Elmiron Revisited

[donnadb40]

I know that there are TONS of posts here on Elmiron and it's side effects but i would just like to see a "POLL" all in one place of (1) How many of us who take it (2) is it working for you and (3) your personal side effects.. I am so "on the fence" about this drug but I'm beginning to think that a LITTLE hair loss might be worth it IF it works.. I'm at the end of my rope:cussing:

[karen10]

Instead of taking a drug that might result in hair loss or other side effects that worried me, I decided to go with a product (CystoProtek) that has no reported side effects. According to one doctor I spoke with, it has the same effect as Elmiron in coating and repairing the bladder over time. So far I'm doing well. :woohoo: Elmiron does appear to be first line treatment for many doctors. I was thankful my doctor gave me several choices which included CystoProtek!

[donnadb40]

Karen, I tried the cytoprotek repeatedly and it kills my stomach! I did the freezing thing as well as taking it with a FULL meal but just can't do it.. I'm so glad that it works for you!!

[leelee88]

Even though I am having hair loss the Elmiron has helped my pain so much.. I am just going to deal with the hair loss and keep taking it.. I cannot go back to that pain..

[donnadb40]

Rhonda, sorry that you are experiencing the hair loss!!! Hopefully, you won't mind if I ask you this question! Is your hair falling out in clumps or just a few strands here and there??? I keep thinking that I am going to go to sleep and wake up bald!!!!:help: Hopefully, your hairloss will stop because I know that you are happy to be pain free!!!!!

Hugs,
Donna

[leelee88]

I Know my hair is coming out because when I shower or bathe and wash my hair the drain has lots of hair in it, and my brush is full after 2 days..I can make a good hair ball the 3rd day..:(

[Zygala87]

I believe that Elmiron is helping greatly. I had some hair loss so I cut it short, stopped haveing it colored and wore a nice wig for awhile. It is growing back in and no bald spots. I am gray and don't care. I stick to the IC diet. and use Prelief just in case I make a mistake while eatting out. One year and I have gone from a 10 in pain and frequency down to a two. Yet we always live under the cloud that a bad flare can happen and I fear that it will hit me and stay there. My Doctor said he would do another HYDRO if that happens. I hope you find something that will work for you. Elmiron has never made me sick. We are all so different. All my best. I care. Hug, Ziggy

[muxerr012]

I personally won't take this drug and my GYN agrees with me. My doc's main beef with Elmiron is that they are the only FDA appvd drug right now and because of this they are over-priced and have little competition, they also don't even know why or HOW it works or helps, and as well all know the side effects can be substantial. I have read other products to take on this website such as marshmallow root, Desert Aloe Harvest, CystProtek which can be removed from the capsule and put in a drink . The mfg suggests the products in the capsule itself may be causing the irritation for some people. Hope this might help you decide. Good luck to you in your quest.

[donnadb40]

Are you referring to opening the cystoprotek capsules? The rep told me to try freezing them but never told me to try opening them. I would like to try this if this is what you meant... I have heard of opening the Elmiron. Could you please clear this up for me. Thanks!

[GriffsMommy]

I was on Elmiron for about 11 months. I didn't see any side effects during this time period but I didn't see any improvement either. When I was inbetween drs I stopped it on my own to see if I would get worse when I stopped. I didn't, symptoms stayed the same and I haven't taken it since. My new dr really wanted me to start it because he said my bladder was so inflammed there was no way to tell if it was working or not. He thought if he could get my bladder calmed down some I might see some improvement from it. I told him I just can't afford it though. I am on tons of meds now that are generics but when you're on so many the copay still adds up to alot, including the copays for the instill meds. I have to get a 3 month supply and it's $120 for a 3 month supply. He told me we'll try the other stuff for now and talk about it later. Unless I have a sudden windfall I don't see how I would ever restart it when I saw no difference and I can't afford it.

[Babs RN]

I didn't personally have any side effects from Elmiron, I just didn't have any improvement after 18 months on it so my uro at the time decided to discontinue it. I am on Coumadin as well, so it was somewhat of a risk to be on both and the overall risks didn't outweigh the benefits. Sometimes our bodies respond differently at different times in our lives so it might be worth discussing trying it again with your doc.

Hugs,
Barb:hi:

[Golden Girl]

Well, Elmiron is about the only drug I've been on that I haven't had noticeable side effects from! The OTC pryidium made me queasy, Sanctura caused dizziness, Urelle increased my difficulty in voiding, Detrol caused major fatigue and on and on! Supposedly, the Desert Harvest Aloe Vera doesn't have side effects, but it I had major upper gastrointestinal refux with it. I think the Elmiron has helped me, unless its just tincture of time with my IC symptoms gradually getting better.I have been on Elmiron for 10 months now. My hair has always been very thick, so its hard to tell if its just age and hormones catching up with me as it is thinner than it used to be. (I am 53)

[Annie2]

I was on Elmiron for 4 1/2 years and it helped me tremendously!!! I didn't have hair loss with it, but made the decision I didn't care if I did have that problem as I'd rather wear a wig and and be able to live my life than suffer with a full head of hair. It took several months before I received the full benefits of it. I started feeling a little bit better at 3 months, but didn't see the full benefits until 9 mos. I was able to quit many of the other meds I had been taking once the Elmiron fully kicked in and I was doing great on it. It really worked for me!

Unfortunately, I developed another chronic illness and Elmiron exacerbated that problem so I had to discontinue it 4 months ago. I'm doing ok with carefully following the diet again, Elavil and physical therapy. Oh how I miss my Elmiron and can hardly wait until my other problems are better and I can start taking it again!

[runningemiles]

I have had NO side effects from the Elmiron. I was told though that taking a higher dose (200 mg) in the morning and then at bedtime was the most effective. I learned this after 6 months of taking it and could tell a BIG differnce once I switch when and how much I was taking it. It you take it throughout the day the food absorbs and you don't get the effects. However, taking it like this reduced my pain and allowed me to eat more foods than normal. Good luck!

[muxerr012]

Yes a lady on this site posted that she had called the manufacturer and was told that some people are sensitive to the substance used to make the actual capsule. They told her she could open the capsule and drink it. I'll try to find that post for you k?

[muxerr012]

Donna some people open the capsule and put it on bread. I haven't had the courage to try it yet tho....Plsss let me know if it works for you ok? I'm on antibiotics again for another infection due to some ongoing dental work right now and I'm afraid to add the CystoProtek right now until I get over all this dental stuff. Thanks!!

[Ann228]

I have been on Elmiron for about 4 years. My dose is 200mg twice a day. I got some relief by 6 months and much more at one year of taking this med. I know it has helped as I stopped taking it for about a month and symptoms got much worse. A couple of months after restarting elmiron, my symptoms were much better again.
It is supposed to be taken on an empty stomach but I got slightly nauseated for several hours after taking my dose when doing this. The nurse practitioner at my doctor told me a few crackers with the elmiron wouldn't hurt. Doing this didn't affect my results and got rid of the nausea.
Like any other medication elmiron affects people differently. You just have to try a treatment to see how it affects you as an individual.

[lisabar36]

I haven't had any side effects, its possible in may have caused some alopecia, but I am still taking it, I have large parts on the back of my head and in one area the part got bigger, and it looks like a bald spot but since I noticed it, I has not gotten bigger and is growing in. I have only been on it since September, so I will just have to see what happens. I do know it helps me! :)

[massagedoula]

As you can see from my signature, I have been on Elmiron since 9/06. I thought long and hard about starting it and I was scared due to some of the posts I had read, as well as my reluctance to use prescription medication. I tried almost all the alternatives first, marshmallow, cystoprotek, glucosamine, msm, desert harvest aloe (and many more). After 9 months suffering from what I thought was a life that I couldn't lead much longer, I started Elmiron. I was so scared at first, I thought that every hair that fell out was the start of hair loss! After 3 months on Elmiron I remember driving to school thinking "I am still in pain, but I could live my life at this level." It was a real turning point. After 6 months my husband could notice the difference in me, and after 9 months, I knew that it was working. I still had basically no side effects, no noticeable hair loss, no GI upset. I decided at some point that I would try to prevent possible side effects before they happened, so for the last 1.5 years, I have been opening up each Elmiron capsule before I take it and pouring it into a plain 00 size gelcap and taking it that way.

At this point, I am happy with the results I have gotten from the drug. I am one of the most "holistic" people I know, and would NEVER had thought that I would be taking a prescription drug for 1.5 years...but I really needed to also have a normal or relatively normal quality of life. I have had HUGE stress in the past few years, I am 6 months away from graduation from midwifery school. I lose sleep, staying up all night at births, I have enormous exams to study for, I have emergencies to deal with, I have endless prenatal and postpartum visits some days...And I can't afford to be thinking about my bladder the whole time.

I am not in "remission" as I still have frequency and urgency, but nothing like pre-Elmiron days. I can hold my urine for an hour or two, or more. (I used to pee 4-5 times per hour...and still do when I am flaring) recently I went to the movies and for the first time I can remember, I sat through the whole movie without getting up to pee. That is how I know that even after this whole time, Elmiron is still working and I am improving. I still get flares if I don't follow my personal version of the IC diet, but they are relatively short lived, amybe 12-24 hours. Before Elmiron I was in such discomfort that I was unable to tell when a flare stopped or started.

So that's my story. I still don't feel 100% comfortable taking a drug forever, and for that reason, I dropped down to 2 caps a day from the recommended dose of 3. I tried one a day, but found that my symptoms would slightly increase with that low of a dose.

I plan to go off of Elmiron this summer, as we will be trying for a baby. I am really scared of what it will feel like to stop this drug that has helped me so much, but I am committed to not exposing a fetus to any drugs that aren't vital, even if it is a cat. B drug. I plan to go back on Elmiron if I need to do so after the baby is born, but I am hoping for an easy time during pregnancy, and maybe I will be able to stay off of it through breastfeeding as well.

Anyway, the point I wished to make is, there is no harm in trying it. Even if it does not work for you, or you do get side effects, you can then go off of it. I was so scared from some people's posts to even consider it when I first got IC, and I feel that I wasted 9 months of my life in such discomfort and pain being scared to take it, and I wish I had tried it sooner, since it did work so well for me.

[massagedoula]

Here is a close-up photo of me where you can see my hair quality very well. I get many compliments on my hair, and I have been taking Elmiron for 1.5 years. I just thought this might reassure someone who was worried that everyone would lose hair on this medication. (PS..This is not my baby! I am a postpartum visit after a birth I attended. And yes, this baby was quite big...10#1!)

http://i134.photobucket.com/albums/q109/nukuspot/Emily_with_baby.jpg

[mary124]

I have been on Elmiron since 1997/1998 started out on the lowest dosage possible; now I'm taking 2 caps @3 times a day. ( Even though Elmiron is to a degree a bloodthinning med and I am on Coumadin, both the Uro and Cardio seems to be in agreement that it is ok to be on both. Even the Pharmacists says as long as my dosage of both medications stays the same or pretty much the same. ) Getting back to the side effects though, I really don't have any-- I have a bald spot on my right side of my head but I think its more heredity than anything as my Mom and Sister has the same thing. So as long as its helping and my hair isn't falling out and I'm not having any other problems then I will keep taking it.

[massagedoula]

Sorry, I have been on Elmiron since 9/05--not 9/06. That makes it 2.5 years I have been taking it! How the time flies...

[Shalai]

Hi
I've been taking Elmiron since Nov '03. I started out with 100mg x3/day, now I'm down to 100mg x1/day. I take it before I go to bed. My hair did fall out when I first started on it (not bad, tho), and after a year or so, the hair loss subsided.

Happy New Year!

Sherry

[karen10]

massagedoula -- thanks so much for sharing your Elmiron success story! I too have become (wasn't always) a big holistic person based on past experiences I've had with prescription meds, lack of results with them, and good results going the holistic route. My fear of taking meds has almost developed into a phobia! But, this gives me some reassurance that should I have to take Elmiron, I will probably survive! :pray: Okay, well it's not that bad really, but my fear makes it feel that way. Anyway, I just appreciate these message boards so much and having people share their experiences. :)

[donnadb40]

Thanks for all of your stories! I'm still on the fence but leaning more toward trying it! Massagedoula, where do you get the 00 capsules to put the elimiron in?? If I do decide to go with it, that is a great idea!!

[Charisse]

I am on Elmiron (200 mg per day equal to 1 caplet at breakfast and 1 at dinner). I noticed a dramatic improvement after 1 month on the drug. I had no hope for it because I was in so much pain and I usually have horrible side effects to drugs. I do take it with food to avoid stomach upset and guess what? It still works for me. I tried emptying the capsule out into water and that didn't help the horrible cramping and diarrhea so now I just take it with food and it's been fine. I notice a difference if I miss 1 or 2 doses. I am so glad it's working for me. I have thin hair anyway so I'm probably being paranoid but sometimes I think it's getting thinner. However I don't notice I'm losing anymore of it in my brush or in the shower drain. I am on a very low dose though.

[massagedoula]

Hi again,

I just get the empty gelcaps at my local health food store. They come in many sizes, but I find that the 00 size is the easiest to recap the Elmiron into. It is bigger than the capsule the Elmiron comes in, so I just (slowly) pull the two parts of the Elmiron capsule apart, and then pour the powder into the larger 00 gelcap. It takes a bit of getting used to to not spill any, but after 2 years of doing it, I can even do it in my car at stoplights if I have to!

The brand of gelcap I use is Frontier, but it is just plain gelatin, so it really shouldn't matter the brand. I buy them in bulk bags of 1000. I decided to do that because I didn't like the idea of pouring the Elmiron into water, because I saw that some would always inevitable stick to the glass, and I didn't want to waste it at 4 dollars a pill! Some people report mixing it in applesauce. I didn't choose to do that, since I have always stuck to the (annoying) 1 hour before or 2 after meals rule. Since it is so poorly bioavailable, I wanted to make sure that I was getting as much as I could in my bladder, since my liver had to metabolize it anyway...No point in wasting any that might stick to food.

[formom]

I have been on Elmiron for almost 6 weeks now and have occasional upset stomach but not everyday, and I am 6 months postpartum so the hair thinning could be a result of that. I also take other supplements as well. Did anyone take other supplements as well with the Elmiron and then discontinue? I would love to just take that and nothing else but feel the supplements are helping with it. Who knows!!! I have to say I have been able to sneak in some more foods and no pain!! I pray it continues to agree with me because there alot more people who benefit from it than not that I hear anyway. Thanks :pray:

[Charisse]

I have never taken anything else for my bladder so I know it's the Elmiron that's working. Did you have IC before your pregnancy? If so, how was it during pregnancy?

[donnadb40]

Charisse, I didn't have IC before pregnancy. I started showing symptoms when my son was 14 so I can't help you here... Sorry!

[Charisse]

Sorry Donna I meant to address ForMom but I didn't know her real name. SHe said she was 6 months postpartum so that's why I asked!

[formom]

I too did not have IC before pregnancy or any other bladder problems. I just had my third child in June 07, and I am not sure if that brought on the IC or what but that is when I was diagnosed. My son weighed 9lbs and was my biggest and i pushed continuously for 45 minutes. OUCH!!! I also have high blood pressure now too, so I guess the third time is REALLY a charm! HA!:rolleyes: But I thank God everyday for my little guy!!

Forgot to add that I do read alot that women go through remission sometimes when they are pregnant, I will have to find where I read that and I will let you know. So if you are trying, do not be scared, it may be better. I know I have 5 herniated disc in my thoracic spine and was in horrible pain before I got pregnant,(as a matter of fact I was on steroids when I conceived) OOPS!, and then all of a sudden my pain went away. I thought I was going to be worse because of the weight gain. So you never know how your body will react. And I have a beautiful healthy baby.
Thanks, Renee'

[runningemiles]

Thanks for the encouragment for those of us who are thinking about getting pregnant. I have been consulating w/ my Gyno about this and she is very comfortable with me taking Elmiron while I am pregnant and has had several patients take it and their babies are fine. However, with my first I was VERY scared to take anything so I am unsure what to do.

[Charisse]

My GYN said it's completely okay to stay on the Elmiron too. In fact out of all my medications he said he would be really concerned about having me stop that one despite it hasn't been around for that long. I am glad to hear another GYN who has had several patients on it! It's Category B which makes me feel better about it.

[Paula A]

I have taken Elmiron since March of 2005. I am feeling so much better and I would be afraid to go off of it. At first I got nausea. I would kind of dry heave but after about a month that went away and I haven't gotten it since. I know no one has never mentioned this but after I take Elmiron I tend to feel really hungry. I get the feeling like my stomach is going to growl but it doesn't and I feel this way a few minutes after I take it. I started taking Elmiron before I go to bed, one in the am hour.( I have to get up to go to the bathroom anyway) and one when I get up in the morning. It's also easier because I don't have to worry about taking any during the day. I am not 100% better but I do feel a lot better since I have taken the Elmiron.

[massagedoula]

Paula,
I also feel hungry about an hour after taking the Elmiron too! I understand that feeling.

[Paula A]

Paula,
I also feel hungry about an hour after taking the Elmiron too! I understand that feeling.

Thanks for responding. I am glad to know that I am not the only one:)

[CherylSLP]

I take it. 100 mg one time a day. Used to two times.

No side effects unless I miss a day or two and then when I take it I get a mild headache or stomache ache for about a day.

Works very well for me. When I miss it I do notice.

[Cadyfatcat]

I took elmiron from march/07 until the end of november/07. I had huge improvements during that time but was never really sure where the improvements came from: elmiron, hydroxyzine, nortriptyline, or gabapentin. My pelvic floor dysfunction was so much better at the end of november and I could enjoy a lot of foods that would once trigger me. I stopped the elmiron in november and currently my bladder is much worse.

However, other symptoms, like stomach aches and constipation, which I just chalked up to IBS, have dramatically improved since I have been off the medication. I think the elmiron may have been wreaking havoc on my stomach, in fact at their worst, my visceral symptoms may have been or at least mimicked ulcers. Right now I am debating whether or not to go back on it and trying a few alternative medications out that I have always been curious about while I am on hiatush.

[my3boysmcr]

I've been taking Elmiron since the end of October. I initially had stomach upset with it but that eased up over time. My urogyn had me taking it 100mg 3xs a day but my new doctor upped it to 400mg/day taken as 200mg in the am and at bedtime. I have seen a little bit of improvement. That said, I am also taking hydroxizine and neurontin and going to PT and having rescue intills. I think the whole "program" is helping me overall. No hair loss for me as far as I can tell. I have always lost hair (I am hypothyroid) and I don't see any more hair than usual. I have a very thick head of hair anyway so it wouldn't matter.

[muxerr012]

So much controversy over Elmiron....How many of you out there think CystoProtek is just as good or better than Elmiron and no side effect of losing your hair???? Plus it's cheaper for me too. My3boys: as far as hair loss...that side effect can take 6-9 months to occur. I also have read that many ICers had thick hair too but when your hair comes out it is in chunks and patches, so it wouldn't matter even if you have thick hair (I do too).

I tried my CystoProtek only once and it gave me sharp tummy pains. I am now taking Lyrica for pain so I think I will try taking the CystoProtek again, lower the dose, and see if that helps me. So many Ic'ers swear by it....it's worth a shot and it sounds so much better to me than Elmiron. Just my opinion tho, but my doctor agrees with me and doesn't like Elmiron AT ALL.

[my3boysmcr]

So much controversy over Elmiron....How many of you out there think CystoProtek is just as good or better than Elmiron and no side effect of losing your hair???? Plus it's cheaper for me too. My3boys: as far as hair loss...that side effect can take 6-9 months to occur. I also have read that many ICers had thick hair too but when your hair comes out in is in chunks and patches, so it would matter even if you have thick hair (I do too).

I tried my CystoProtek only once and it gave me sharp tummy pains. I am now taking Lyrica for pain so I think I will try taking the CystoProtek again, lower the dose, and see if that helps me. So many Ic'ers swear by it....it's worth a shot and it sounds so much better to me than Elmiron. Just my opinion tho, but my doctor agrees with me and doesn't like Elmiron AT ALL.

I understand how the hair loss thing works. I am willing to take a chance and wait to see what comes. I have seen some slight improvement since starting. Nothing major. I was told to give it 6 months and see. If it isn't doing anything, we will see what other options there are.

[Pernie]

All I can say is that Elmiron gave me my life back. I went from waking up 5 to 8 times a night to waking up once or twice. From being in constant and continual pain and discomfort to rarely feeling any pain or discomfort. From feeling like I had to pee all the time back to normal. I was also having constant and chronic yeast infections which stopped when the Elmiron started working. And sex is pain free and fun again. It has worked incredibly and amazingly well for me. I can even eat a lot of no no foods as long as I don't over do them.

Once I forgot to refill the prescription on time and the drug store was out of it and had to order it. I went 5 days with out taking it and around the 4th day all the misery started to return. I thank g-d for it every day.

As for side effects my hair thinned just a little but that is the only side effect I've had. All my hair could fall out and I would happy to deal with it rather than be in the constant pain and misery I was in prior to taking the Elmiron.

Like I said before it gave me my life back.

[muxerr012]

Pernie and Mr3boysmcr,

I'm so glad the Elmiron is helping you both and giving you such great relief!! I'm sorry if I sounded so harsh and critical of the Elmiron, please forgive me. I get way too opinionated and I also forget how different each of our bodies and our IC is too.

Your success with this medication is an inspiration to SO many Icers who are suffering and I thank you so much for sharing.

Again please accept my humblest apologies for sounding so darn critical, that was a poor choice of attitude on my part, and I want you to know I am thinking of you both. I wish you continued improvement and pain free days and long pleasant nights of uninterrupted sleep. :pray:

[my3boysmcr]

Pernie and Mr3boysmcr,

I'm so glad the Elmiron is helping you both and giving you such great relief!! I'm sorry if I sounded so harsh and critical of the Elmiron, please forgive me. I get way too opinionated and I also forget how different each of our bodies and our IC is too.

Your success with this medication is an inspiration to SO many Icers who are suffering and I thank you so much for sharing.

Again please accept my humblest apologies for sounding so darn critical, that was a poor choice of attitude on my part, and I want you to know I am thinking of you both. I wish you continued improvement and pain free days and long pleasant nights of uninterrupted sleep. :pray:

Thanks. I didn't necessarily take offense but rather just restating that I am not walking around with blinders on. I know that not everyone responds to the same treatments in the same ways. We are all individuals. I took your reply in stride and do keep that info in my head for when and it I do need it. We can never get enough info on treatment options for this disease. I wish you improvement and pain free days as well. I'm still working on uninterrupted sleep..........

[notmybestday]

I tried Elmiron back in the fall but stopped due to stomach problems. I had cramps and diarrhea unparalleled in my IBS history. Awful, awful, awful. I tried taking it out of the capsule for a few days, but I still had the same symptoms. The day I stopped taking it, the stomach aggravation subsided. I am wary of the lack of research concerning its long-term effects anyway, not to boohoo those who have had success with it. That's amazing, actually.

S.

[windchaser]

i take elmiron and i do also have hair loss but some was coming out before the eliron just has gotten worse still not bad enough for me to stop the elmiron I have just recently run out of my elmiron and noticed that the pain has gotten worse since i stoped taking it, i am waiting for help from a drug company which should be in about a week ... hope i can make it lol and about the hair loss my hair is very long almost to the my hips now and when i brush my hair i get a good sized hair ball each time , but to me it is worth it kind of lol still get a little depressed about it sometimes but i think it could be worse i could have no hair at all... :) :)

[CarolineJulia]

Hi Guys!

Have to keep this quick as I'm currently cleaning out my basement suite! I have been on elmiron for just over a year now. I am happy to say that I'm almost symptom free most of the time... or... the symptoms I do have don't bother me that much. I first noticed a difference at around three months... I felt slightly better on certain days, but it was nothing dramatic. At around six months, I was feeling quite a bit better, but would have still struggled had I felt the way I did then ALL the time. At nine months, I was doing great! Sleeping through the night, less pain with urination, able to eat some more "naughty foods". Today, I do ok! I eat non-ic foods in moderation and still dilute a lot of no no liquids with water. I take pyridium if I ever drink alcochol or feel flarey! For the most part, I live a normal life other than taking medication. My sex-life is basically back to normal and I don't urinate any more than my friends without i.c. do. I am pain free in terms of that headachey bladder pain. I don't use my hot water bottle to sleep anymore, although I still find a pillow between my legs helps that "gotta go" feeling. Lastly, I do find that my symptoms get a bit worse when I PMS. But besides all that I am happy and loving life again.

Elmiron isn't for everybody... and ideally, I would like to get off of it one day. But in the meantime, this drug has given me happiness and normalcy back. Two things I missed tremendously this time last year. I also take hydroxizine and elavil at night.

Anyways, that's just my two cents. Everybody is entitled to their own opinion and should do their own research before putting anything in their body. But if my story helps others feel hopeful or better... and if elmiron makes them feel better, than I think that's great!

Love and light,

Caroline

[karen10]

So great to hear that people are doing well, whatever they are taking!! :)

My question is, how do you know it's the Elmiron when you're taking the other meds too? The hydroxine helps with inhibiting the mast cells and thus with inflammation which causes much or most of the pain and discomfort. Then Elavil (in studies) has actually been the best for pain management for milder cases of IC than anything else!

Just curious. I'm not taking Elmiron (yet) hoping other things will work. Being sensitive to just about everything I take, I'm nervous about trying it. I'm doing ok with the hydroxine and I take the aloe and CystoProtek, and I'm hoping that will work.

I'm really looking forward to having things a little more back to normal someday though!

Thanks for sharing. It sure is encouraging!

[ngazerro]

I took Elmiron for a year. Just recently went off it and I really started to have bladder pain more. Instead of going back on it my uro has been putting it in my bladder with my recuse instill. I had one yesterday and I have not had any pain yet...:woohoo: We are going to do this once a week and see what happens...

[green_the_fish]

Here's my personal experience...

(1) I am not currently taking it, as I am feeling well these days, but I used to take it. I was on it for over a year.

(2) Yes, I believe it did help me to feel better. My improvement directly followed a long regimen of Elmiron, Urocit-k, and Hydroxyzine, and Ortho Tri-Cyclen.

(3) This is an interesting one. I know that the obvious side effect I experienced was gastrointestinal discomfort for the first week or so. This gradually went away but, when I would stop Elmiron and then start it again, it would "restart" and give me discomfort for the first week again.

Now, as for the infamous hair loss side effect...

I used to say that Elmiron didn't cause hair loss for me, because I didn't notice a change in my appearance. My hair looked as thick as ever. Interestingly enough, though, when I started weaning off Elmiron, I started to notice that less hair would come out in the shower or in my hairbrush. I was never alarmed or even suspicious at the hair that came out before; I assumed it was only because I dyed my hair frequently. Again, I didn't notice any change on my head, but my hair is so naturally thick that I think it would take an abnormal amount of hair loss for it to be noticeable.

So, I guess all I can say on that one is that, if I experienced hair loss, it was not significant enough to be noticeable to others, or to myself.

That's just me, though. I hope that this helps :)

[formom]

I have been taking Elmiron for exactly 3months now and it has been good so far. I hope it will get even better as I still get flares around my ovulation. Does anyone get it around ovulation or menstruation? I used to get flares around menstruation but lately I notice more around my ovulation. My doctor said that was unusual. Who knows!:loco: He said to keep track of it and he will see me in 3 to 6 months. I was just curious if anyone else gets that. But beside all that, the Elmiron I believe is helping compared to where I was 3 months ago.

[karen10]

Yes, I've been noticing that I have more problems around ovulation too! In fact I can never tell when my cycle is starting each month as I have no pain at all, not even cramping. For me, it's directly related to my sugar and white flour intake. When I stay away from both, I don't have any flaring during my cycle or prior to. Strangely though for the past few months, when I ovulate, I also seem to develop vaginal yeast problems! To clear that up I just use the yogurt treatment (use plain yogurt like monistat) and it clears up within a couple days. I have always suspected yeast is involved with IC, and in my case, it seems to be true.

[formom]

Thanks Karen. I will try that. I will also try to eliminate sugar around my cycle and see what happens.