have.

I'm shocked that you say IC isn't the worst thing you've had to deal with - for me, IC has been by far the worst thing I've ever faced, and I've faced quite a bit in life so far. The worst part was never having any escape from the pain - waking up always in pain, going to sleep in pain -never a moment's rest from the horrible pain. I consider that really awful, to always be in pain.

I think if people aren't in pain all the time - if they are generally comfortable, with just occasional flareups - then their IC isn't so bad - but if they are like so many of us, in pain every single moment of every single day, it's a different thing -then it is quite hard to bear, I think.

Anyway, I am soo grateful to be in remission now, and I hope and pray that the remission sticks. I hope and pray for remission for all IC'ers, with one med or another. Whatever works, is great. I just wish the meds worked better for everyone, is all.

Blessings,
Lori

[sacausa]

I honestly think that interstitial cystitis (as well as other chronic painful disorders) is worse than cancer. With IC there often is no end in sight, and daily pain that greatly diminishes quality of life. With cancer there is either remission or death, but there is an end to the pain. (please note that my grandfather died of cancer in his early 30s, I'm not saying this lightly... I have many family members and know parents of friends who have both died and survived cancer so please don't preach to me about how horrible it is)

With IC I have suffered debilitating pain, it once diminished my quality of life and I cringe when I hear of others going through the same.

Everyone please recognize that everyone's IC is not exactly the same, there are very severe cases (such as my own) and there are mild cases. Just because it wasn't that bad for you, does not mean that it's not that bad for everyone. I'm honestly jealous of those who only have mild pain and frequency. I would honestly rather pee 50 times a day, than be in severe pain. Before I was diagnosed and started pain medication, I was admitted to the ER for going into shock from severe pain. In fact, pain was my only symptom and still is. My bladder pictures aren't only a little red and inflamed.

I honestly believe that those that have been helped my such a minute amount of Elmiron reaching the bladder, did not have a severe case of IC to begin with.

It is my DOCTOR not me, who told me that it was Elmiron who caused my ulcer. I was on no other medications at the time, and I did not have a history of ulcers whatsoever. I know there are some people on this board (not pointing fingers at anyone in particular) who self-diagnose etc. I am not one of them. I am a pre-med student and highly regard the insight of doctors.

I wish I still had my Elmiron patient insert. At least one person did die while they were on this drug. I am so frustrated.

[Sarojini]

Just because ONE person died during an Elmiron study doesn't mean Elmiron necessarily caused it. Due to NIH and FDA rules, scientists have to report ANY DEATH during a study, and that death may have been from a heart attack and NOT from Elmiron, but it HAS to be reported as part of the study and therefore it is printed on the insert. When patients are chosen for studies, every attempt is made to get a homogeneous population with no underlying factors -- unfortunately, an "underlying factor" is not always visible nor even known of by the patient.

Frankly, as an actual scientist, I am tired of sitting back and just watching this thread. I am really sick of reading the pseudoscience that people are posting -- the actual reports on Elmiron and other drugs have been twisted completely out of shape in order to suit people's opinions, and that is NOT OKAY. At this point, it is impossible for newbies who are not scientists to discern what the truth is from this thread, and that will probably terrify them and discourage them from trying ANY of the drugs mentioned here.

If you want to post about these drugs, post your opinion only, and encourage other patients to read the studies for themselves and make their own decisions. Either that or present the study in an unbiased way; simply state a piece of data and don't twist it to fit your opinion.

For example:

Currently, the survival rate for brain tumor patients is about 20-30%.

Just about everyone who develops a brain tumor gets radiation for their tumor, but nearly everyone eventually dies, as shown by the statistic provided above. However, radiation is prescribed because tens of large, multicenter studies have shown (with p values of < 0.001 on a Kaplan-Meier curve) that radiation will give the patient maybe several months to a year more. That is because it can penetrate the skull and there are no issues about blood-brain barrier penetrability. Radiation, however, has a lot of side effects -- both acute and long-term. Nausea, vomiting, hair loss, fatigue in the now; perhaps serious cognitive impairment later, since it's hard to avoid all normal tissue when the radiation is given. In the worst cases, people have died from radiation treatments due to late effects that showed up months to years after the treatment.

However, there is a new drug out called Temodar that patients take orally, and these days just about everyone tries it too because tens of multicenter trials have shown it to be effective at prolonging life. It also gives patients some extra months too, but eventually most of them die too. It has side effects as well, including nausea, headache, tiredness, loss of white blood cells (leading to serious infection), loss of platelets (leading to clotting problems), and it has been proven to cause birth defects.

This is DATA.

What I didn't tell you is that I am a radiation biologist and I work on improving radiation therapy for brain tumors.

What I COULD have done here is spin this to make Temodar sound horrible, and radiation sound like the greatest thing in the world because I work on it and I don't want people saying I'm gonna be out of a job now that Temodar is on the market.

I could have left out the stuff about frequent cognitive dysfunction and possible death in radiation cases, and focussed on how horrible the side effects of Temodar are. I could have told you that hardly anyone experiences vomiting from radiation, while EVERYONE on Temodar does.... even though I've seen in the clinic that some patients get it severely enough to be hospitalized after radiation, and that some patients have absolutely NO nausea at all while on Temodar.

I could have picked and chosen my studies to report to you so that it looked like radiation provided years of extra life while Temodar only provided a few weeks. I could have ****** and moaned about how Temodar causes birth defects, neglecting to mention other nasty radiation stories.

I didn't though. I presented data and gave you pretty much no bias one way or the other, and therefore, my post might encourage a brain tumor patient to try Temodar, try radiation, or try them together -- because it IS their choice in the end.

Newly diagnosed IC patients, as well as their family members and friends, tend dwell on dire statistics they may read or hear about with regards to IC. When you're shocked about finding out you've got something incurable, it is easy to take such statistics literally, thinking that they apply to your situation, and this can leave people feeling profoundly depressed and robbed of all hope.

This thread is bordering on this type of thing -- it presents EVERYTHING as a horrible option, and is possibly headed towards the "realm of no hope", ie, "All these treatments suck, so I'm just going to do nothing for my IC."

Is that what we want to be here on the ICN?

[ICLori]

You make a great point, Jen. I don't want to discourage any IC'ers from trying every treatment out there. I always think, don't ever stop trying, try every single relatively safe thing out there, until you find your miracle!

I always tell people, start with the standard meds first - Elmiron, Atarax, Elavil, maybe DMSO, hydrodistentions, and rescue instillations, maybe some herbal remedies if you like those. Then move on to other, less-well known meds. There is a list that has to be about a mile long, of different meds to try - in a way that's good because at least there is almost always something left to try so you can still hope - in a way it's bad, because it means there is no one drug yet that is a miracle, really, for IC. Even the one I'm on only has a 75% success rate, which isn't as high as I'd like to see. And there are tons of side effects (at least at first) and risks and it's expensive as can be.

I think that's what I'm afraid of more than anything - that someone will give up too soon. That they will lose hope and not try every single reasonable possibility out there...

Blessings,
Lori

[kingofpain]

Being in the health field, I felt a need to chime in as well. After 3 years of almost constant pain and urgency, four urologists' opinions, countless medications tried with usually worsening symptoms, I am now ready to give elmiron a fair trial. Having read the horror stories on line, I reserved elmiron as the final option, trying to avoid the side effects. A few months ago, I was desperate enough so I began taking it, but stopped because it caused bleeding in the stool. Having just had a colonoscopy to rule out more sinister causes, my MD assures me that any further bleeding will not be severe and may actually diminish with time. He feels that although no official IC diagnosis has been made, elmiron may shed some light on my problem if it actually helps me. The fact that it has been approved by the FDA to treat IC tells me that it has to have proven to have some efficacy, which outweigh any dangerous side-effects. I am thankful that this option still remains, and I hope that that 1-2% of the elmiron that reaches my bladder will actually have a positive effect as it has had for some others.

[Cali girl]

I am one that Elmiron has helped. I also take Detrol La, Atarax and elavil. I think it is the combination of meds that has helped. I have my life back. I am not at 100%. But that is okay. The only side effect that I have with those meds is that I am groggy when I wake up in the morning. And it takes a little while to shake that. But I understand that. So I give myself extra time in the morning. I have been taking that combination of meds for almost 3 years.

In the beginning I was so scared that I would never be able to function. I had to pee about every 5 mins. My bladder felt horrible. I could barely walk. My doctor first put me on Detrol La before I was diagnosed with IC. But that got my bathroom trips down to about 1 every hour. And of course still waking up at night to go too. I had stopped getting better. That is when my doctor did more tests. And eventually found that I had IC. My doctor then added Elmiron and Elavil along with the Detrol LA. I very slowly started to improve but I wasn't quite there yet. In the meantime I had moved and had to leave my wonderful uro. My new uro was not understanding or compassionate at all. And did not know a lot about IC. He would look at me like I was nuts because I had IC. It was like he didn't think it was a real disease. He laughed at me when I told him of what I had gone through. But I was stuck with this doctor unfortunately.

From these message boards I had heard about Atarax. I asked my doctor to prescribe that to me. I had to beg him for it. Within a short while of adding that med to the others, I had reached a point that I hadn't been at in a long time. I felt that I was getting my life back. I had hope. And it worked. I am still going strong everyday. I have occasional bad days. But trust me I have a lot more good days than bad days.

I hope this helps some in their decision on what treatments to try. I know not everyone responds in the same way. But there is hope. I know when I was first diagnosed I came to these boards and I was terrified. But everyone was so supportive. And I read about other treatment options. After all, this is also where I learned about adding Atarax to the other meds I was already on. :smile tee

[vm]

I hear ya. These boards have always been my BIGGEST source of information about treatment, symptoms, self-help tips, etc. Thank God for it b/c doctors simply don't have the time to provide all the education we need to stay informed about our own health issues. I'm glad you all are here, sharing your experiences with what has worked for you. :)

[mayray518]

I was on elmiron for 9 months and all it did was give me horrible stomach cramps. It does help some people; all of us have different things that help. Elavil saved me and it doesnt help some people. At least with elmiron IC was given more attention. I had one doctor tell me that "there was no such thing as IC." I said "Well then why is there a drug out that is used for that purpose. She was not even aware of elmiron.

[Casi]

This is so good to read!!!! Elmiron did nothing for me after 10 months and I experienced nausea and hair loss as well. My OLD uro said "Wel, if Elmiron doesn't work for you and the instills dont work there's nothing else to try b/c that's the only treatment options for IC." Yep thats what she said. I was so discouraged I went home crying because I KNEW there were other options and I have new uro that I love!!!!
I had know idea that it works for such a small amount of people!! That;s great that those people get relief though!!! I, like so many of you am continuing my search for relief.........

[ICLori]

I think that's what I wish I could tell everyone who has IC - don't ever give up! Try everything that seems safe to you that has any chance of working - just don't give up, don't lose hope, surely something will work for you and your life will be yours again! And even if the very worst happens and nothing currently available works, there are sooo many treatments being investigated right now, and so much more money pouring into IC research than ever before, that the future looks very bright! I expect new, perhaps more effective, treatments for IC soon!

Blessings,
Lori

[massagedoula]

My computer would not let me access the boards for the last week, and now I sign in to see the boards looking all different, PLUS this huge thread about Elmiron! So, I want to say that I respect everyone's opinions, but I also want to post my experience too. When I first got IC, everything I knew about it came from the boards, and so I think it is important we all post our experiences.

I have been doing very well on Elmiron. For those of you that remember me, I waffled back and forth for over a year if I was going to take it or not. I got myself very scared. I was peeing 30+ times a day and in constant pain. I was unable to have sex, walk any distances, or eat barely anything without it getting worse. My turning point was when I started Midwifery School. In my first quarter I was still trying to treat my IC totally holistically, as I had been for the last year plus. I could barely concentrate and knew that I had to get better to make it through. I asked my uro for Elmiron. She told me that only one out of four of her patients improve on it, but it I wanted to see if I was one of them. Now, 11 months later, I have just finished my first year of school. I go on walks everyday with my dog, and can sometimes have sex without pain. Tonight I even ate a little thai food. I am not in remission, but am about 70-80% better than I was last year. So I wanted to share my experiences on it. I am not a brainless person, I researched the drug extensively, and decided to go for it. I am glad that I did.

[ICLori]

I'm so glad that you are doing so well! Success stories like yours give all IC'ers so much hope! I hope that the longer you are on Elmiron, the better you get, until you are in full remission!

Blessings,
Lori

[liznazz]

I just wanted to say that I have been on elmiron for 2 and a half years now, and along with atarax, it has been my saving grace. I am always careful to use the word "remission" . I watch my diet for certain foods, but have added others (like chocolate ) without any repurcussions. It took almost a FULL YEAR for the elmiron to kick in, but once it did, I felt SO MUCH better. This is just my personal experience... but I won't give up my elmiron!

[mayray518]

I know how you feel when something works its like God gave us our lives back. I will never give up my elavil.

[IC SARAH-CPP]

Yeah I was told that Elmiron helps almost 80 percent of patients. Actually I was told ( by a VERY well known IC doctor who did the trials for Elmiron in So.Cal) by a doctor that Elmiron almost totally eliminated symptoms for 80 percent of patients who stay on it for 2 years. I took it for 2 years and if anything, I got much worse. I will NEVER take a med like that again.
Sarah

[IC SARAH-CPP]

Actually, what I meant to say in my post is that I will never take a med like Elmiron again without doing more research on it. I cant edit the reply for some reason but that is what I meant to say. I am happy it helped people, even if it only helped one person, it is still worth it!
Sarah

[ICLori]

Hi, Sarah, I understand what you are saying about the frustration of hearing a doctor or anyone else (but especially a doctor) tell you that this pretty much always works. Even the IC'ers here who have had positive results with Elmiron, would never say that to anyone - they are always honest in saying that there are people it does not work for.

I am glad for the people who got better on Elmiron, and saddened by those who didn't and were disappointed, and wasted time and money and had side effects all for nothing.

I would still say that it's worth a try - my personal opinion is that I'm going to try everything that doesn't kill me, LOL, until I get better. What I mean is, even if a drug doesn't have as high of an effectiveness rate as we hope for, it's still worth trying, because IC is such a horrible disease, that any medicine that makes ANY of us better, is a godsend.

Blessings,
Lori

[diane57]

I'm one who has been helped greatly by Elmiron, although it was a very very slow process - 4 months before I really noticed an improvement, 8 months to where I felt almost normal. Although I was in horrific pain during the flare-up that sent me to treatment, from reading others' stories I think I have a mild case of IC. I'm close to remission now, most of the time I have no symptoms whatsoever, and maybe once every few months I have a slight flare, usually traceable to a food indiscretion, although I now eat almost entirely a normal diet with no restrictions.

I have great sympathy for those who tried Elmiron, at great expense, and after hearing their doctors' pep talks, and found that it didn't work for them. I can't imagine how frustrating and depressing that would be.

Like everyone else, I'm curious why some of us are helped and some not. Scientists of the boards, help me out: If only 1% or 2% is absorbed, does that mean that 1% or 2% per dose is absorbed, so that after 50 or a hundred doses enough is absorbed to coat the bladder? Or does it mean that forever and ever only 1% ot 2% of the bladder is coated? I'm thinking it means per dose, in which case, for those of us it's effective for, the longer we take it, the more is absorbed to protect the bladder lining, and the better we feel.

I also think that's why some people can go off Elmiron after awhile. If IC is an inflammation of the bladder lining as a response to an injury or trauma or acidic foods, then we take Elmiron for a good long while, and the bladder lining is healed by being protected by the Elmiron (for those that respond to Elmiron). Theoretically we could then stop the Elmiron, and assuming we avoid future trauma to the bladder (no infections, no hysterectomies, no citrus binges), maybe the bladder lining would stay intact and healed, at least until the next thing that irritated it. From what I understand, we ICers have a subtance in our urine that prevents the bladder lining from repairing itself after it's been injured, and the way Elmiron feels to me is that it's done a slow repair of the injuires to my bladder.

[massagedoula]

Diane,
Do you still take the normal dose of Elmiron? I cut mine back to one a day, but your theory sounded so intriguing that I may just go back on 3 day, and then eventually stop forever once I feel in remission (totally not partially.)

[sweetangel2080]

Diane, that's what I thought about Elmiron - that it is 2% per dose.
It does sound right that given enough time once the bladder lining is coated and protected, the bladder lining underneath can start healing as long as we don't continually eat bad foods and drinks to irritate it more.
I think that's why people discontinue Elmiron after a few years...
I dunno though, I am going to continue taking it until I feel relief and only stop it if I get diarrhea or get pregnant.

[diane57]

Hey Massagedoula! So great to talk to you again.

I have cut back to 2 Elmiron pills a day, 1 in a.m. and 1 in p.m. I started out at 4 a day, 2 in a.m. and 2 in p.m. I've been at 2 pills a day for a couple of months now, and so far haven't noticed any changes. I'll stay on this dose until my next uro appointment in December, and then re-evaluate.

How long have you been taking the reduced dose? Do you still feel the same, i.e., gradual improvement all the time?

[JaniceB]

I've been on Elmiron 8 months now and I have noticed a big difference. The improvement has been gradual, but so much better when I look back and compare to where I was with my IC 8 months ago.

I've even been able to STOP taking amitriptilyne for a month now. So apparently Elmiron (or Vistaril, or the combination of the two) are doing their job.

I'm thankful for Elmiron. No bad side effects, either.

Janice

[purpleviolet]

I've been reading this thread on elmiron with interest and glad to her Massagedoula doing well on it. I don't take it due to fear of losing more hair, which I started to lose even before getting IC.. but I wonder about the following:

1. Why does Elmiron cause some people's hair to fall out? What is it doing to the body? If we knew why then we could counter the effect perhaps.
2. Why MAY it cause or aggravate ulcers?
3. Does it really cause blood thinning or is it just speculation on the drug company's part? Has anyone had their blood tested for this (and how is that done). I would hate to give up taking fish oil (fish oil supposedly thins blood).
4. Would taking bromelain with it increase its absorbtion? Bromelain has been shown to increase absorbtion of certain anti-biotics and is often used with other herbs to increase their absorbtion, but would that be bad since bromelain in itself may be blood thinning.
5. Why is absorbtion a good thing? Sometimes it is better when a drug isn't absorbed into the body, but just does its job in the bladder and doesn't affect the rest of the body.

I wish I knew these answers. PV

[StacyV93]

I've been on Elmiron about 8 months now and haven't noticed any change with my IC. The only relief I seem to get is when I use the "rescue installations" my doctor prescribed. I've pretty much just accepted the fact that I may always have pain/discomfort, but I hope that another drug becomes available soon so I can get some relief...

[Nonna]

My doctor feels that Elmiron only works at very high doses and most doctors will only give the minimum which is not enough. He thinks the minimum is about 600 mg - 900 mg. That may explain why so many people don't get help. He says good results at higher doses for certain types of IC.

[Angeles]

Can people tolerate such high doses? I can barely tolerate 300mg a day.

[purpleviolet]

Remember the study on dosage that said it didn't seem to help to be on a higher dose - just how long was important.

[mare mare]

I read about a study where scientist gave rats IC. These poor rats would bite and chew away at their bladder! Need I say more!!

[Nonna]

I really don't know about side effects at higher doses. I am planning, though to ask him for a higher dose Rx at my next visit next week because I think it's helping-- but not enough. As far as the side effects, I haven't had much problem at 300 so I don't know if that means that I won't at 600. I'll ask him all of these questions at my next appointment and add to this thread then.

[BeachBaby]

My doctor feels that Elmiron only works at very high doses and most doctors will only give the minimum which is not enough. He thinks the minimum is about 600 mg - 900 mg. That may explain why so many people don't get help. He says good results at higher doses for certain types of IC.

Nonna,

I had a second opinion Dr in 2003 - he was/is an IC specialist, now in research. But he also felt this way and said he felt 600mgs for a woman and as high as 900mg for most guys was a reasonable dose.

I had great success with that and I am now down to 100-200mgs daily and sometimes forget it altogether.

My URO was happy to go by this recommendation, so I think thee may be something to it. BTW...I didn't have increased/changed side effects. I went through about a week of a bit of gastritis, but nothing I couldn't handle. Good luck, I hope whatever dose you decide on is helpful.

[Sonat]

P.S. I find it interesting that they write, "the majority of patients do not improve on..." I remember not too long ago, Elmiron was considered to be the best thing that ever happened to IC patients - one uro told me "Elmiron ALWAYS works." Now urologists seem to be of the opinion that it does not work for the majority of patients. What a switch!

I quite agree with Lori.
In my opinion Elmiron is not effective because of a Placebo-effect, but by definetely rebuilding the bladder-mucosa.
A few months ago I stopped taking Elmiron, because I wasn´t really sure if it was working or not, but actually believed the improvement was related to Uropol (Chondroitine Sulfate) and / or Elavil. About 2 days later I was crying like hell, because I couldn´t stand the pain.
The reason for a physical respondense could be related to potassium-sensitivity or -intolerance.
I recently read that patients that respond to Elmiron and/ or Elavil are usually those ones where some sort of potassium-intolerance has been diagnosed.
That could also be the reason why a lot of patients don´t respond to Elavil either...

Greetings

Sonat

[Sonat]

by the way....

Do all of you take Elmiron 1 hour before or 2 hours after a meal???

[Nonna]

As far as when to take and dosage, my doctor (who is one of the really foremost respected authorities on IC and Elmiron--he was involved with some of the original trial usages of Elmiron years ago) upped my dose yesterday to 600 mg. a day and says that the absolute best time to take it is on a totally empty stomach. So he recommends early early in the a.m. hopefully a few hours before any breakfast and right before you go to bed. Of course, this assumes you eat dinner at a normal average time and go to bed quite a bit later and don't eat all night long. That's why I'm having to kind of change my schedule which used to be eating dinner (especially in the summer) very very late and then going to bed. He says you really need an empty stomach to have it be effective and 300 mgs. is just not enough to do much at all. He sees great results at higher doses so I've got my fingers crossed! Hope that helps.

[bikingjudy]

I am taking 400 mg twice a day, 1 hour before or (if I forget) 2 hours after. I'm surprised that they are talking about going as high as 900 mg because my original doctor said the manufacturer's recommended dose was only 300. They agreed, however, since Dr. Parsons was the first one prescribing it. I'm also trying a new diet with no wheat/flour/sugar/cafein/decaf along with the fruit no-nos in order to get a better handle on this whole diet thing. Good luck to you. I really empathize with everyone who has this terrible thing.

[yvette]

I luckily didn't have the side effects....but it didn't do anything for me either...

I started with the usual=1pill, 3x/day....I bumped it up to double that....2 pills, 3x/day.

It was like nothing....blahhhhh. I evenutally stopped all my meds (required for me to get my interstim) and then never went back any meds on a regular basis.


It's be interesting to see if maybe putting the med into an ecoteric capsule may help?...eh. maybe not. I could maybe try it as I still kept refilling my meds, despite not taking them.....I have at least a 6mo to a year's worth of elmiron in my "drug luggage" (a fancy makeup case with all my med bottles)

unfortunately, my IBS is being a wicked pain in the butt.....and that's my main concern....I'm afraid I'd lose the drug in speedy transit....


and another thought about the GAG layer....too bad they couldn't find a way to topically 'spray' it on the inside of the bladder wall....you know like foam insulation...it would be a little more direct I woudl think.....::::::sigh:::::::

[glassd18]

I haven't tried Elmiron because I have really bad stomach troubles (acid reflux), and I really don't want to aggravate it. Is Cystoprotek more bioavailable than Elmiron because it has worked well for me.

[Angeles]

I have tried Elmiron. It worked for me. I have to stop after 6 months b/c of ongoing headaches.

[Kiki B.]

Well, I am now seeing Dr. Deborah Erickson in conjunction with my regular uro. I will be seeing her again in December, I will try to remember to ask her if there is a theory as to why some people respond to Elmiron and others don't. I have been on it now for 3 1/2 months. I am not noticing any difference. She did tell me to give it at least 6 months to work, and I have heard it can take as much as 12 months. That is something we will be discussing at my next appt.

Interestingly enough, she also diagnosed me with Pelvic Floor Dysfunction. I have probably had that for several years, too. It has actually become more painful since having my Hysterectomy last month. I wonder if that doesn't aggravate the disorder. I now also have to find a PT who specializes in PFD. Question: Does anybody know of any good websites that discuss PFD or are there any articles on here? If someone could let me know, I would really appreciate it.

We discusse doing a Cysto under anesthesia, as I have not had one of those. I've only had the one done where in the office where I was awake. Boy, was that painful. It also didn't help that it was done by a doctor(not my urology NP) who doesn't seem to believe in IC as a diagnosis. If he didn't happen to be out of the office one day, and they just happened to have me see Julie, NP, I would still be seeing Dr. Medley, and he would still be treating me for overactive bladder, which I don't have. It didn't seem to matter to him that for months on end, I kept having burning bladder pain. I had 3 flares in 10 months, had several courses of abx, and I still didn't get any better. Julie was the one who thought of IC and did the PST, which was very positive. Anyway, I digress. Do you think it would be a good idea for me to have Dr. Erickson do the Cysto.? I would be curious to see what she would find since she actually believes that I DO HAVE IC, unlike Dr. Medley.

Thanks, Kaylene

[Kiki B.]

Yvette, I tried a bladder instillation where they put Elmiron into the mixture, as well, and it burned like crazy. I had heard that some people do that to help rebuild the GAG layer faster than the oral medication alone. However, I won't ever do it again with the amount of pain it caused me. I had a very hard time holding the solution in my bladder after that instillation. I did find that the regular instillations worked quite well, as did Methadone for the chronic pain(it cut the number of times I urinate in a day in half).

[MichelleMarie]

Hi all,
I realize that these posts are more than a month old, but I had to add something...
When I was first diagnosed with IC (finally!) in 2003, my uro kick-started my pain relief by giving me instillations of Elmiron. He just used saline (I think) and one dissolved elmiron capsule and instilled it directly. The results were immediate and WONDERFUL! For the first month I had this done twice a week, and it was the first relief I'd had in years...

MichelleMarie

[medicatedapathy]

Pentosan Polysulfate (aka Elmiron) has always had a poor bioavailability. Researcher Deborah Erickson and colleagues now suggest that this is due to the molecular weight of PPS.

Read more at: http://www.medicalnewstoday.com/medicalnews.php?newsid=48765

here is what i dont understand.
i've done the bladder washes where i put elmiron directly into the bladder and it still doesnt work.
:[ my bladder's stupid.

[DaniBelle]

I am so confused and miserable! I went to a women's clinic which specializes in treating IC. My urologist had said if the DMSO treatments didn't work, he advised I go to this place because he'd heard they had a special 'cocktail' instillation which worked well to help women with IC. I went on Thursday and had my 1st instillation a script for Elmiron. I took my first 2 capsules last night. This morning, I woke up to the worst flare up I've had in years! I don't understand. They said it takes Elmiron months to begin working, but I'm wondering if I'm having a reaction to it. My bladder feels like fit's on fire right now and I'm really scared and in pain. I am taking Lortab for the pain, but this clinic only gives scripts for an oral suspension (?). It doesn't work well for pain because it wears off very quickly. I had been taking Lortab 7.5 for 3 months with my urologist and now I basically have nothing for pain. Anyway, I don't know what to do. I should have asked my Urologist to send me to a pain clinic. This clinic said they don't presribe any pain medication past the first week because of their high success rate with their patients. I am suffering here! They also gave me samples to try of 'Desert Harvest' (aloe capsules), 'Cysta-Q' and 'Detrol LA' although I have no problem with incontinence, just constant need to have my bladder empty all the time because even a drop in it is painful,...but now my bladder is empty now and burning up...what do I do!! Go to the ER..this is ridiculous!

Any advice will be helpful!

Dani

[vm]

Did you have an instillation as well? Or did you just get the script for Elmiron? If you got an instillation my guess would be that that might be what has lead to your flare up. Could be a UTI - that can be very common any time we have something inserted into the urethra. You might want to rule that out - just in case. :)

[MakinIT]

My first Uro used Detrol to help him diagnose IC..once I said it was painful he immediately took me off it and added that to his list of YUPs, she has IC. (he was conservative, didn't want to put me through the distention unless he had to, and he wound up having to)

sounds wierd to me. first Elmiron I responded very badly too so my new uro immediatly took me off ( ok...I lost hair almost immediately...vanity maybe but I thought if this is doing this outside, what is happening inside).. Desert Harvest I am severly allergic to...well Aloe ..I took cysto Q...nuthin.
I'm not sure they really have the answers to severe IC'ers. I'm on 120 mgs MS CONTIN 2 x day (ER) plus oxycodone for breakthrough. I take a homeopathic concocotion that is to strenghten my bladder and kidney "meridians" , which does seem to help, and I also take and impressive pharmacy full of other meds. Ugh.

good luck

[glassd18]

I know this isn't much and do I not have any experience with instills or Elmiron. When I'm having a flare I take a teaspoon of baking soda with a small amount of water, mix together and down the hatch. I get relief in about 15 to 20 minutes. It alkalinizes the bladder. This is just one thing I do to calm a flare, but it works for me. Doesn't takes that great, but I'm willing to drink it if I'm hurting enough. I know this is a temporary solution, but it may help to calm things back down to where they were.

[MakinIT]

Every little piece helps!!! But yeah..I'm so sensitive to smells and tastes I would gag...Every time I've had a surgery and they tell you you have to drink like 2 liters of some stuff clean your intestines...I can't get past the first glass...my kids have tasted it and told me I'm a baby. It's not that bad. I've just skipped the liquid (expect I drink a ton of water and put about 1/4 of the packet in) and take the pills.

[shcasmom3]

My daughter, who is five, has IC. She has "the Best" doctor. She is his yougest patient and has been under his care for 1 1/2 years now. When she is having a flare,I give her more Aveeno baths. That helps with the irritation on the outside. Her cocktail seems to be working. She was also given Valium for one of the flares she had awhile ago. Of course, please don't take anything unless you talk to your doctor and/or pharmacist and check for contraindications. Hope that helps.

[liesl]

SACAUSA (or any who have experienced elmiron)- your messages caught my attention. I am new to Elmiron. I am in the middle of my second month on it. I am losing so much hair! I was afraid I got my dads hair genes then I remembered that I am on this medication! I am so skeptical of pharmaceutical companies. I dreaded going on any medication due to my sensitive system, but I was so desperate! How long were you on it? What were your other side effects? Did you experience any improvement? I am so appreciative of any words of caution or personal experiences that you or anyone has had with this drug. I would love for my symptoms to improve, but I am not too hopeful. ..and I do enjoy having hair on my head...did yours grow back when you went off the Elmiron?

[glassd18]

Hi Liesl,

One thing that the company and my uro told me is that the hair loss stops when you discontinue the Elmiron. So yes, your hair should grow back if you stop using it.

[MakinIT]

liesl: My hair started to fall out like within 2 days. I have alot of hair but it is very fine, I woke the second morning and there was this bunch of about 20 hairs and when I brushed it, a bunch started falling. I am incredibly sensitive to anything and when I lost that I wondered what it was doing to my inside. Needless to say, I went off. My new uro asked if I wanted to try it and she got a resounding NO....I think there are now studies out there showing it isn't really effective, but don't quote me on that.

[Claredale]

My uro told me about that baking soda today as well. He said that you had to be careful if you were not supposed to have a lot salt intake. I also read about it in one of my ic books.

[Claredale]

Also about the hairloss. I mentioned this in another thread and also got some advice as well. I started losing my hair when I started the elmiron. I stopped the meds, the hair didn't grow back, but it was at the back of my neck and not so bad. When I started having terrible flares and was on all the meds and no sleep, stress, blah, blah. I started losing my hair and it was more than 20 hairs in my tube. I read up on hair loss and read that it was normal to lose hair and all that, but one time I vaccuumed my bathroom and bedroom and there was so much hair, I just started crying. I would try to hide the patches by wearing ponytails all the time. I was 40!!! Both my prim dr and my derm think that possibly from all the stress of IC is also connected. When I lift my hair up from the back, it looks like a horseshoe. Also around the front of my hairline started thinning. It was like my bangs disappeared. I started taking Fish oil and my derm gave me some ointment and that tar shampoo. Still not much improvement. I finally broke down and ordered a wig off the internet. I was too scared and embarrassed to go to a wig shop. I got this wig and it is really cute. It has a little flip up in the back. I looks like a short shag. I am still using every remedy that I hear about and am going to another derm soon. But the point of my post was that one of our fellow icers said her stylist suggested that she buy this product called Nixium for thinning hair. I bought it at a salon today.

I will start this new remedy tomorrow. But one thing I have to say about wigs...You don't have a bad hair day. They are so different from the one's I remember my grandmother wearing. I feel better than trying to do a comb over like my grandfather used to do!!!

My son is getting married next May and I would really love to go to a salon with all the girls and get my hair done. I haven't had a hair cut in a few years. I was too embarrassed to go to the salon, that I would just trim it myself.

But like my husband said would you rather take your meds and try to function as normally as possible or do you want your hair?

[Zygala87]

Hello. Has anyone taken Elmiron and Algonot Plus at the same time? I'm thinking of doing just that but I need more information. Also I did not know lifting something heavy could cause the feelings of labor pains. Sharp pains that come and go in my bladder area. I did that two days ago. I had to use a pain pill and fell asleep. When I woke up I felt much better. Sure won't do that again. I am new at this. I have not read where lifting heavy weight could cause problems like this. I will be most grateful for any information about these two problems. Ziggy

[MakinIT]

Tracey: I'm sorry, I'm not trying to be insensitive but I know this total dork who pull his pants up over his belly and wear black socks but you can see the hair on his legs..in the summer he wears polyshorts with same black socks and old dress shoes, suspenders....he has the WORST comb over I have ever seen and he is worker for one of my husbands consulting businesses (so I see him all the time) and when you said your grandfather with a comb over I just had this "bing" of this man. His hair is literally combed from his left ear to his right and "glued" down. I am glad you found a nice wig. They have come a long way in that area due to cancer patients (I think) I do see some scary wigs on elderly women and you just want to say "honey, honey, you are beautiful but when was the last time you saw a "beautician" because your hair is crooked.."

Zygala: I've had that sensation but not due to the drug combo you mention. But it's the same thing, sharp pain in my bladder...but I also have this lovely tailbone (SI ) thingy that's way outta whack. They fixed it a month ago with an injection (THAT was fun) but it came back yesterday. I went to stand up and my leg went out. Cool,eh? Felt like some was wacking me with a cattle prod.

[Claredale]

No, I wouldn't think of you being inconsiderate. I still get a laugh about it myself. I remember one time he was asleep on the couch and I walked in. He sat up and his hair was hanging down to his shoulder!

[aprilchen]

I lost my hair when I took it and had other undesirable side effects. There HAS to be something better to treat this that they can come up with.

[Berkshire Road]

Is this a stupid question? How can Elmiron produce so many side effects if it's not being absorbed by the body?

[**Angie**]

I don't think that's a stupid question at all. I can't answer it but it's still a good question. :)

[DaniBelle]

Good question. I've wondered if it works at all. I know 'they' say it takes months to begin repairing the lining of bladder, but I've been taking it for months and still must have at least 4 to 5 instills per week (have more at home in the frig. in case I flare). I don't understand why we should take something if there's no real proof......you know....a real 'study' where i.e, '6 out 10 have found relief and have been able to reduce instillations to once per month'. That's what we'd all love to see. I've read posts where women said they are in 'remission' from I.C. because they are taking Elmiron and staying on the I.C. diet, yet there are three times as many posts where others have been taking the drug for years w/no real improvement. My doctor absolutely believes it does work and should continue it. I was worried about the issue of possible hair loss, but my hair is still the same as before I began taking it...no hair loss. My main question is: "If this is THE medication that's going to repair the bladder lining (along with watching what I eat), why has it not done anything yet...why should I continue taking it? I really trust my doctor, so I will continue taking it as prescribed, but I CAN'T help wonder how it is helping.

[L. Thomas]

I was just taken off elmiron after 6 months and moved to DMSO. Why is Canada so behind the times? Most uros in the US don't do either. Elmiron did not do anything for me except stomach cramps and bowel problems and muscle pain.

You know post like this that really make me think:

My insurance cost $10,000 for family coverage (Cadillac and it is worth it).
I pay about 45% of the cost..employer pays balance).

BUT I can basically go anywhere any time and get quality care and if I am not satisfied I can go somewhere else. I just had a total knee replacement..billed at $28,000 but I paid nothing.

What will government controlled coverage mean to the USA?

Don't get me wrong..I think is sinful that a country so rich in every respect could allow anyone to live in pain and just turn their head away. I just read a post where a meidcare patient could not afford to pay reatil price for instillations (sodium bicar/heparine/lidocaine) because they were not covered by Medicare.


WHAT"'S WRONG WITH THIS PICTURE?????
There just has to be a better way

[MarthaF]

I think that one study I read on the effectiveness of Elmiron showed it was in the range of 38% of patients who used it. There may be later studies but I don't think they show a much larger percentage.

As a comparison there has only been one published study of the effectiveness of antibiotic treatment as compared to placebo. This was done by the U of MD in about 2000. They were unable to find a consistent species of bacteria in the patients they tested (25) but they decided to treat these patients with 6 different antibiotics. They used one, Rifampin, throughout, and at the same time they used 5 different antibiotics each for 3 weeks. In the end 48% of the patients improved and they did not find this as a "significant" enough improvement over the placebo group of 24%. This was published in the Journal of Urology and since then the scientific community has decided that antibiotic treatment is not justified since they are still unable to find bacteria in patients. But 48% is not insignificant to those who experienced it.

Labs still use an agar plate culture that has been in use for over 50 years. It might be more effective if they allowed it to grow for longer than 24 hours or 48 hours since much more than E. coli might show up. We now know that there are many species that take longer to grow, or do not grow without a nutrient to encourage them to appear. The broth culture that is only used in a few labs and one commercial lab, United Medical Lab, McLean, VA. This lab using the broth culture will find many more species of bacteria such as Enterococcus, Staphylococcus, Klebsiealla, among others. These are treatable with the right antibiotic for the right amount of time. In the above research they were using antibiotics in a scattershot approach since they did not have any idea what they were treating. Some did improve but probably needed more time on the right antibiotic. Many patients have had these infections for months or years and they do not clear up in a week or ten days, and it is very important for the pathogen to be isolated and a sensitivity test to be performed on that particular species. Then it may take months of treatment with that antibiotic, but at least they are getting at the cause and not coating the bladder wall.

If interested you might want to look up the study in the Journal of Urology, June, 2000 issue, Vol. 163, No. 6.

Martha F

[DaniBelle]

My strongest complaint (to put it mildly) is the growing number of healthcare 'professionals' (HAH!) who absolutely look like they want to beat you up if you even mention that you are in pain. Nurses in the ER, doctors in the ER, my current pain management 'physician', etc.. absolutely hate to hear that those words, "I am in pain". I can't imagine what torture they put the elderly or can't speak for themselves through. I believe these 'professionals' are just sadists in disguise. I'm so mad and sick of these people, I'm thinking of writing directly to our current surgeon general to express my concern about the lack of compassion and mistreatment by the hands of those who make tons of money off the general public and the insurance companies. I, too, had really good insurance (got it back this year...yea!) in the year when my prior gyn performed 3 surgeries on me (I only needed 1) and my insurance co. had to pay him about 30 thousand dollars through it all. I tried to find a way to get this guy legally, but in my state, malpractice suits are rarely won for the patient. He and his partner put me through 3 years of back and forth saying "You've got nothing left in there (they had removed gyn organs),it must be 'nerve-ghost pain'". Then I'm on to arguing with the pain mgt. doctor saying I still have alot of pain and she thought I was getting the meds and selling them. How degrading to have a surprise pee test (on my 'dime'). What an awful experience. Now that my I.C. is so bad, I was put back with the same pain mgt. doctor and she has not changed, in fact, I think she is even more uncompassionate than before. She doesnt' know what I.C. is, wouldn't pay attention to me when I told her I was having a reaction to a med. she had me on. I had to go to the ER to test my pulmonary system (all was fine). She never apologized and won't take the blame for putting me through taking that medication. The whole time she said it must have been just me, not the med., because it had never happened to any other patient before. As soon as the med. was out of my system and I was taking something else, all the problems disappeared. Go figure! She tells me "It's not like you have cancer, you can't die from I.C. (she can't even pronounce 'interstistial cystitis' and still doesn't know what it is! I feel very uncomfortable in her 'care', but the system of pain mgt. here is very strict and in order for me to change to the best doctor in the center, SHE will have to agree to let me switch. It's sooooo screwed up. My pain is not 100 percent controlled and she knows it. When I told her I had a better level of pain control with 1 extra dose of what I'm currently taking, she didn't say... "Great, finally we've found something to help you"....no, she said, "I'll let you have 2 doses per day". What? You know a patient is comfortable with 30 mg more, and you give her less? I'm convinced she's spiteful and has a "God complex" along with being a robotic you know what. Doctors have taken the oath to "Do no harm". I've been harmed by doctors in the ER and at the pain mgt. center. If I could grade either, I would give them both 'F's. So sick of it. I creep through each day with my husband of 18 years, our 14 and 9 year old boys, barely able to make them dinner (my husband cooks 90 percent of the time), I can't work anymore, and they are getting paid for 'helping me'? I don't think so. The only help I'm getting is through my UroGyno. The doctor is great and my nurse (who does my office instills) cares so much for her patients, she actually calls on her way home from work to check on her patients! This forum is such a great support as well, but it's such a tragedy that those we pay to help us feel better, to heal us as best they can, to alleviate our pain, are not doing their jobs and act as if they could care less. It should be a criminal offense to put all these patients through such pain and stresss. SHAME ON THEM!

[MakinIT]

Wow...lots on this to reply to: L. Thomas...I know what you are saying about the cadillac plan and what happens if the government intervenes and we have one payer plan in this country. I also have a very good plan. Although there are times I miss the mid 90's when we really had perfect health plansIt is truly reprehensible to see how people are "cared" for. I am scared to death to not have insurance and that is half the reason I stay in my marriage. Although, I haven't given much credit and haven't been fair. Another topic.

As for the Ellmiron....I really didn't like the thought of it but I tried. After 2 weeks my hair was coming out in clumps and I wondered what the hell it was doing to my insides. (I was taking the pills) I know I didn't feel any better...in fact, I felt sick.

Oh well...yall have a good week.

I have removed the politics from this post; there are discussion boards where political opinions can be freely discussed. The IC Network is a support forum and needs to be completely impartial.

Thanks.

[Zygala87]

I am ashamed to admit even with a Masters Degree I am still unable to pronounce the word Interstistial. My friend who has IC has told me a number of times how to pronounce it but I'm still not getting it right. I've seen it broken up so one can say it corectly but it has not help me. Can someone pretend I'm in the third grade and help me with the pronouncement. I don't get the in-ter-stish-ul. How is the "stish part sound? I hate to be so stupid. The way my friend says it, if I'm remembering it right, there seems to be a great big "E" sound in it. The way I am saying it sounds like in-ter S-ter- ul. I know that is not right. A very minor problem compared to so may troubles on this site but major to me. Ziggy

[vm]

The "stish" part is like "fish", but with an "st" instead of the "f". :)

Pretend you are saying "in-tur-fish-ul" and then substitue "stish" for the "fish".

[anniepie1976]

OK, this may be a dumb question but is there something we can eat, take or do to make our urine the correct way it needs to be to absorb more of the Elmiron into our bladder?

[Claredale]

Elmiron totally destroyed my hair growth. I lost patches of hair and am now using a wig. I sometimes have promise of new growth (peach fuzz), but not enough to fill in the really bad spots. I need to go to the dermatologist again, but I am spending so many co-pays on uros and at this time orthos since I broke my foot before Christmas and dental appts that since I have the wig, I just don't face it like I should.

I feel that I have good insurance, the co-pays get a little higher every year, but I am so thankful that I have it when I pick up some of these expensive meds. I feel so sorry for older people and watching them deal with medicare... and what forms to feel out. I dread getting old!

Tracey

[aprilchen]

Tracey,

I, too, am really blessed to have good medication insurance. My husband is an officer in the Air Force and he makes great money, but the benefits highly outweigh the negatives (even though he's gone alot). As long as we go through the proper channels for referrals, there are no copays and meds only cost $3 if they don't have them on base at the base pharmacy. If they do have them, then it is free to get them on base.

Good Luck with all that! I used to have to pay a lot of copays before I married Aaron, but not now at least.

Take Care,
April

[MomforGod3]

It's interesting that you all are talking about the Elmiron my new urogyn doesn't really feel that it helps all that much but the funny thing is he didn't take me off it. He also doesn't believe in the instillation I went today and he asked me several times if they really helped me looking at me all funny like, finally I was sooo mad I said "I wish I could tell you no they don't help me but yes they do help some because who wants to self cath. themself over and over pouring medication in their bladder." I know this is bad of me but I wish that they could walk in our shoes for about one hour, being in one of our flares then I think they would have no doubts about our pain or would not question us about some of the things we do. I asked several questions today and didn't really get one good answer. He didn't know why I was flaring didn't know what else I could do for a flare he reprogramed me and said try that "we will see" I hate those words. Have you all experienced that?

[aprilchen]

I know this is bad of me but I wish that they could walk in our shoes for about one hour, being in one of our flares then I think they would have no doubts about our pain or would not question us about some of the things we do. I asked several questions today and didn't really get one good answer. He didn't know why I was flaring didn't know what else I could do for a flare he reprogramed me and said try that "we will see" I hate those words. Have you all experienced that?

Hey,
I have felt that so often. My husband is in the Air Force and until recently I always has to use base doctors for our health insurance to work and pay for stuff. We argued our way into getting me an off-base provider because they never called back about two positive urine cultures, while I sat at home with high fever, chills and nausea. I ended up once having to call an ambulance because Aaron was on a TDY (temporary duty in Japan) for three weeks. At the same time, that day, they had done a CAT Scan and I had a lodged kidney stone in the ureter....but NO ONE bothered to call me back. So PLEASE don't feel alone.

My opinion is that a doctor should have good bedside manner and always listen to YOU, the patient who knows your body better than anyone else. For instance, I am a really hard I.V. stick (have had four PICCs) because of bad veins and kidney disease. I usually tell the nurses where they can get a good vein and if they listen, most succeed....but if they don't, they usually get arrogant and fail.

Don't hang in there with a doctor who doesn't listen well. I have learned this through a blood clot, MRSA Staph infection, too many kidney stones to count, gallbladder disease, hypothyroidism, high blood pressure, allergies, interstitial cystitis, ovarian cysts, migraines (I am probably forgetting something)...and it's discouraging because I am only 26 years old.

It's very depressing at times to not be able to do the things I once did. Does anyone know of a good type of counselor to go to who can listen? I think I am worrying my husband by talking about this SO much and living it everyday! It seems to ruin any good conversations that we have. Please, some thoughts. Does anyone else see a professional to talk? I don't want a Psychiatrist because they will want me to be on anti-depressants and I don't think I can swallow another pill.

Anyway, Good luck with the new doctor. God Bless.

[aprilchen]

I know this is bad of me but I wish that they could walk in our shoes for about one hour, being in one of our flares then I think they would have no doubts about our pain or would not question us about some of the things we do.

Oh, and one more thing. My husband had to take me to the ER the other day before I was diagnosed with IC (just dx on Jan. 18th) and the ER doctor told him that "patients with chronic pain...just never get better...they become addicts and there was no hope for me." The ER doctor told me that right in front of mine and my husband's face. Now, you, as a patient have rights. I went back a couple days later after I made an appointment with the medical director of the emergency room and spoke with her. She is supposed to be writing this complaint up and taking care of it. Right now, we're in constant contact with her and she promises a resolution or I told her no one we knew (which is a lot of military people would ever use their hospital again) and furthermore, I can complain to the (there is an organization that leaves me at the moment), but it is the organization that regulates hospitals....not HIPPA, but some other initials. I can't seem to remember...but anyway, please check around and DO NOT allow yourself to be treated unprofessionally. I feel the same way you do because if someone told me ugly things or, things to appease me such as "We'll see..." I would change doctors in a heartbeat.

Another good thing is that there are plenty of compassionate and understanding doctors out there. So, research them...ask others, etc.

Good Luck!

[MomforGod3]

April you are right I am presently trying to find a new doctor but as you may know not many dr. know about this thing we call "IC" sometimes I would like to call it another name. The funny thing is many times when I go to a new doctor I end up explaining what it means and that really is not good.

[Sonat]

I was just wondering if anyone has ever thought about pain therapy (since urologists don't always believe in the fact that there are a lot of IC-patients suffering from severe pain)?
My doc has soooooooooo many IC-patients and is really caring....
Whenever I go there for my instillations, he asks me: "How are you doing?" Me:"Well, so-so...How are you?" Doc:"Well, thanks, I am actually fine. And if I am fine, we both are fine, right? [then he grins like hell]....It is the cold weather that increases your symptoms, right?...How is the pain?"
And so on...
He never ever questions the fact that some patients are suffering from urgency or frequency, others from pain, others from both...
What is true, however, is that he as an urologist is not really informed about pain medication. I usually do self-tests, trying to find the right dose rate, he just prescribes Tramadol and Elavil or stronger ones.... I think going to someone who is specialized on pain might help, not only in order to find the right pain medications (, which is also an issue...), but also in order to have someone who takes the pain seriously...

Hugs

Sonat

[DaniBelle]

I know exactly what you're talking about. Does the Elmiron work, studies say...maybe not...others say...definitely yes. I think everyone has to give it a try because there's that chance that 1 year down the road...relief! I was worried about the hair loss, but it's not happened at all. I lost alot of hair while on a prior anti-seizure med.. When I changed to a different med., it all grew back. So, needless to say, I was very nervous about the Elmiron....but so far..not problem and it's been about 6 months. Now, I'll get to the movie comment. Ask your Dr. if he has ever seen "The Green Mile". In the movie a security guard (Tom Hanks) has developed a severe urinary tract infection and can barely walk due to the terrible pain. If you've seen the movie, the prisoner with the 'gift for taking the disease or sickness from a sufferer' grabs Tom Hank's hand and takes the infection upon himself, ridding T.H. (the guard) of the infection and pain instantaneously. The look on his face is indescribable. The relief washes over his face. Anyway, long explanation, but my point is that perhaps your doc could watch this scene and realize that what the character in the movie was experiencing is what you experience EVERYDAY! Maybe it will drive the point HOME! Doc's...please take a course on compassion! My pain doc told me "At least you know you won't die...it's not cancer and once when I was in between pain meds (having trouble with first one), this doc told me "You'll just have to DEAL WITH IT". My UroGyno was soooo mad. I am changing to another pain mgt. dr. real soon. That doctor of pain (as I like to call him) is not worthy of anyone's business. CRAZY!!! I hope this helps you. Take care and have a good evening!

DaniBelle

P.S. Get referred ASAP to a pain mgt. specialist. Make SURE they know what IC is!

[SandyRN]

JCAHO is the regulatory commission for the accreditation of hospitals. If anyone has another problem with another rotten ER doctor, contact the AMA, AND JCAHO!

[msent]

I also have insurance which I pay over 300.00 per month in premiums w/ a $1000.00 deductible and my copay on the elmiron is around 100.00 per month. I have been on elmiron since 1999. I understand that it could be much worse; but it is a strain none the less. -- Hair loss: I was very concerned when I first started elmiron (1999) and did not experience any:BUT, now I am really losing alot of hair--Could it take this long?????? I started hair vitamins (which do not really go well w/my bladder)-and started rogaine. I also have just recently reduced my elmiron to twice a day. Has anyone else experienced this? Any suggestions? I consider myself really blessed when read some of the posts describing their symptoms. But I do have alot of discomfort, pain at times, & urgency (my most prevelant in vaginal burning and discomfort, which unfortunately I experience every day) so I am really afraid to totally stop elmiron. Anyone have any suggestions or experience in this?
Thanks to any and all who respond.

[Zygala87]

Hello MSent. I have been on Elmiron for about 6 months. My hair has been colored arburn for many years. I started hair lost last month so had my hair cut short. I got to thinking and believe the dye was not good for my body and my true color is gray now that I am older. I had to have it dyed about every three weeks. I decided this was all too much. Bad chemicals in my body, sitting for two hours in a chair, the cost etc. I bought a wig, Very pretty, gray mixed with auburn, cut my hair a few inches long and will wait it out until my own hair grows longer and I can get rid of the color. I wear a nice scarf around the house. Elmiron is working for me. I would not go off of it if I stayed bald for the rest of my life. Many people only have mild hair loss and most friends can not even tell it. A shorter cut seems to work best in this case. If younger people are reading this and color their hair just for the different look, I would consider going natural. The poison in the dye can not be good for us. Hug, Ziggy

[chris0710sct]

Can someone please tell me what thier doctor recommends for pain> I was in so much pain for the last few days and called my uroligist he won't give his IC patients anything for pain in fear that that will lead to another problem addiction which is understandable but what I don't get is letting someone suffer. Please is there anything out there that help with pain. I do the lidocaine/elmiron installations but that doesn't work for long only about an hour . I mentioned Marcaine to him because what I have read here and he wasn't even sure I could use that until I told him other people do. I really am freaking out.

[MarthaF]

I went back and read the posts mentioning the response rate to Elmiron and was surprised to see one listing 19%! Of course,I knew the company itself admitted to a 38% rate.

I had reason to go back and read the one and only study that has been done on antibiotic treatment for IC-diagnosed patients. As some of you may not know this study was done at the U of MD (year - 2000) and involved 50 patients. While the researchers could not find any consistent bacteria they decided to treat with 5 different antibiotics (thinking they would cover any bacteria that might be present and missed by their culturing). They used antibiotic treatment on 25 and a placebo on 25. They administered each antibiotic for 3 weeks at a time until all 5 had been administered. They used Rifampin for the whole time. In the end the results showed a 48% improvement among the antibiotic group and 24% improvement among the placebo group. ydecided that the rate of improvement for the antibiotic group was not significant enough over the placebo group to represent "a major advance in IC treatment." I would say the 48% rate was pretty impressive in view of the Elmiron rates quoted above!!

But there were several shortcomings involved in this study: they did not find any bacteria so had no idea what they were treating! Yet, if 48% improved there must have been some bacterial component in these patients. Also, those of us who have had success with antibiotic treatment know that 3 weeks, even on the right antibiotc for the bacteria we have been found to have, is not enough. It usually takes many months - after all most of us have had symptoms for years and the bacteria can become firmly entrenched. Many have had short courses of antibiotics but that is not enough to gauge success.

The key is to have a very extensive culture done and we have found that the broth culture that uses a nutrient to encourage growth of fastidious or slow-growing organisms is the best. This may take a week so show bacteria that are not found on the typical lab agar plate culture grown for 24-48 hours. United Medical Lab in McLean, VA will do this kind of culture and report the results along with a sensitivity test to show the best antibiotic choices. Some of the antibiotics used in the above study would not have treated the bacterial species I was found to have so it would have been a waste. Just using antibiotics in a scattershot way is not a very scientific method, yet this was published in the Journal of Urology and evidently considered to be the ultimate test of antibiotic theory.

If patients are willing to try a drug that ranges from 19-38% effectiveness why not have a broth culture to see if there are bacteria present, and if so, treat with the right antibiotic for at least a month or two. The chances are the right antibiotic would provide a much greater improvement rate than even 48%. The medical/scientific community has not made nearly enough efforts to find whether bacteria are present. There are now DNA tests being developed that some researchers know will improve bacterial testing:

http://jcm.asm.org/cgi/content/abstract/44/2/561

This test is not on the market as yet, but the broth is available and will find much more than the current agar plate. A patient can order the test herself from United Medical Lab (703-356-4422). If you are happy with Elmiron, fine, but if you are not, a broth culture is worth investigating. Antibiotics are not without side effects, but these can be controlled with judicious use, anti-yeast control and probiotics taken along with them. They have been in use much longer than Elmiron.

Martha F

[Claredale]

Can someone please tell me what thier doctor recommends for pain> I was in so much pain for the last few days and called my uroligist he won't give his IC patients anything for pain in fear that that will lead to another problem addiction which is understandable but what I don't get is letting someone suffer. Please is there anything out there that help with pain. I do the lidocaine/elmiron installations but that doesn't work for long only about an hour . I mentioned Marcaine to him because what I have read here and he wasn't even sure I could use that until I told him other people do. I really am freaking out.


Check the pain management forum. Alot of your questions will be answered. Take some of the information you read to your doctor. You need to understand that taking pain meds do no cause dependancy when you are dealing with IC. Alot of people with IC use pain meds just to try to live as normal a life as possible just like someone with diabetes has to use insulin everyday. I am not saying that no one becomes dependant, but the odds are really so low and the doctors that understand the pain management program keep close watch on us. I would also search out doctors that don't push their beliefs that pain meds will always lead to dependancy, unless it is considered dependancy to not want to live in pain. I took Elmiron for several months and had to quit taking it since I wasn't noticing any benefit and I was losing my hair by the handful. I am wearing a wig and my hair is slowly growing back in.

Good luck!
Tracey

[Sandra 41]

I'm looking for information from people who have tried pelvic floor therapy. Has anyone been to the training using the Stanford Protocol?
Sandra 41

[Grandma Susie]

I've been on it for 8 months and during that time I develped Hunner's ulcers had them lasered and developed them again 6 mos. after that. 2 surgery's and horrible complication after this second one. Had such pain none of my pain medsl would work at all and ended up in Emergency with a lot of Morphine to quiet it down. Anyway I think the Elmiron is hard on your stomach and I don't need more ulcers. My doc won't let me stop it. Don't know what to do.:confused:

[RAS6]

I was on Elmiron for 7 months and had no relief from my multiple symptoms. I also had some hair thinning (maybe from the IC diet and stopping multi vitamins) and was sick on a regular basis throwing up or just having little appetite. I starting seeing an IC specialist as opposed to a general Urologist and he let me stopElmiron. The cost was becoming an issue as well, especially for a drug that wasn't doing any good. Because he really understands IC, my Doctor also understands the meds and he is up to date with trials like the ones mentioned at the beginning of this thread. I am thankful that Elmiron has helped many people here. unfortunately, it didn't work for me.

[Sandra 41]

I also have insurance which I pay over 300.00 per month in premiums w/ a $1000.00 deductible and my copay on the elmiron is around 100.00 per month. I have been on elmiron since 1999. I understand that it could be much worse; but it is a strain none the less. -- Hair loss: I was very concerned when I first started elmiron (1999) and did not experience any:BUT, now I am really losing alot of hair--Could it take this long?????? I started hair vitamins (which do not really go well w/my bladder)-and started rogaine. I also have just recently reduced my elmiron to twice a day. Has anyone else experienced this? Any suggestions? I consider myself really blessed when read some of the posts describing their symptoms. But I do have alot of discomfort, pain at times, & urgency (my most prevelant in vaginal burning and discomfort, which unfortunately I experience every day) so I am really afraid to totally stop elmiron. Anyone have any suggestions or experience in this?
Thanks to any and all who respond.

I have been on elmiron for several years and like you , do not want to stop in case it is helping me without my knowing it. Does that make sense? I did stop for a period of about 6 months when I was working with a nutritionist. That didn't work and symtoms seemed to increase, so I went back to elmiron. However I don't have the side effects that you mention.
Sandra 41

[Sandra 41]

I've been on it for 8 months and during that time I develped Hunner's ulcers had them lasered and developed them again 6 mos. after that. 2 surgery's and horrible complication after this second one. Had such pain none of my pain medsl would work at all and ended up in Emergency with a lot of Morphine to quiet it down. Anyway I think the Elmiron is hard on your stomach and I don't need more ulcers. My doc won't let me stop it. Don't know what to do.:confused:

I have been on elmiron for several years and have had no side effects. I don't knnow if it helps me as I still have the symtoms. I did stop for about 6 Sandra 41

[Grandma Susie]

I've had pelvic floor treatments from a very well trained physical therapist and she really helped me to identify those muscles and taught me how to do self therapy. I've been through it twice for about 6-8 weeks each. Once you learn how to recognize muscle pain from bladder pain you can tell where the pain is from. Doctors are really fast to think it is all in the muscles and I DO have fibromyalgia so that complicates things a lot! I recommend it and you will learn a lot. It will help you be able to relax those muscles which tighten up from pain of course.
Good luck!

[nicolagoddard]

I started using elmiron a year after my ic first started. Within a month or so I was so much improved. After 2 years of use I felt like a normal person and ate and drank anything I liked. Coke, alchol, tomatoes, onions. Just anything. I have now been on it 4 years and out of the blue I have had a flare up, which has now lasted for 6 weeks. So I wonder, did I just go into remission coincidently or did the elmiron work!!!???? I am still taking it cos Im scared to go off it. I was also lucky in the side effects department. Had none apart from a bit more hair on the hair brush.

[ICNDonna]

Nicola, I suggest you get yourself back on an IC diet until your symptoms are better.

Donna

[lizzienewyork]

The only thing I have ever taken for any IC symptoms are Aloe Vera capsules made by Desert Harvest (www.desertharvest.com) and Cystoprotek (www.algonot.com). I began taking them in late Jan. 07 and I felt better within a week, MUCH better within a month, and after 4 months (combined with IC diet), I have no sypmtoms and I eat and drink (in moderation) whatever I please (but no spicy foods and NO MSG, therefore no Chinese food).

[justice4j]

Hi Everyone,

I just joined the boards about a week ago. I really can no longer afford Elmiron. I decided to decrease the dose and go on CystoProtek and Aloe.

I have had a lengthy remission with an occasional flare, and bad ones only 2-4 times a year. I only use instillations when I have a flare, again because of the expense. They work very well. What I find really interesting about this discussion is my dosages of both Elmiron and Atarax are higher thatn most:

Elmiron 300 mg 2x per day
Atarax 100 mg at bedtime

Atarax 25-50 mg every 4 hours if needed for allergies.

You'll probably gasp but....it took 2 maybe 2 1/2 years to work up to these doses. I also DRINK CAFFEINATED COFFEE EVERY DAY and almost always have a large cup with any day tiime Atarax. I get mildly sleepy, but can still function.

My theory.... it's either both the large doses of E and A, or it's mostly the A.
I'm beginning to think it's good old inexpensive Atarax. Reason being, that when I first began to feel a lot better was when I started religiously taking Atarax. My uro allowed me to increase the dose to the high end of therapeutic range. I'm really wondering and hoping that this is the real reason for my success in managing IC.

Believe me, there were plenty of days spent in bed, hardly able to walk, horrible back and buttock nerve pain, and you name a symptom I had it. My uro even had the Drs in his fellowship talk to me because he wanted to encouraage them that there is success in treating severe IC, because I'm an example of that.

I'm really interested in your opinions. Because I've been doing so well, I haven't read a lot until now, of the new findings on Elmiron, IC treatment, etc.
Jan

[purpleviolet]

Dear Jan,

That is quite a story about atarax, but many times I see people respond to atarax, but they don't clarifiy the allergy bit. Do you have immediate food or air/pollen allergies such that you get asthma, hives or a stuffy/runny nose or do you get stomache ache or diarrehea from something so that you know you have immediate allergies or do you know thru dilegent testing that you have delayed food allergies? The reason I'm asking is because I don't think think I have these type of allergies so I never try atarax consisitently or at a high dose but if I knew that you were similar to me then I would try it, but if in fact you do know that you have allergies then it would make sense that your IC is connected to allergies and so people with allergies would have a good reason to try what you do. (There are natural allergy remedies such as quercitin, rosemary, butterbur, stinging nettle, and other herbs, but I have no idea if they are as powerful as atarax) Thanks, PV

[justice4j]

PV,
Yes, I have the usual symptoms of allergies to enviornmental things, like pollen, weeds, etc. I am really sensitive to smells, for example, I can't be in a place that sells tires. I get a bad headache almost immediately, and feel weird. I have been tested for food allergies, but I'm kind of a brat and don't limit my intake of eggs - which I'm supposedly allergic too. I hardly ever restrict my diet. The one thing I strictly adhere to is NO ARTIFICIAL SWEETENERS WHATSOEVER! That gives me horrible IC symptoms and I'm told it blocks the action of Elmiron. I believe it. The other thing that sets me off is blueberries. I can only eat them in small quantities. But, strawberries, blackberries, and raspberries are just fine.

I notice you use chamomile tea. I had a very bad IC reaction to chamomile tea, but it was the grocery store variety. I'm told it's basically a weed, so that is reason enough for me to stay away, no problem.

I am having to experiment with cutting my Elmiron dose, and would not even think of it except that I have such a high co-pay for it - $250 per month for 180 capsules. My E dose was raised over a period of about 18 months, but I'm guessing here because that was over 6 years ago. I started with the standard 100 mg. 3x a day. I have been taking 300 mg 2x a day, with my uro's approval. I really hate to cut the dose but as I said, I don't really have a choice.

I would try Atarax if I were you. It is a very inexpensive, but highly effective drug. I'm hoping it will keep things at bay with reducing the dose of E. Only time will tell. Hope that helps. Write me again with any questions or comments you may have. Jan

[lan]

My IC doctor was very adament about only introducing one medication at a time. When a doctor prescribes two or more medications at the same time (like elavil and elmiron, or atarax and elmiron) it is impossibe to know what is helping (or not helping). My doctor only prescribed Elavil for me, and since that seems to be helping, I am not going to ask for anything else at this point. But if the Elavil didn't help, I could ask him to add something else (like atarax or Elmiron). This is my personal opinion, but based on what my doctor told me, I don't think it would make sense to start of with just Elmiron since Elmiron takes up to 6 months to start working - but I wonder why more doctors don't just start with elavil or atarax (since they work relatively quickly) and then add Elmiron if needed? At least then you would know what was helping your symtoms. Linda

[ads]

Jan,
It was so interesting you said chamomile tea caused a IC reaction with you. I don't have any diet flares (yes I tried the IC diet for three months no cheating wanted to save my job, then another attempt later), but the chamomile tea makes my heart beat fast and makes me sick to my stomach. I bought it in a decaf box and one of the more expensive tea brands TAO or something like that. I have tried it again and again from different health stores because it is suppose to be relaxing and good for a person, but it just makes me feel badly. I can drink coffee and nothing happens to me.

Your comments about the allergy and chamomile tea is very interesting. I have a lot of seasonal nasal allergies that turned to asthma when no longer could take antihistamines due to the IC. There has never been a time my nose hasn't run unless the ground it covered with plenty of snow and no mold my housing environment. Even when I was a kid, kleenex in the pocket. Thank you for giving me a new view point on this chamomile mystery -- thougt I was crazy for years :dizzy:

ads




PV,
...I notice you use chamomile tea. I had a very bad IC reaction to chamomile tea, but it was the grocery store variety. I'm told it's basically a weed, so that is reason enough for me to stay away, no problem...
Jan

[Wolfe]

To j56:
I agree that Atarax is usually the quickest thing to bring relief, but I do think people should take the Elmiron eventually if they can tolerate it and afford it. Because the Atarax is more about treating our symptoms, when the Elmiron is more about protecting the bladder from further harm and deterioration, preserving it for future use, so to speak.

I too drink one cup of coffee each morning (with Prelief, for additional protection from the acid) and I eat pretty much what I want. In fact, because of the Elmiron, which I've been taking forever, the only things that really bother me are orange juice, vitamin tablets and antidepressants. Whatever the heck is in antidepressants inflames my bladder something awful!

[charleneb]

What makes it so difficult to evaluate any medicine with IC is that our symptoms naturally wax and wane, and often IC'ers go through brief periods of complete remission, as well.

I guess that's why they have the placebo in studies, too, to try to figure that part out...so when you read that Elmiron helped 19%, that sounds pretty good, at least worth a good try, until you hear that the placebo rate is similar to that....then you have second thoughts.

I wish that they would (very soon) have some very large, long (at least one year, preferably 2 or 3 years) studies on Elmiron, and studies that are not supported in any way by any drug company, either the makers of Elmiron or competitors. So that we could be sure things are impartial. I wish that they would involve hundreds of IC patients, and would make sure that nothing changed during the course of the study - no other meds, no changes to diet or lifestyle habits, etc. It would be really hard to set those studies up, but I would like a more definitive answer to be available to us.

If the newer studies hold up - if Elmiron is found to be not much more effective than placebo with larger studies - then I think for certain it should fall out of favor as an IC treatment. It should always be available to anyone who wants it, but if it truly has such a low effectiveness rate, barely over placebo, then it shouldn't be a mainstay of IC treatment.

I am glad to hear that your urologist does not prescribe Elmiron routinely. I will be very happy when I hear that is the case with most urologists.

Blessings,
Lori


I just started this Elmiron one week tomorrow. I feel signs of ulcers since I have had a ulcer in the past I'm sure of the symtoms. Reading all the blogs, I wonder if it makes any sense to continue a drug that most post don't work. I don't have burnings etc I just have to go frequently. I'm also trying the diet. I already eat healthy and no processed foods.
I do like the doctor that I'm seeing, him and his assistant are so through. I waited 2 hrs for my second appt. But when you are in there you feel so comfortable and feel they are so knowledgeable and make sure you understand exactly what proceedures they are proforming. So I have to say I trust this doctor and I guess I will continue but I also don't what to get an ulcer. The only side affect I really noticed and that I have been really tired since being on the drug one week. Did you expierence that?

[lizzienewyork]

i have been told by a leading researcher in this field that doctors give out Elmiron "because they have nothing else to give out." Direct quote. While you are waiting to see if it works for you, look into natural supplements that have had great results for many people and are on sale on this site: They are made with all natural high quality ingredients, DESIGNED EXCLUSIVELY for people with IC. I have read somewhere on this site, I believe, that Cystoprotek works as well as ELmiron. I think that means that Cystoprotek works as well as Elmiron WHEN Elmiron works at all. Doctors are not big fans of supplements because most doctors don't have the training or the imagination to look beyond the FDA-medical model and they are scornful or skeptical (at the best!) of patients who try these "kooky" "unregulated" things. The best of the best doctors are skeptical if not downright hostile to supplements. They would rather we take their FDA approved drugs, even if they don't work for most people. Read about Aloe Vera Capsules by Desert Harvest and Cystoprotek (both popular with many people on this site!) on this website or on their respective websites (www.desertharvest.com + www.algonot.com).
Also, try drinking water with a PH of 7 and above -- ie Evian and Fiji or HI PH water sold in Whole Foods. Tap water has a PH below 7 and is therefore acidic and therefore an irritant to the bladder. Stick with the diet. No caffeine, no tea, no fruit (except try blueberries and honeydew and see if they agree with you--everyone is different!), no sodas, no hard cheeses, no processed junk, NO SPICES -- but herbs can be fine.
There is much wisdom and experience on this site!

[justice4j]

Hi,
I have to say I have had really good results with Elmiron. I've been taking it for about 7 years w/o any break. I have flares maybe 2-3 times a year, most of which I can get back under control in 2- 7 days. I also take Atarax. I started CystoProtek and Aloe at the same time. I had a reaction to one or both of them That's what's bad about the shotgun approach. I'm only thinking of trying CystoProtek again because of the cost of Elmiron. For me, it's $250 co-pay monthly even with Rx coverage. Jan

[blendno14]

For me, it's $250 co-pay monthly even with Rx coverage

I'm so sorry, this makes me SO sick.:cussing: In Italy you get it as an over-the-counter-product for appr. 60 EUR/Moth without any prescription. If you have anybody travelling there.... I still, after 2 years, can't believe how much money is made of this.....Sorry for this worthless off-topic comment, it's just so unfair.

[LeeAnn]

I honestly feel that Elmiron has helped me quite a bit.

Originally I began taking it 4 years ago. I took it for one year & saw no benefits so I quit. With that said, I was not following the IC diet AT ALL. I had never heard of it. I drank usually one soda per day and at least one cup of coffee. I also ate tons of fruit, nuts, and soy. I have since learned that all of these things are irritants.

After changing my diet, I thought I'd retry Elmiron. It is supposed to help coat the bladder and I figured my new diet was no longer "stripping" my bladder of this coating.

My symptoms initially improved with the diet but I further improved with Elmiron. I keep extremely detailed records so I firmly believe this to be true.

About two weeks ago I had an insurance snafu so I had to go without Elmiron for TEN whole days. In that ten days my average frequency went from 10 times a day to 18. My diet did not change. I've now been back on the drug for four days and my frequency is slowly coming back down.

Elmiron is a drug that only claims to help between 20-33% of people with IC. That number seems low, but it's really no lower than most therapies for IC. What stinks about IC is that there's not one big cure or therapy that works for everyone and that makes it really frustrating. Not everything works for everyone.

The first time I took Elmiron for a year I was upset that I'd spent all that money for nothing. But now I realize it couldn't help me while I was working against it by drinking Diet Coke and coffee every day (among other things). Basically, it couldn't put out the fire while I was busy fueling it with more highly acidic foods.

I think the IC diet has probably helped more people than anything but I dont' know what the research says on that. At least it's free!

Once I heard about the diet I was resistance for a while b/c I have a minor in chemistry and it makes no sense to me that we can't eat acidic foods. Almost ALL foods are acidic. And virtually all beverages, including milk. The body is supposed to buffer these acids with substances such as calcium. So I just didn't "believe" in it b/c the body is not supposed to be bothered by these weak acids (unless you have stomach ulcers). But I finally got desperate enough to listen to what everyone was saying and you guys were all right! The diet is absolutely KEY.

I think when researchers finally "discover" what causes IC, I think part of our problem is going to be that our bodies don't correctly buffer acids the way it should---which would perhaps be considered a metabolic disease. I don't think that's the entire problem, but I think it's part of the problem. Perhaps our waste products are not properly buffered and are left too acidic and destroy our bladder lining and cause pain.

Just an idea.

[Annie2]

I, too, have success with Elmiron. I did not use the "shotgun" approach as others described, but instead added one thing at a time so I would know whether or not something helped or not and there would be no confusion about my results. The first step was carefully following the diet. I started feeling a little better after about 2-3 weeks on the diet and then began the long process of discovering my own personal triggers. I did not begin taking Elmiron until 5 1/2 months after beginning the diet. I added nothing else and changed nothing for almost a year after beginning Elmiron. I first noticed significant improvement at about 3 months into taking Elmiron, but it took a full 9 months of taking it before I felt the full benefits. It helps me a great deal. Though I had clear benefits from Elmiron, after a year on it I still had some minor discomfort so I added Elavil. That took care of the remainder of my symptoms and I was feeling great. Because I had to have surgery (3 1/2 years after starting Elmiron), I stopped the Elmiron for a period of time before and after my procedure. I was glad when I could safely resume taking it as I was beginning to experience an increase in symptoms. Because I tested one med and treatment at a time and waited quite awhile before trying another med or treatment, I know there is no doubt or question that Elmiron helps me tremendously.

It is truly unfortunate we all don't respond well to the same meds or treatments. If so, treatment would be SO MUCH easier and each of us would not have to go through the trial and error process! There are certainly those who absolutely cannot tolerate Elmiron. For those of us who do have success with this medication, it is a God-send. I am so glad I gave it a try and stuck with it LONG ENOUGH to discover, without a doubt, how very much it helps me. Each of us, guided by our doctors, must make or own decision about whether or not it is right for us to give Elmiron a try.

[Annie2]

I, too, have success with Elmiron. I did not use the "shotgun" approach as others described, but instead added one thing at a time so I would know whether or not something helped or not and there would be no confusion about my results. The first step was carefully following the diet. I started feeling a little better after about 2-3 weeks on the diet and then began the long process of discovering my own personal triggers. I did not begin taking Elmiron until 5 1/2 months after beginning the diet. I added nothing else and changed nothing for almost a year after beginning Elmiron. I first noticed significant improvement at about 3 months into taking Elmiron, but it took a full 9 months of taking it before I felt the full benefits. It helps me a great deal. Though I had clear benefits from Elmiron, after a year on it I still had some minor discomfort so I added Elavil. That took care of the remainder of my symptoms and I was feeling great. Because I had to have surgery (3 1/2 years after starting Elmiron), I stopped the Elmiron for a period of time before and after my procedure. I was glad when I could safely resume taking it as I was beginning to experience an increase in symptoms. Because I tested one med and treatment at a time and waited quite awhile before trying another med or treatment, I know there is no doubt or question that Elmiron helps me tremendously.

It is truly unfortunate we all don't respond well to the same meds or treatments. If so, treatment would be SO MUCH easier and each of us would not have to go through the trial and error process! There are certainly those who absolutely cannot tolerate Elmiron. For those of us who do have success with this medication, it is a God-send. I am so glad I gave it a try and stuck with it LONG ENOUGH to discover, without a doubt, how very much it helps me. Each of us, guided by our doctors, must make our own decision about whether or not it is right for us to give Elmiron a try.

[lngo2007]

I have been living with IC disorder for 15 years. Elmiron was only working for me in my first few year of IC. I woke up at least 5 to 7 times at night to empty my bladder. It is very tough for me to keep my full time job during the day because of lacking sleep at night.
I have been trying Pelvic physical therapy, Acupuncture...etc but none of these treatments seemed to work for my bladder after living 15 years on it.
I just went to see my Urology doctor recently and he suggested I should have another cystoscopy even though I do not want to have this procedure any more.
I already had multiple times of this procedure in the past years with several doctors. They all said I had IC disorder.
I don't know what I should try next. Please advice if you know any new treatment for this disease. Thanks,

[MarthaF]

HI,

This is not a new therapy but may be one you haven't heard of. This is based on the fact that many have species of bacteria (one of many is possible) that are causing symptoms. If so a lab test will show which antibiotics might be helpful.

I won't go into a lengthy description here since I have written a fairly comprehensive article after pulling together information that is already on the internet but scattered. It includes a history, description of the diagnosis and treatment, research, and success stories. If you are interested please send me a private message or email me and I will give you the link to the article. I am not a medical professional and this is for information only. But there is information about a lab for extensive testing and a professional who is qualified to treat no matter where you live. Most doctors do not know of this or choose to use it. None of the meds used is new or experimental.

I am a success story but I have asked 4 other patients to write theirs and included them.

Martha F (mfmidlo@aol.com)

[charleneb]

yes i am interested.

[foofie]

Elmiron seems to be helping me a bit, although my naturopathic supplement helps me more. Interestingly, I always take my Elmiron with milk. I've always taken any pills with milk to keep my stomach from being irritated unless the prescription says not to take with dairy. Maybe you're on to something here. The milk helps the Elmiron get to where it needs to go?!?!?

[KSE711]

Who is the urologist that was helpful in Tampa Bay?

Thanks, Karen

[breannavich]

I have just been taking Elmiron since January and was really excited when I was approved for financial aid..it's kind of depressing to hear that it might not really be the miracle drug it's (sometimes) made out to be. I wonder what will come next.

[nan55]

I'm suppose to start taking Elmiron for 6 months but my question is has
anyone had hair loss? I noticed it's one of the symptoms. I also noticed
when I was on vacation visiting family, I didn't have any symptoms.
It was only for 4 days and it was stressful flying across country but I
felt much better than I do at home. If I'm on my feet to long (I stand at
my job for hours) my symptoms get worse.
Any ideas?
Nan