Side Effects of Elmiron

[wakebrat7]

Hi All:

Can anybody tell me if they experienced side effects with Elmiron. I have a prescription in hand here and am affraid to take it. I'm mostly worried about the hair loss. Has anybody experienced that. Also, it says it can cause dizzyness. Has anybody had that?

Any feedback on your experience with side effects would be appreciated.

[kelly McC]

Hi,
Just wanted to let you know everyone is different and side effects are different. I did become sick and unfortunately can not take it but others here can.I did not have anymore hair loss than normal. I wish you luck and hope you can take it.
Kelly

[Kiki42]

I have been taking Elmiron for almost 6 years and it does not bother me at all. I started taking 3 per day and now I take one in the morning when I get up and another approximately 8 pm. Every 6 months or so I stop taking them for a couple of weeks or until I feel the need. It is my way and my uro's way of seeing whether or not it is still helping me. I , apparently have a mild case ( bad enough). So, for now, anyway I have more good days than bad.

[fireflicker285]

I did have some stomach upset at first but that went away. Now I am fine on it.

I think I lose a little more hair than usual but I also think that more grows in faster to replace it. It is the same thickness as it always was.

Good Luck!

[VickiB]

I was reluctant to start my elmiron, too, mostly because of the possible hair loss. I was already noticing more hair on the shower drain than in my younger days, and didn't want to do anything to make it worse. Though I've only been taking elmiron for two months, I've not noticed any more hair loss than I was experiencing prior to starting it. Nor any other side-effects like dizziness.

On the plus side, my bladder seems to be making its presence know less and less each day. I don't know if its the meds or the IC diet,...probably a combination of both. But I do know if I had to choose between the awful pain I used to be in, or hair, I'd be out shopping for a wig!

Vicki

[fireflicker285]

Truth be told......
I would rather be bald if it meant relief from pain and urgency.

Luckily though that doesn't seem to happen.:thumbsup:

[vm]

I was nauseous the first few days and it went away. I have never had any other side effects with it. The hair loss only happens in a VERY small percentage of patients - 3-4%.

[sunnidee]

Hi

I took Elmiron for 9 months and went off it becasue I didn't find any great difference with it. I had nausea at the beginning and dissolved the caplets in water which helped. I also started to experience thinning hair. I stopped two months ago and my bladder hasn't bothered me since I had a bad attack in Feb. for a week. It works differently on everyone, so give it a try. You need to be on it at least 6 months I think to see if it works.

Good luck

sunni

[JAMIEL]

I have only been on Elmiron since February so I am not sure if it is helping me yet but I have not had any side effects from it! I think like anything, you will only know until you try it. It seems to help people so I was happy to try it to see how I did on it. You can always stop! Hope that helps!

[fireflicker285]

I was on it a couple of years back and I know it took about 8 months to really fell any difference. I know some people give up after 6 months and I think that is a shame but that is just my own opinion.

Wishing everyone good health.:D

[vm]

I know people that it has taken a full YEAR for it to really kick in.

[carolynwk]

I've been on Elmiron for a year and one-half and have never had any side effects. It has helped my bladder to some extent and I plan to stay on it for as long as needed.

[kadi]

Hi there,
If you're mostly worried about hair loss, one thing I've heard suggested is to clean out your brushes & then use them to brush your hair for a week & see how much you are losing pre-Elmiron. Then clean the brush out once a week while you're on it & see if you really are losing hair. What I heard about Elmiron hair loss is that if you're one of the really rare people who does lose hair, #1 it is thinner, but not balding. #2 it stops when you stop the Elmiron.

Good luck, Elmiron didn't work for me, but I'm jealous of those it does work for!!! Some people have had real success with that medicine!

[Sarojini]

Ok, the weird thing about my hair and Elmiron is this:

I haven't lost a strand more than usual.

HOWEVER, I have that coarse, curly kind of hair but that also gets REALLY REALLY dry and crunchy and frizzy and that is just SO easy to hate. I have it relaxed, blown out, etc. to keep myself confident enough to go out in public (generally think I look like Bozo the clown with these reddish curls ;) )

BUT, since I've been on the Elmiron these last 3 months, my hair seems softer, healthier, and more moisturized... and it lays flatter on its own.

Maybe this is my version of hair loss... but so far, I like it :)

I suppose it could be a coincidence, as I switched conditioners for the 1000th time, but...

I find it interesting all the same.

[jerry westgarde]

My side effect with elmiron was blood in the urine, after being on a course of three pills per day for three and half months. Because of the side effect I discontinued usage however I found elmiron to be beneficial, and would like to try again except for the side effects. I would like to talk with someone who experienced similar problems and were perhaps able to circumvent the problem with dosage adjustment etc.

[Mary Francis]

I had no side effects with elmiron except for hair loss. I'm 34, in constant pain, and now I am loosing my hair right in front. I haven't had any relief yet from it but I'm told it can take 6 months to work. I keep taking it though because yes, i am depressed to be loosing my hair but even more depressed because I can't function with the pain. I keep hoping to get relief from elmiron soon.

Mary

[makeyourday]

I have been on Elmiron since August 2003. I take 2 in the morning and 2 before bed. I always take it on an empty stomach. I have not had any side effects. I am doing very well. My pain was bad enough, that I would have dealt with baldness if I had to to not be in pain. Thank God I have not had side effects. I am also very careful with diet.

[fireflicker285]

So don't despair. It can take awhile.

:kiss:

[Kiki42]

:hi: Hi Fireflicker. Where in Ontario do you live? I have been taking Elmiron for about 5 years and have had no side effects. I go off it every once in a while to make sure that it is still working for me and so far so good.

I was told that I have a mild case of IC so hopefully it won't get any worse.

It is bad enough just the way it is.:(

[fireflicker285]

I live in a small town not far from Barrie Ontario. How about you?

I was told I have a moderate case. It can get very bad sometimes....I had been off the elmiron etc. to have my daughter. (now 16 months old) and was slow going back on the meds because I was too busy to bother. Then IC reminded me I can' t go with nothing.....
Luckily, I think it is kicking in again.(the meds that is) Been 5 months. Took 8 months the last time though.

Take care and hang in:hi:

[Kiki42]

Fireflicker. I am from Sault Ste. Marie. Nice to meet you.

I can't imagine how you coped with IC while you were pregnant. I am almost 62 with a mild case and I am running to the bathroom all the time with no kids to look after.

Maybe being younger helps but I doubt it.

Look after yourself and take your meds.


Carol

[Alexa]

There are only a small percentage of people who have side effects from Elmiron, as Kim mentioned. I was on Elmiron for 3 years without any side effects. Most side effects disappear after a short amount of time on Elmiron.

Take care and good luck with the Elmiron :)

Alexa

[SurferGirl]

my side effects from elmiron: severe migraine, vertigo, nausea, diarrhea, heartburn, insomnia, nosebleeds, whooshing and ringing in ears, blood in stool. (off & on)

[Kiki42]

Are you sure it is from the Elmiron? About an hour after I take it, I seem to run to the bathroom a lot. It acts like a diuretic for me. You are, I hope informing your Uro about these side affects? Surely there is something else you can take. Take care and I hope you get feeling better real soon.

[classics]

I get sounds in my ear too. At first I thought it might be an inner ear problem, but during the time I didn't take Elmiron (one month) it went away. It kind of sounds like I have my ear up against a sea shell or a roaring of far away traffic.

[Kiki42]

I have been using Elmiron for 5 years now and have never had a side affect other the running to the bathroom. I guess everyone is different. My case is not severe, bad enough though when I am in a flare.

[pebbles429]

I've also had the hair loss and it's so depressing! :mad: The Elmiron works as far as healing the lining of my bladder and helping me not have to go to the bathroom as much but I also have the interstim. I've asked my doctor if there's something else on the market that does the same thing as far as healing the liner of my bladder but they said no. Does anyone know of another drug that does the same thing? I do have a very severe case of ic but with the meds and interstim, it's under control for the most part.

[Freedom]

I'm going to try the Crystroprotek

[amy_puy]

Okay, this Elmiron is starting to scare me.
I still in the waiting game of getting diagnosed with IC. My gyn gave me the elmiron last week to try, and I haven't taken it yet, because i'm just getting over from the flu, and i didn't want to chance starting a new med when i'm not well enough etc. I also called my gyn Friday, (becasue i had some other questions) and now he doesn't want to me do the elmiron until i see him next week...go figure...
Hugs,
Amy

[amy_puy]

pottywomen: thanks for the info regarding the side effects. I'm still a little hessistant though, but i'm also glad that my gyn told me not to take it until i see him next week. That's good news for me right now. :)
Amy

[trytosmile]

I hate to say it but my experience with Elmiron is one I would rather forget. It turned me into Heckle, Jyde and Cinderella and all in a span of 60 seconds. I didn't know who I was anymore. I remained on it for 5 months and then my uro pulled the plug on it. I was on a very low dosage but just couldn't handle it. Anything lower, wouldn't have been effective enough to help the IC.

Keep in mind everyone is different and this in only my experience. I have heard to many wonderful things about Elmiron and it has helped so many people. I'm just one of the luck ones that has a very low tolerance to medications and have a hard time finding a balance between the good and the bad.

[Trishie]

I have been on Elmiron for 8 months (4 caps a day), I was sick @ my stomach for the first couple of weeks but it went away.
Don't have any side effects (knock on wood). It has helped me alot.

[Imustpee]

I have been on Elmiron 1 year July 2nd..I have had absolutely NO side effects at all..I love it!

[amy_puy]

Thanks everyone for all the info regarding the side effects.
As of right now, i'm not supposed to start it until I see my Dr next week Thursday. I hope he doesn't take me off of it, because I just filled the prescription, and it wasn't expensive, but pricy $50.00 for I think 90 pills.
Anyways, I hope everyone has an awesome day though, or at least try to.
Take Care,
Amy

[Julieee]

Hey there! I have been taking Elmiron for 6 years and haven't experienced ANY hair loss at all. In fact, my hair is so thick, I wish a little of it would fall out!!! LOL!! I do have IBS as a side effect, which really stinks. I take 400 mg per day (200 in the morning and 200 in the evening) and it completely helps me. Other than a little constipation/and or the "runs" (sorry), I think Elmiron is nothing to be afraid of.

Good luck to you! I was in your shoes 6 years ago. My advice would be to try it and see how it affects you.

[SrMaggie]

I just started back on Elmiron. I took it about 2 years ago with another uro. At that time I was trying to time the dosage - 1 hour before I ate or 2 hours after I ate. Couldn't ever get it quite right.
Now, I'm taking 2 in the am. as soon as I get up and 2 before I go to bed. I actually think it is helping. I think I lost hair the last time, but this time I am not seeing the hair loss. Even without Elmiron I was losing more hair - but it might have been the shampoo.
I can't tell if the ringing in the ears is Elmiron or any of the other stuff I'm taking. Once in awhile I feel nauseated, but for the most part I've noticed a big difference in the last few days - I've been on it for almost a month.
As for another way to coat the bladder - at my last appointment I had a heparine/lidocaine/sodium bi carb instillation. The nurse asked if I felt the difference. I didn't feel any instant relief as I wasn't really in pain at the time. He gave me a scrip to go home with and the nurse taught me how to do it myself.
I don't know which made the difference. Y
Yesterday, I had to make an 8 hour trip driving. In the last few years it has taken even longer because of the number of stops I had to make. Yesterday, I made it in 7 1/2 hours and only had 3 stops!! What a relief!
So, if you can do it, the Elmiron has helped me. The only way for you to know is to try it yourself.
This board has been so helpful to me with questions like this. I truly appreciate all the advice we can share with one another. THANKS.
Maggie

[nifer]

I have been on Elmiron for almost a year and have the lovely diarrhea side effect. I am still going to the bathroom less though which is a plus! I talked to my family doctor about it (as my uro didn't give me any alternatives) and she recommended "Florastor" which is a natural medication used for diarrhea. It is recommended for people who get diarrhea while on antibiotics or while travelling. I have been using it for the past couple of weeks and have seen some improvement.

The website is www.florastor.com (US)
or www.florastor.ca (Canada).

The benefits outweigh the side effects at the moment...

Saw a few Canadians on here! Hi! I live in Kingston, ON!

[trytosmile]

nifer ....

I went to see a Dr. Nickles at Kingston General Hospital last year about my IC. I had read an article in the newspaper about his research on prostrate and bladder illnesses. My uro was just as frustrated as I was because no treatments where working my uro set up an appointment for me to talk to him. Very interesting man. Unfortunate part is he didn't have anything more to add for my uro. That being said he has alot of positive research on the go. Hope it shows results and we will see something new to try in the future.

[nifer]

Dr. Nickel is my uro! I also read about him in Chatelaine magazine (which helped me get a diagnosis!). He is involved in lots of research ( I was part of one study). Things are good with my IC at the moment except for the side effects of Elmiron... He talks VERY fast so you have to pay attention with him but he is great otherwise.

[trytosmile]

nifer...

Small world. Yes, now that you mentioned it, he did talk fast. I remember him doing the transcript for my doctor after the appointment (he did when I was there), glad I'm not the one that had to type that out. :dizzy:

He asked me to be part of a study too but it would have required me in Kingston 3 days a week and when you live 9 hours away, wasn't possible. I really would have like to have done it. I was part of a muscular study after my car accident and I learned so much from it.

Hopefully the side effects dwindle down. Good luck ! Say "hi" to Dr. Nickles for me , lol, like he would remember, :biglaugh: Any new breakthroughs coming our way ?

[bjw712]

That is interesting because here recently I have noticed urine in my blood stream and even an occasion blood clot. I went to the M.D. to have a urinalysis but have not gotten the test results back yet. This is so new to me and has never occured before. I have been on Elmiron, Ditropan, and Ovcon for approximately three years now. Has anyone else xperienced this? If so what were you told by your M.D.?

BJ

[sunni]

The only side effect I had with Elmiron was the loss of hair after nine months, and I didn't find that it helped anymore than the Elvail I had been on for eighteen years. Elvail is all I take and seems to control things fairly well, but doesn't stop the attacks caused by stress which usually last a week.

Good luck to everyone

sunnidee

[Allylou]

[QUOTE=Sarojini]Ok, the weird thing about my hair and Elmiron is this:



HOWEVER, I have that coarse, curly kind of hair but that also gets REALLY REALLY dry and crunchy and frizzy and that is just SO easy to hate. I have it relaxed, blown out, etc. to keep myself confident enough to go out in public (generally think I look like Bozo the clown with these reddish curls ;) )

BUT, since I've been on the Elmiron these last 3 months, my hair seems softer, healthier, and more moisturized... and it lays flatter on its own.

Maybe this is my version of hair loss... but so far, I like it :)

I see my urologist tomorrow and we are going to decide our next line of attack...Elmiron sounds like something I would try...and if only I am as lucky as you...I too have thick curly coarse hair that needs three types of product to control...maybe it will be the make-over trick I need it

[Allylou]

Hi All! Dr. Nickel is my Uro as well...and he does talk fast but he knows his stuff, and he is always positive.
Just wanted to share
PS I took part in one of the studies he was fronting for amitripiline...I live in Kingston so it was convenient for me to participate.

[prissy]

Hi All:

Can anybody tell me if they experienced side effects with Elmiron. I have a prescription in hand here and am affraid to take it. I'm mostly worried about the hair loss. Has anybody experienced that. Also, it says it can cause dizzyness. Has anybody had that?

Any feedback on your experience with side effects would be appreciated.

i have taken elmiron for a year or so, it is the best my problem is i lossed a lot of hair and stopped because of the hair loss. it has been 3 weeks and i am back in pain and my hair has not returned i want to know how long do i have to wait for my hair to return. had blood test the only answer was the elmiron causing the problem. i am getting depressed about this. please someone have an answer for me

[sunni]

Prissy, sorry you are in pain again. Your hair will grow back, but it might take six months. Have you tried Elvail. That is all I have been on for the past sixteen years, and it gives me some sort of life. I still get attacks, but drink a lot of water and lie down for the pain and carry on.

Don't know if Elmiron did my bladder any good or not, but didn't want to end up bald. My doc told me years ago that Elvail could increase urine volumne as well as control pain. I take 20 mg at 5:30 at night and am pain free until late afternoon the next day if it is going to be painful at all. Maybe, you could give it a try although it isn't for everyone.

Sunnidee

[prissy]

i have been on the elvail for about 3 years. the detrol la with the elmiron and the elvail 75 mg did great for me. i have a sever case of IC and was feeling pain free. now i am lossing my hair and stopped the elmiron but i want to know how long will it be when my hair starts to grow back. i am in pain and worried sick about my hair. i do get relief at night with the elvail

[sunnidee]

Your hair will grow back but as I mentioned, may take a few months. THe hair loss will stop when Elmiron is stopped. When do you take your 75 mg of Elvail? I
Be patient - hair will return..

Here is an interesting link for everyone. THis is something I never knew before. IC is just one of many auto immune diseases, and we can have more than one at a time. I have three IC, LIchen Sclerosus, and Graves Diseases (thyroid problems) and have found my cousins in England on my Dad's side have Lupus and Rhumatoid Arthiritis - two more auto immune diseases, so these have been passed down. Not much comfort to know this, but family members can be on the lookout for inheriting some of these diseases. Link is below..

Sunni



http://www.aarda.org/survey.php

[prissy]

Sunni,
i have been tested for all of the ones you posted. nothing yet, thank God
i take the elvil at night around 10:00 somewhere in there. i will try and be patient it is hard when you work with lots of people. i finally get to where i feel great and this happens. thanks for the response so quickly.

[prissy]

i experience hair loss big time but the emiron is the best medicine. i have been off of it for 3 weeks now and i am still lossing my hair. everyone tells me to be patient that it will come back but boy i am still lossing it and very upset and depressed about it. for once i found comfort with this and now this happens. how long do i have to wait to have my hair returning.

[fje90]

I've been taking Elmiron for 2 months now- no side effects here. :)

[ddemos]

I experienced hair loss w/in 2 months...pretty quickly. I was wondering if the same side effects happen with Elmiron instills, and are the instills as effective, or perhaps more effective than takinf orally? I am assuming that the instills do not go systemically, and therefore you won't experience any side effects...

Anyone knowledgeable about this?
Thanks

[markov]

Hi Kelly, I noticed you are in the Rochester area. I live in the suburbs of Buffalo and am wondering if you know anyone with IC in this area or know of a doctor in the buffalo surburban area.

Also, do you know if this medication eleviates the inflamation/bloating of the abdomin from IC?

Marilyn

[daynuts06]

I have done Elmirion instills for about 8 mos now and haven't lost any hair.

[kissedthepixies]

Are the instills very painful? I've never done them and I'm very curious about it.

[daynuts06]

They are not painful at all. just some discomfort after the cath. I heard some drs are starting to use if for those who have no benefit from the IC Cocktail. Plus they can teach you to do them at home. My dr said that its different though then actually taking the meds but it can help with a flare.

[justice4j]

Hi,

Okay....this is really a strange one. I have been losing the middle third of my upper eyelashes for about 6 weeks. First one side, then the other. They would grow right back but I was starting to think something was very weird.

Well, now the past 2 weeks, there might be little stubs growing back, but even with my contact on, I'm not sure I can see that.

To add to the mix, I'm hypothyroid and have an endo app't. soon. Also, there's a small group -2% of alopecia aereata (patchy autoimmune hair loss) who only lose eyelashes and eyebrows. My eyebrows are actually fairly thick and long requiring trimming.....usually with hypothyroid when your labs are off you can show thinning of the outside edges of the eyebrows. I don't have that.

Glaucoma can be a cause as well. Optometry exam last fall showed no glaucoma, although my father and some maternal great aunts have had/have it.

I don't really thing this is Elmiron related, but thought I'd ask here where if there were anyone else experiencing this while on Elmiron I might get a response.....

Thoughts anyone? Yeah....I know enod then the derm. I also have a gyn app't tomorrow.....

Sheeesh....I'm tired of autoimmune stuff. IMHO IC is in that group and I actually read it on an autoimmune site requesting autoimmune patients answer a survey that focused on familial tendencies by collecting related data. Autoimmune stuff is on both sides of my family; except for me, mainly asthma and allergies.....

Please....I'm asking the universe...no more weird autoimmune crap. I'm tired of it....

Thanks for any answers and letting me vent.

[justice4j]

Forgot to mention...I've been on Elmiron for over 10 years. Started with 100 3X per day and went to 200 X2 in about 1990. Increased to 300 2X a day about 4 years ago. Now have just added 200 mg cap contents in instills 2 X per day about 1 month ago....

:loco::confused::rant:

[stacey323]

I didn't get sick and it did help my IC somewhat. However, I had an awful urologist who prescribed it and he said 'you might lose some hair here and there'. I just happened to be switching to a new gynecologist/urologist, a female, and she said 'you can lose ALL your hair!' and took me off of it because that wasn't an acceptable lifestyle for me.
My experience was I lost some hair in one place, about the size of a pencil eraser when I was taken off of it. So, if I were you, based on my experience, it would be worth a try. Just watch your head, and have someone check the back! I have a friend who has been on Elmiron for years with no hair loss and great results with IC.

[Agape]

[QUOTE=fireflicker285;43195]Truth be told......
I would rather be bald if it meant relief from pain and urgency.

Luckily though that doesn't seem to happen.:thumbsup:[/QUOTE

:help:When I was first dx with IC and in so much pain, I said the very same thing. However, after being on Elmiron for almost a year and now doing so much better, I'm considering stopping it. I am in that small percentage that has experienced significant hair loss. My hair is very thin now and doesn't grow much at all. It has caused me much stress, which is making matters worse. I don't want to go back to being in pain with my bladder, but don't want to end up bald either. I see my dr in July and hope he will have some answers, but in the meantime, I would appreciate any feedback from others.

[Aussie1]

I have not noticed a single symptom. I've been on for about 1 month.

A doctor did say you can empty the capsule into water and drink it if it upsets the stomach as the capsule packaging has some form of diary in it. I do believe it comes in drops too.

The doctor that I read this from (Dr. Lowell Parsons University of Cali) said it's ok to take a small snack with it if it upsets the stomach.

He also said that IC patients should not really ever stop taking it. I know I will not ever stop taking it.

Wendy

[aleet7]

i experience hair loss big time but the emiron is the best medicine. i have been off of it for 3 weeks now and i am still lossing my hair. everyone tells me to be patient that it will come back but boy i am still lossing it and very upset and depressed about it. for once i found comfort with this and now this happens. how long do i have to wait to have my hair returning.

Prissy,
after 1 month on Elmiron I'M LOSING MY HAIR!!!!!! I have severe IC too and was told to take 4 capsules a day and my hair is falling out fast!!!! I am freaking out! I combed my hair two nights ago and the sink was full of long hair, not little pieces but long strands! I feel like crying because I need this med for my bladder but my hair is so important to me and my husband! I can't tell my mom because she would go ballistic and tell me to stop taking it and trust God!!! I haven't been on it long enough to make a big difference with my IC! I'm not sure what to do!

Teela

[Aussie1]

I'm so sorry!! Oh this is so frustrating to you. Gosh darn it. These drugs have horrible side effects. Weight loss and hair loss. ARE YOU KIDDING ME!! *sigh* Really Really sorry.

(BIG HUG with the squeeze sounds)

Wendy

[aleet7]

Wendy,
I was praying that I was "not" in the group with hair loss but I am! I am trying so hard not to worry my family so I hide the fact that my bladder is killing me and I clean the sink out so that they won't see all the hair that is coming out! I'ts even all over my clothes!!!!I can't believe that it's only been one month and it's happening all ready! Darn!!!! I'm so sorry for ranting!

Teela:-(

[Agape]

Teela & Prissy: I know exactly how you feel. I didn't notice how much hair I was losing since I normally keep my hair cut short and it was on the thin side before I started Elmiron. However, after being on Elmiron for 10 months, my hair is noticeably thinner and I'm beginning to have a lot of trouble concealing this fact. I've even ordered a wig to see if I can wear one that will look normal to me. I have decided on my own to half my prescribed amount of Elmiron (orig. 2 capsules twice per day). I see my uro next month, but don't know if he will agree with me that it's the Elmiron causing the problem. My bladder is doing so much better and even the frequency is better, so I sure don't want to go back to how I was 10 months ago. Oh my.. I agree with your mom...we must put our trust in God!

[aleet7]

Hi Agape,
my uro told my husband that it only causes thinning on some people. In one day I noticed that the sink was covered not to mention my blouse was covered with long strands of hair! Since the first time I noticed so much hair loss I went from taking the Elmiron 2 twice per day to only one a day. I told my uro that I had diarrhea everyday since starting so he told me to start with one a day, the next day add two and so on. He told me that I absolutely have to take it everyday no if and or buts. Anyway I'm scared that the hair loss will continue if I take it as prescribed but I'm also scared to be in severe pain again as you mentioned. Last night I dreamed that I was in so much pain that I kept calling my doc and begging him for a script for pain meds! In my dream I was also calling my pcp for pain meds! It was a nightmare! This IC disease is so frustrating!( I was dreaming that because between dreams I kept waking up in pain(oh yeah and I have NO pain meds at all)! Sighing....oh well, I hope they find a cure soon!

Best Wishes,
Teela

[Agape]

Teela: You sound exactly like I feel. I treasure my pain meds like gold. In November 07, I broke my ankle and was given two prescriptions for pain meds. I still have one. My uro doesn't like for me to rely on them and would rather I have instills and definitely keep on the Elmiron no matter what. Easy for him to say. What woman wants to go through life bald if it can be helped. I know the Elmiron has kept me in remission with only an occassional flare, but I just don't know what I am going to do. It is so stressful and I know that isn't good either for hair loss.

[Aussie1]

Can you try Atarax?

It's a miracle!! I am now 5 days 100% pain free. No urgency nothing!!

Wendy

[aleet7]

Hi Agape!
It's easy for someone who is not in pain to tell us not to rely on pain meds! When we're in pain we want relief! And I don't know any women who don't mind going bald!LOL... I mean really If at all possible I'd like to keep most of my hair and treat the IC symptoms. The whole ordeal is very stressful especially realizing that you fall in the small percentage of patients suffering with hair loss. I'd prefer to have short hair only if I opt to have it cut, not fall out before my very eyes. Sorry for the rant.... I know you know exactly what I'm talking about. And I'm a little tired of worrying about my bladder every waking moment of the day. I find myself thinking," I hope I don't have a flare, I hope my bladder calms down, I hope I can eat something that won't hurt me......etc... People don't have a clue what IC patients go through (not even the docs) If they did they wouldn't make us beg and plead for something for relief!

Teela

[daynuts06]

I can remember way back when I had the same concern about the hair loss. They say either you stop in and it grows back or you stay on it and eventually your hair will stop falling out. However that is your decision. You could buy a wig or you could tell your family what is going on. however being a hypocrite ( I stopped and started the Elmirion so many times I can't count) that you need to way out the pros and cons. The pro is that it may make you feel fabulous in a while. The con is you are losing your hair. You need to write down a list of pros and cons. Not everyone can tolerate Elmirion. There are people out there that are allergic to it. Did you ask about getting elmirion instills??

[Aussie1]

The doctor on Monday said to me "take two for a while then stop them, it's the Atarax you will always be on.

(shrug)

[daynuts06]

My old uro was pushing the elmirion. He said that he wanted me at 6 a day for a while and then down to 3 times a day. I don't know about anybody else's health insurance but Elmirion is far from cheap.

[Aussie1]

It can be VERY VERY expensive!

[daynuts06]

Mine was like $75-$100

[aleet7]

I've decided to stop taking the Elmiron and then start back with 1 a day and then 2 per day. My doc suggested that I stop taking it for a couple days then start back with one per day, then two per day. I also started taking it out of the capsule because the capsul was causing me major stomach problems but when I did that that's when my hair started falling out! Elmiron is causing me a lot of problems but I was told that I have to take it to get better. I don't have another appointment until the end of July to ask about the instills.

Teela

[vm]

aleet - I do hope your doctor is willing to look at other medications because Elmiron certainly is not the only thing that will help ICers get better. It's been a saving grace for me, but there are lots of people who are not helped by it. I think if a person can stand any side effects they experience with it (I fortunately did not have any) then they should stick it out to see if they are one of the folks helped by it. Those of us who are helped seem to be helped a lot so it's worth trying to see. But if it's making you miserable there are plenty of other treatments to try.

Sometimes doctors mistakenly give the impression that Elmiron is the IC treatment and if it doesn't help you are just out of luck - but that is NOT true. A lot of people are helped by other medications and treatments. If it doesn't work for you that doesn't mean you are doomed to live in discomfort.

[aleet7]

My doc did give me the impression that Elmiron is the ONLY thing that would make me better. Although he did mention that if I start flaring really bad again that we would do another hydro. But he has not mentioned any other meds that could help me. That is why I am so thankful for you and all the other ladies on this board.

[Claredale]

Aleet, Elmiron is certainly not the only treatment for IC. Some of the best advice I have read on here that is given to people dealing with doctors that don't have a lot of knowlege on IC is to print off some of the resource information on this site and take it to your doctor. I think I read that 40% of patients that are put on Elmiron actually have good results. Everyone is always happy for the ones that it works for. I have read some great success stories on here.

You probably realize by now that none of us can follow the same treatment and get the same results. Like Hydros for me don't work, nor do instills. They actually make me worse, but of course I went through it for diagnostic reasons on the hydro and the DMSO treatments (very "old school") because that is what my doctor knew to do. When my symptoms became worse, he did another hydro to see what was going and it that is when he discovered that my IC had progressed to severe (which isn't common), so he referred me to another doctor that specialized in IC and we tried several treatment and combos of meds to get me to feeling as normal as possible.

Many people will tell you that you are your best advocate when dealing with doctors. Especially since so many of them are set in their ways regarding their handling of a complicated disease.

Hugs, Tracey

[justice4j]

I thought that I was losing my upper lid eyelashes possibly b/c of long term. over 10 years, Elmiron therapy. Not.....my Ferritin (iron) levels were 5 and the lowest on the normal scale is 10. My Hemoglobin and Hematocrit were also low, but just below normal.

IBS had flared badly for over a year - it's finally started improve since May 3rd. which I believe is b/c of LDN. The IBS improvement has improved the absorption of nutrients from food and that has helped move my H & H toward normal. Now, I just have to get the Ferritin levels up. That takes months of iron therapy.

So, perhaps anyone who has IC and IBS, is on Elmiron and whose IBS is not well managed might want to ask their Dr. for a CBC - complete blood count.
If anemia is present, it can be a cause of hair loss. Hypothyroidism can cause hair loss as well. Same thing for hormonal imbalance and menopause.

Just wanted to add that in case someone reading was experiencing hair loss in case Elmiron was not the culprit.

[aleet7]

Janet,
that's a good point to have all those things checked. I recently had a full physical including having my thyroid checked and to see if I was anemic and everything was normal. I've only been on Elmiron for a month and I'm seeing hair all over my sink and my clothing. I called my doc today because I'm seeing blood in my urine! He is out of town!
Why are they out of town when you need them most! The nurse tells me to go to urgent care so when I get there they tell me that the wait is going to be at least 2 hours! I absolutely could not sit on my bladder for 2 hours so I left. I'm hurting so bad but I guess I'll go first thing in the morning!

Teela

[txflea]

I have been real lucky about any side effects, I do have some achy knees and just my left elbow but I figure thats from the weight I carry around and the fact that I sleep on my left side with my elbow bent. lol
As for the hair loss, I started taking Biotin. I get it from my health food store, and its 5mg... if you get it from like Walmart or somewhere like that it usually comes in 2500 mcg. So the 5mg's is much more than the other.
I have noticed that my hair seems to be thickening some, but I am also fighting a losing battle. I have hypothyroidism too and until you get your level exactly right (which is impossible since it seems to change every 6 months for the last 20 years) it has hair loss also. So my hair is pretty thin, but I agree, I would rather go wig shopping than have the problems of the spastic bladder!!

[AlaskaGirl]

Hi All:

Can anybody tell me if they experienced side effects with Elmiron. I have a prescription in hand here and am affraid to take it. I'm mostly worried about the hair loss. Has anybody experienced that. Also, it says it can cause dizzyness. Has anybody had that?

Any feedback on your experience with side effects would be appreciated.

Hi i was just recently diagnosed with IC/PBS they prescribed me Elmiron two month before i was diagnosed my urine samples kept coming back with no bacteria in them so they also prescribed me a anti spasmatic medication for my bladder and it got to the point where i couldnt urinate but the elmiron has helped when i first started it the first month i was having mood swings didnt know why i was so angry but that passed ive been on it for 4+ months now and im was doing ok until headaches started they got so bad that i would end up puking from it being so bad so they brought me down to one a day for a month and the headaches werent so bad now im back on 2 a day and they r back but not to were im vomiting yet! they have streached my bladder back to its original size and the elmiron isnt doing the same for me then it did before they stretched my bladder!

[Agape]

When I first started taking Elmiron, the worse was the nausea. I was told to remove the capsule and take it that way. After awhile, my body adjusted and I was able to take it capsule and all. The only other side effects I've experienced are weight gain (I put on at least 5lbs.), but that could also be caused by Zoloft which I take every day. I now have thin hair and am not sure if it was the Elmiron or age or hormone problem. It is some better now, but did not grow back...just stopped falling out!

[Sharyn]

I can't tolerate the stomach side effects, so have asked the Uro if he will give me instills. I had a instill on Thursday and have a bad flare ever since. Do others have a problem with Elmiron instills? I was in remission for about 3 yrs getting Heparin instills, but they stopped working.

[mommyof5]

I read that glucosamine msm works like elmiron so I tried that and got good result after 4 mos. No side effects. Good luck with whatever you try.

[tessgill]

Have just been on Elmiron for about a week. Have felt a little nausea and have a slight headache. Am hoping it goes away with use. Also, doctor said I could open capsules and mix with water because it is the geletan pill capsule that causes diarrhea and nausea, but when i did that my throat felt funny all day. Has anyone else done this regularly and does it work OK for you?

[aleet7]

Hi Tess, I was nauseated with diarrhea in the beginning of taking Elmiron. I was told to take it out of the capsule and add to water and that helped me. When you drink it in water trying washing it down with something afterwards or eating a cracker to get residue from your throat. You should feel better as you continue to use it.

Best wishes,
Aleet7

[QueenMellyBee]

Honey....child....Lemmmme tell ya :tsk:

I know that the OP posted this years ago - but I feel like it's a PSA that needs to be said in my case.
I am 28, and over the course of only 10 months I lost 40% of my hair density taking Elmiron. Elmiron also made my hair brittle, causing it to break off as well as fall out.

They say that this is a slight possible side effect. I say....Google it and see how many pages on different websites women report this ONE SAME side effect! The FDA clearly isn't listening. I wish I has researched and been wiser.

I now have the difficult task of repairing the hair left on my head, and growing new hair back. It is NOT easy. We IC'ers have enough stress and depression..... feeling "not pretty" is an insult to injury that I will not put up with.:mad:

[sshannon74074]

they advertise only a small percentage of people will have hair loss but from reading this forum it seems like about 50 percent