Does Elmiron help mild or severe ic?

[Marlana]

Hi
I have heard differing stories. I was just wondering if elmiron was more effective on mild IC than severe cases. I have looked it up on various sites but cant get a stright answer. I know chances are slim to nothing it will work, but I heard if used with elavil in combo therapy, the odds increase a bit. Thanks

[vm]

I don't think the chances are slim to nothing. :) I think it can help in mild and severe cases - most often I hear it helping more with milder cases, but that's just what I have heard --- I don't know if that's true in general.

The numbers you usually hear quoted are that it helps 30-40% of those who try it. Then you have to figure in how many of those that it didn't help ---- stopped taking it before a year, etc. That said, I know it does NOT help all people - but I'd give it more than slim to none odds. ;)

[ICNDonna]

I have to agree --- 40% is a significant number of people. And some think that figure should be higher if all the figures were in. It does take up to six months or more to be effective and many don't give it that long.

Donna

[Hope]

I think you can feel hopeful about elmiron. It has helped me, and I am in the moderate group. It didn't make it perfectly all better, but elmiron and diet is all I need to feel good most of the time. Dare to be hopeful, I know it can be hard.

Take care,
Hope

[Katrina]

I was considered moderate to severe by my doc and elmiron helped me.....but it didn't get rid of the frequency....and well than I got a bit worse again.....but anyway give elmiron a try. I found that some of the people that it didn't work for didn't give it long enough....few that gave it a long enough time felt they got not help. Granted there are good reasons to quit early...but if you can give it atleast a year you should in my mind.

[fireflicker285]

I have read in a couple of doctor's lectures that Elmiron helps "most" people if they are on it for a year to two years. You must give it a long time in some cases. I know I am at the 7th month mark and not improved very much, but I am determined to give it 2 years. What else can you do anyway? You can often combine things with elmiron if needed.

Atarax really helped me but unfortuantley made me too tired and dopey. I have a 17 month old to take care of and need my wits about me right now.

But Good luck and Hang in!

[Dixiefireball]

I have heard many many icers saying it has worked great for them so i have to say it will work the same no matter how bad the ic is.

i took Elimron for a year and half then gave up and went to the heparin cocktail treatments.
My doctor told me that the heparin was stonger then the elimron and I will have to agree personally

[Vampireness]

Well if it takes 6 months or more in general to work and even up to a year for some. And if it's severe and moderate cases, perhaps it will take longer to "heal"?

I have not taken Elmiron long enough, 6 weeks to be exact and my doctor did not want to write me prescription.

Also Elmiron hardly gets into the bladder when it's taken orally...so instillations and oral done at the same time, looks alittle more promising? Along with Atarax or/and Elavil.

That's what I think.

[icjen]

I didn't notice any difference with Elmiron until about a year after taking it. My IC is very stubborn, but still I did notice a slight improvement. I still haven't stopped taking it because I'm not willing to give up what little improvement it does give me. I started the Elmiron almost 2 years ago in combination with Vistaril. Through all the treatments I've tried, those are the only 2 meds I've still hung on to.

[Vampireness]

jen - thats really good to hear. What symptoms has it helped and what were your symptoms previously? What I meant above in summary is the longer you take Elmiron the better the effect. But I guess it's not the case for everyone, that's the bad part.

[icjen]

Well, I still have a considerable amount of symptoms and my problems are far from gone...but, before I started Elmiron I had a constant pain each and every day, and it took about a year to start to notice that sometimes, I wasn't in quite as much pain. My pain is as I said, far from gone, but it did decrease from Elmiron. The nocturia has also decreased. Used to be something like 3-7 times per night, and now is 0-3 times. I definetly wouldn't stop these two meds because even a little difference in the right direction is good.

[massagedoula]

I don't know if my IC is mild or severe because I don't know what other people feel like to compare. It certainly felt severe when it was at its worst last year. But probably it is more mild-moderate, because I can function without pain medication. Its hard to tell an answer to this question...

...But the point is that Elmiron has helped me sooooo much! I have been on it for 7 months, and have weaned down to 2 pills a day from the 3 I had been taking for 6 months. I still have symptoms but they are very manageable, so much that I feel like I almost have a normal life again. I still can't eat alot of things and still find it hard to have sex, but otherwise I feel like if I stayed at this point that I am in, I could function for the rest of my life and not wish for it to be over, like I did when my IC was at its worst.

Also, I am only on Elmiron, no other medication or suppliments.
I tried going off of it completely for 5 days and flared, so I know that it is the Elmiron that is helping me. One day I hope to go off of it completely, and have a baby. Maybe 1-2 more years?

[Vampireness]

icjen - That is definetly a good direction, 0-3 times a night is better than 3-7!! Your right little difference is better than no difference at all. How long have you been taking Elmiron?

massagedoula - If you have a void chart or able to remember, how many times you used to know especially if you experienced nocturia really bad and notice your able to sleep better and function, like you say you are able to right now.

I'd say you probably flared up really bad and this treatment of taking Elmiron has helped you alot. I don't think Elmiron would take 7 months to work on a severe cases, correct me if I'm wrong but I think it takes longer to start working on a badly damaged bladder.

Good luck with getting a baby and hopefully Elmiron will continue giving you good results enough to go off it in the future.

[Allylou]

I just started Elmiron three days ago. My Uro did mention that Elmiron seems to work better on milder, or in the beginning stages. So I am hopefull as I seem to be on the milder side.

But reading this, it made me think of a theory. Perhaps we get the idea that it works on the mild-moderate cases better than severe because they are able to hang on, and take it longer. I can only imagine that the more severe your IC is, the harder it would be to be patient and wait it out. I can only imagine if I was in pain alot of the time, it would be so hard not to toss it the towel and try another route.

[Vampireness]

I just started Elmiron three days ago. My Uro did mention that Elmiron seems to work better on milder, or in the beginning stages. So I am hopefull as I seem to be on the milder side.

But reading this, it made me think of a theory. Perhaps we get the idea that it works on the mild-moderate cases better than severe because they are able to hang on, and take it longer. I can only imagine that the more severe your IC is, the harder it would be to be patient and wait it out. I can only imagine if I was in pain alot of the time, it would be so hard not to toss it the towel and try another route.

Allylou - That could be the case but there are some who tried and their bladder is really bladder damaged that Elmiron just does not work.
Just like how some mild cases not respond to Elmiron, it so happens that severe causes aren't help.
The pain is bigger factor that Elmiron might/might not take time to help.
They need to be given something for it, since pain does make you pee more.
So yeah I can see alots of people just giving up on Elmiron.

My cat was given steriods and they are anti-inflammatory pretty strong...and I wouldn't doubt some are given that when they are in really bad pain. I know someone else did but did not have IC but was in alots of pain.

Good luck on the Elmiron...
Taking anything else?

[Allylou]

I think you can feel hopeful about elmiron. It has helped me, and I am in the moderate group. It didn't make it perfectly all better, but elmiron and diet is all I need to feel good most of the time. Dare to be hopeful, I know it can be hard.
Take care,
Hope

Hi Hope: Can I ask...were you on anything else before elmiron? I am asking cause I am hoping that Elmiron will work for me (I am mild to moderate) and that I can stop Amitripiline eventually. Not that amitripiline has effected me much (perhaps 5 pounds worth of weight) but it would be nice to get done to one med.

[mary124]

I has really helped me (the doctor told my husband I have the severe type) - so between Elmiron -been on it since 1997) and the other medicines that I'm on, of course, diet it helps.

[Vampireness]

[B][COLOR="Purple"]

Hi Hope: Can I ask...were you on anything else before elmiron? I am asking cause I am hoping that Elmiron will work for me (I am mild to moderate) and that I can stop Amitripiline eventually. Not that amitripiline has effected me much (perhaps 5 pounds worth of weight) but it would be nice to get done to one med.


Your on Amitriptyline?? I was prescribed that for bowel movement and pain by a Gastro...if thats the same medication.

It's a small blue pill? Mines 10mg. Causes drowsiness?

Are you on Elmiron now?

[ICLori]

I have heard of Elmiron helping both mild and severe cases, but again it doesn't help everyone, unfortunately. I think that IC'ers should at least try this drug - giving it a minimum of one year. There's not really much harm done by trying, very few people have any side effects (and those that do, their body usually adjusts quickly and they stop having side effects) and some people have had remarkable complete remissions from Elmiron.

It's worth a try. The only reason I tell people it doesn't work for all IC'ers, is that I don't want anyone to feel that they are crazy or something if it doesn't work for them, because that's how I felt when it didn't work for me. I thought, this is the only FDA-approved oral drug for IC, it must help all IC'ers, so what's wrong with me? As it turns out, I wasn't crazy, Elmiron just doesn't work for 100%.

Give it a try - you'll never know unless you try, if it could have given you a remission.

Blessings,
Lori

[Vampireness]

I agree with Lori

But I believe thats the primary drug to try first before other combinations....

Good luck Allylou

[Marcie920]

I believe elmiron helps mild and severe cases of IC. I also agree with Lori.

[kennedy]

Hi all!! :hi:
The severity might not matter, it might just be the individual. I have moderate IC, but Elmiron didn't work for me until I had a higher dose. I took 100mg twice a day for a year, then 200mg twice a day with no results. Now, I take 300mg twice a day and I can tell the difference (of course, now all of my eyelashes have fallen out, but....). So, maybe it's the dose and the individual?

I hope everybody is feeling well!

Kennedy

[di52]

I don't know if I have a mild case or severe, but Elmiron has helped me so much. I will never stop taking it. I'm on it three months now. I feel almost normal. I am not on the IC diet anymore either. EXCEPT I do not drink coffee anymore or eat tomatoes or tomato sauce or citrus fruits.

[di52]

Oh forgot to add I am taking two in the morning and two at night. 100mg each. No hair loss at all.

[Vampireness]

kennedy - Your eyelashes has fallen out???? Are you being serious or joking? I'm sorry if it's for real....What were your symptoms previously and currently?

di52 - I forgot the normal dosage for Elmiron, it seems like your doctors did not give up on Elmiron but adjusted the dosage which many doctors won't think of doing or even do. If it doesnt help at the recommended dosage they just say it doesnt work and make you try something else. Good doctors you both have.

Im sorry about not being able to take tomato, I just love tomatoes though I don't take em....hate the fact though.

[kennedy]

kennedy - Your eyelashes has fallen out???? Are you being serious or joking? I'm sorry if it's for real....What were your symptoms previously and currently?


Haha! I wish I was kidding! I have a couple left on the bottom, but other than that, nothing!! I think it's weird!! Anybody else have that reaction to Elmiron?? I asked my doc if there was anything we could do about it and he said no. Either take the Elmiron and not really have anything more than "superficial side effects" or live with IC and w/o Elmiron. I was so upset at the time but I understand now. It felt like one more thing that IC took away from me!!

Kennedy

[Vampireness]

I'm sorry Kennedy....isn't there anything you can take orally for hair growth or something?
But I did get a shock when you said that LOL good one! LOLOLOL
So your symptoms are better now?

[kennedy]

Hey Vampireness,

Well, after I had spoken to someone about this about 2 and 1/2 yrs ago when they all fell out, they had suggested biotin. Ok, I tried it and not a single one grew back but my hair and nails started growing quick, long and healthy!! So, I kept taking that and started wearing stick-on eyelashes! No one can tell the difference and I still get all the benefits of Elmiron.

There was a month where I had spilled a bottle of the Elmiron into the toiletand ruined the entire month's supply(medicine cabinet above the toilet, not too bright, huh?? :bonk: ) So, for me and I'm sure for many more, it's almost impossible to pay for out of pocket, I went without. That was a rough month and I did notice the increase with frequency and burning. Urgency usually isn't a problem for me, but it was that month!

So, I am an advocate of Elmiron, despite it's unusual side effects (haha, well, just mine!) :rolleyes:

Kennedy