Elmiron tidbit

[talksick]

Hey all,
I just went to urologist today. I had stopped taking the amitriphyline but kept on elmiron for 6 months and my bladder got worse. Went to see urologist and he totally dissed Elmiron...(it was kinda funny to hear a doc be negative about a drug).

He was like yeah I don't think Elmiron does anything. I told him that when I first started taking it I also started taking the amitriptyline so I couldn't really tell what was working. And he smiled and said yeah....I think thats why they (meaning the producers of Elmiron) recommend that you start patients on other meds as well. I won't say who my doc is....(but he is well known in the IC community). So, I just thought it was interesting that one of the prominent urologists in the IC community seems to have lost faith in Elmiron.
Kim

[tabasco32]

no way! well what are we taking it for then? that's not fair that it won't work since this is the only thing I need to look foward to.

[ICNDonna]

Tabasco, please don't give up on the elmiron yet. There are many who have reported that their symptoms are well controlled by elmiron.

Donna

[traceann]

tabasco, I agree with Donna - don't give up, it definitely helped me! I do think it's a good idea to know all we can about the meds etc. What works for some, doesn't work for others, seems to be the nature of the beast, lol!! I had really great results with it, my combo was just Elmiron, hydroxyzine and Ditropan for spasms.

Just remember what works for one, doesn't work for others. We see it around here all the time, Elmiron may work great for one, and another person who's on the same med combo or regimen, etc - it doesn't work for. So don't discount it yet! ;)

I do find it refreshing though, that a doctor was willing to voice his real opinion on a Rx'd med!! LOL!!! :)

[talksick]

Hey Tabasco,
I didn't mean to say for sure that it doesn't work for everyone. I just thought it was interesting that one of the top docs in the IC world thinks it has little value. (Which would suggest to me that for the majority of people it isn't helpful.)

But that doesn't mean that the results are the same for everyone. Some people seem to find it helpful. My philosophy is.....why not give it a try. If you do happen to be one of the people it works for then thats great! Also, it looks like it may be more effective if its instilled into your bladder rather than taking it orally? So if it doesn't work for you orally I guess you could try that.
Kim

[meme]

I found that taking Elmiron has really helped me. I was on it by itself for about six months and I have noticed that it helps more the longer I take it. I am still having flares though for no apparent reason and was getting really depressed so my doctor put me on Elavil also. I have noticed a big difference with the two drugs together. I have had fewer flares since and I have been able to control them better. Its let me be a lot more social lately. Anyway, don't give up on the Elmiron yet, like they said different drugs and different drug combos work differently for all of us.
Leah

[tabasco32]

the only thing about elmiron I don't like is that it is a anticuagulant

[traceann]

From what I have read here on the site, in the Doc Q&A section is that it's not a problem - here's an excerpt from the Q&A with Dr. L. Parsons, found here: http://www.ic-network.com/guestlectures/parsonstranscript.html

Blood thinning - The package insert on IC is loaded with a warning about it's blood thinning effects. Unfortunately, the package insert was written for the IV form of Elmiron, which is 40 times the dose of an oral pill. The oral medication has no blood thinning effect whatsoever that can be detected. So, I believe that it is completely safe to take with aspirin, motrin and coumadin.

Hope that helps a little bit!! ;)

[Susie2271]

I didn't know that about the blood thinning part of Elmiron. I think that's had me worried the most, so good to know. I recently had two biopsies for skin cancer check and dental work and didn't take the medication those mornings.

Is anyone taking the medication out of the capsule and mixing it with water? I've been doing this since I started taking it because I'm so prone to headaches. Now I'm thinking -- what if I'm not getting all of the medication I need? BUT I still continue because I hate sick headaches.

[iceprincess]

dear god, don't scare me like that! i was just put on elmiron and am hoping it is my saving grace!! lol! cross your fingers for me ladies...

xoxoxoxo
beth

[traceann]

I used to take it out of the capsule due to heartburn, and it doesn't affect the med absorbtion that I am aware of, the capsule is just the vehicle to hold the powder together. ;) Since it's not a time release med or anything like that my understanding is it doesn't interfere with it's effectiveness. :)

I too was worried in the beginning about the "blood thinning" properties as I took Motrin quite often (for bladder pain and menstrual cramps), until I started researching and found that article I posted. I had even asked my doc about it and he said he wasn't aware of that being a problem or issue with the medication. I am glad that information is helpful!!! :) :) :)

[Susie2271]

Thank goodness. I've been opening the capsule over a dixie cup and pouring 1 ounce of water into that (the advice from the Dr. Parson transcript). I've gotten a little powder on my finger from time to time. That's why I was worried about not having taken all of a dose.

My mom's doctor passed along to me that if I read the side effects for aspirin, for penicillin, I wouldn't want to take those either! I, too, am hopeful this will give me a better quality of life.

I take hydroxyzine pamoate (spelling?) at night -- 25 mg. That stuff seems to be working well. I only get up maybe 2 times a night! My dog (Yorkie/Chihuahua mix) has had to adjust now. She used to get up for some water with me since I was up so much. I had to bring a water bowl in our bedroom bath. Well, didn't have to but otherwise she wants out of the room for water. Something other than my bladder then would keep me up if I didn't. :lmao: Yes, Kaysie is spoiled.

[Trishann]

I wish I could dump all my medication out and never take it again but I know that is impossible. I miss taking elmiron couple of times, and I did suffer for it. My husband alway know when I miss my medicine because I start hurting and having spasm more. I only take elmiron twice a day because I get sick if I take it three time a day and I still can tell the difference. I am not promoting elmiron because it doesn't help everyone, but as for me it does. I would be terrify to get off of it completely. It's not a completely healing medicine but it helps me to survive. :)

Hugs, Trishann

[Tracey5399]

I agree with tracey and trish the elmiron is definitly helping me. I take 2 twice a day out of the capsule w/water. also the hydroxyzine. My symptoms are not gone but they are definitly more managble these days.
It took quite awhile for the Elmiron to start really helping, i know it doesn't help everyone and thats really a shame. But it's also a shame that i have seen plenty of people state there doctor doesn't have the highest regards for it either. well i thank god every day that my Uro ( at the beginning ) couldn't get them in me fast enough.
When elmiron is taken oraly it is very rare to have any problems w/the blood thinning part. You can talk to your doctor and have a very simple test to keep it monitored, but it is harmless.

Good luck,
Tracey

[kat]

It's unfortunate that often we know more than our doctors about this condition. My doctor here in South Florida treats many IC patients but didn't know about this network or the IC diet, other than not to eat acidic foods. I copied some stuff for him and sent it to him. He was happy to be informed. At least he's open to learning and doesn't think he's God. When I tried to get off Elmiron I really started to suffer again and it took me a while to get back to where I was when I started taking it again. It definitely has helped me but it took a long time to build up to where I was before.

[HURTENJILL]

Hi there.... Ihave been taking elmiron for about a year ...I take 100mg 2 times a day... I also take it out of the capsule becauseit caused horrible acid reflux, and I was bloated all the time. My doc said to take it out of the capsule. That really helped my Acid Reflux stop. I was origanally prescribed to take 3 capsules a day, but my hair started falling out in glumps and I would get sores on my neck, in my nose and ears and they would not heal for 5 to 7 months. The doc told me to cut back. If I am having bad flares, I do take 3 times a day. I have to deal with the sores and my hair falling out anyway... but it's not as bad if I only take 2 a day. I also bruise very easily and my orthapedic doctor for my back, just asked me the other day why I am so brusied all the time, and asked me what meds I take again. He looked them all up and he was astonished that I was not told that the elmiron was a blood thiner and I really need to get off of it. I said I can't, It's one part of the puzzle that helps my flares stay down. Now I am confused about the elmiron. He told me to be very careful with bumping or brusing... because of blood clots. Thanks for letting me share. Hurten Jilly pa

[Susie2271]

My uro wants me to take 2 (100 mg.) in the morning and 2 at night also. Where the fear of side effects had me not wanting to take it, now it's the cost that makes me question why I can't try less a day. I wanted to ask him if I could take 2 or 3 a day, not four, but I'm afraid to offend him. I think I offended him during my last visit anyway. It's actually hurt my heart remembering, so I'll share. I wanted to write a quick note to him many times, but everyone I've talked to said to drop it.

My uro was telling me about Prosed DS being discontinued (it's not thank goodness I wrote the company!) and how many people use it, too. My pharmacy seemed to be one of the few that had some at the time. I had said that I guess I should be thankful I'm not alone then (because some days I do feel alone, and I meant rather that maybe that would mean there would be another medication available soon.) He said, "This disease can be very debilitating." It caught me off guard because of course I know that. Then I thought maybe I was unfeeling by saying that. My mom said that maybe it was because it was late in the day, maybe he had a hard day or maybe he thought I was down-playing my own physical problems. (I do that sometimes at the doctor's office. It's like I want to show the doctor that he doesn't have to worry or something.) I did leave a message at his office to let him know Esprit (the company that makes Prosed DS) said it's on back order, not being discontinued.)

I don't want anyone to have this disease, so I didn't mean it that way. I do feel blessed to have been diagnosed in a short amount of time (in a year's time thereabouts) and to have this great support group of others who I can learn from/with about this disease. For instance, because of so many other's support, I've been able to get through this weekend's spasms/pain (I HATE PERIODS!) with little anxiety so far, compared with some recent episodes.

SO -- thank you to all of you. :kissing: I'm praying for all of us that someday this will be a fading memory, and we'll be back to eating forbidden foods. :)

[kat]

Susie...If you have to worry about offending your dr. by telling him what's wrong, then you either have to try to be stronger, or get yourself a doctor that doesn't make you feel that you've said the wrong thing. I don't know if you've contacted anyone who helps with the cost of Elmiron, but Johnson and Johnson has given me free Elmiron for one year because I didn't have insurance and couldn't afford it. I take 2/100's in the a.m. and 2 at night also. J&J was wonderful! I helped a new IC friend I met down here by giving her that info and they did the same for her. Check it out! And if you're still afraid of your dr., maybe you could write down everything you need to tell him before you go and then just read him the list. That's helped me in the past and it also helps me not to get too emotional. Many dr.'s don't deal well with our emotions (unfortunately). Good luck!

[Susie2271]

Thanks, Kat,

You're right. I shouldn't have that anxiety about saying the wrong thing. I have enough anxiety just wondering what's next for me when I visit. :(

I've thought of checking into that (Johnson and Johnson), but then I do have health insurance and a secondary with my husband's insurance, so figured I'm not eligible. The secondary has helped cover treatments, visits, but not prescriptions, but I've never asked about whether it might pick up some of the cost as they do with certain things like my hydro w/ cysto, MRIs, stuff like that. It' worth a shot anyway. I've never asked!

Did you start out with two in am and two in pm or work up to that? My doc has me working up to that because of past bad reactions to medications. Did you notice any side effects?

[kat]

Hi Susie, Yes I worked up to my current dose but it was because I needed more for the pain, etc. I was taking it 3 times a day and I kept forgetting the mid-day one, also I was still in some pain, so my dr. said take 2 in the a.m. and 2 at night...she was also the one who told me I could take it with food when I told her it was killing my stomach! I'm really grateful to her...she's really into researching IC and has gone to seminars. Unfortunately, she's in California and I'm now here in Florida. My dr. here could use a couple of seminars, I think, but he does know quite a lot, compared to most dr.s, and really listens to what I tell him and doesn't act like a know-it-all.

I hope you can get help...maybe Walmart's $4 program? Don't really know what that's about. Hang in there...it gets better.

Please check with J&J anyway to see if they can help you even with insurance. You have to fill out a form that is fairly simple and if you call them, they are really nice and helpful. The worst they could say is "no" so give it a shot.

[Susie2271]

You're right. It can't hurt! I'll check out J&J. I think the Wal-Mart $4 one is for generic, but I'll check that, too.

I wonder how long it takes for drugs to finally have a generic brand. My hydroxyzine pamoate is wonderfully inexpensive, something like 90 something cents for 30.

Thanks for the advice!

[iceprincess]

omg, is it true they are taking prosed off the market? my dr just put me on it & i got a ton of samples from the office. it seems to calm my spasms more then the pyridium plus. if thats the case i running to the pharmacy & filling my 3 refills all at once!

[iceprincess]

and by the way....i think meds have to be on the market for 4 years before a company can have the rights to make a generic version (at least that was the rule when i took my medication administration class in 2000. it may have changed). i'll check into that one cuz i'm curious myself.

[ihurttoo]

Hey all,
I just went to urologist today. I had stopped taking the amitriphyline but kept on elmiron for 6 months and my bladder got worse. Went to see urologist and he totally dissed Elmiron...(it was kinda funny to hear a doc be negative about a drug).

He was like yeah I don't think Elmiron does anything. I told him that when I first started taking it I also started taking the amitriptyline so I couldn't really tell what was working. And he smiled and said yeah....I think thats why they (meaning the producers of Elmiron) recommend that you start patients on other meds as well. I won't say who my doc is....(but he is well known in the IC community). So, I just thought it was interesting that one of the prominent urologists in the IC community seems to have lost faith in Elmiron.
Kim
Just a thought....it could be that the IC experts may get more severe IC patients in the general scope of their practice than a uro without a special interest in IC patients. After all, most patients of reg uros who do fine on Elmiron have no reason to seek out an IC expert. However, people who have failed the standard IC meds (such as Elmiron), would be more inclined to seek out an IC expert. I mean it is generally the reg uros who d/x IC, and write the initial scripts. Very few are d/xed by IC experts because they dont seek them out until they HAVE been d/xed with IC, and have failed whatever treatment their uros have prescribed (and this generally includes Elmiron.) Thus, an IC expert's experiance would differ from an ordinary uro's in this regard. JMHO!

[ICNDonna]

The patent for a new medication lasts for something like 17 years. It will be a while before generic elmiron will be produced in the US.

Donna

[Susie2271]

Iceprincess,

I hope I didn't make you worry. My doctor thought Prosed DS was being discontinued, so I wrote the company that makes it. Even though our pharmacies here in Ohio keep running out at times, as of Oct. 29th e-mail I received, it's still here. Thank goodness! Here's what the makers wrote me:


--------------------------------------------------------------------------

From: Medical Questions [mailto:Medical.Questions@espritpharma.com]
Sent: Sunday, October 29, 2006 8:41 PM
To: susan XXXXX
Subject: RE: Prosed DS (Atropine Free)


Thank you for contacting Esprit Pharma with your question regarding Prosed DS. Prosed DS is currently on back order, it has not been discontinued. It should be available at your pharmacy within the next 2-3 weeks.


Please let me know if you have any additional questions.



Regards,

Alice Taipina, RN
Manager, Medical Communications.

[lonedog]

My previous uro had me on Elmiron for 3 months and took me off of it because it wasn't working. He didn't think much of the product as a treatment for IC. My new uro is putting me back on Elmiron and wants me to stay on it at least 6 months. He says it helps roughly 50% of patients who try it. I am interested to know what to do if it aggrevates reflux since I already have a problem with that. Any suggestions?

[Susie2271]

Hi, lonedog,
I too have reflux and have problems with headaches as well, so I eat something first, crackers or a pear, and take the medicine out of the capsule and drop it in with an ounce of water and drink it, as Dr. Parson says in this transcript:

http://www.ic-network.com/guestlectures/parsonstranscript.html

It works for me. No stomach problems and no headaches after. Here's what he said:

<drparsons> GI Problems - 90 to 95% of people won't have any problems taking Elmiron but about 5% will have problems.. mostly GI. The most common complaint I get is epigastric distress, acid indigestion. At least half will get improvement if they take the Elmiron out of the capsule and mix the contents with an ounce of water and drink it. Another trick is to take it with a small snack if though we encourage you to take it on an empty stomach. It will still be effective if you take it with a small snack.

It's a great discussion to read through actually. Hope this helps!