Has Anyone ever Quit Elmiron?

[kimberlyJB]

I am recently unemployed and recentlyfound out the true cost of Elmiron and without good benefits, am considering a trial period without Elmiron.

But is not the only reason. In 2002, I had pelvic surgery to remove a cyst. The aftermath of the surgery left me with severe pain. during this time I began taking Elmiron. Since the surgery, my IC pain has become increasingly manageable. (although it has plateaud lately) and I do still get flares, even on the Elmiron.

I have always wondered, however, how much of the relief to attribute to the Elmiron or the removal of the really large pelvic cyst. And I would love to not have to be on this medication for the rest of my life. But, of course, I will if I have to.

This being said. Has anyone ever stopped taking Elmiron to test the waters (a brave soul indeed).

I am also going to check out the financial assistance information that I have seen on the site. but would like to get some input from other ICers first.

thanks,

Kim

[Alexa]

I eventually weaned myself off Elmiron after 3 years on it because I was feeling so much better. I am doing fine now, and managing my symptoms with a very strict IC diet.

Good luck!

Alexa

[Dixiefireball]

let your doctor know your out of work they can fill out a form and get the quickly for you or you can check out the low income board and there are ways of getting it threw the web site also. please check them out.
sending you hugs and prayers
Rhonda:kiss:

[tillysav]

Hi Kim,

I stopped Elmiron today because of a side effect. Now "Testing the Waters" as you call it. I took Elmiron 4 1/2 months and was feeling better. I would have stayed on it longer because it did help me with pain, but I could not tolerate the side effect. My hope is that Elmiron helped coat my bladder (forever) and I will continue to feel better. I will keep you posted of any progress or set backs from discontinued Elmiron.

P.S. IC diet is a must for me...hope it's enough. Here goes. :thumbsup:

Good luck to you. :kiss:

[kimberlyJB]

Thanks for the replies. It's good to hear that others have done well without it.

I think I am going to try to get it through the patient assistance program. To have it incase things don't go well.

Kim

:pray:

[franya]

Hi

I was on Elmiron for about a year and I did not think it was working. I went off it and about 6 months later had a hydro and my ic is dormant or in remission. But I had an infection called trighanitis and he scraped it all out so I do not now if that will heal. I am still in a lot of pain and I do not know why. But it was not the worse thing going off the Elmiron

Franya

[jaime15]

Hi Kim,
The first time I was on Elmiron it was for two years. I stopped taking it for a pregnancy.
After 4 months of a remission after the birth of our son, I had to go back on it. So it has now been over 2 1/2 years and I still have the occasional flare. (Pretty tough ones around pms week.)
I did take my time once picking up a refill last year. So for 4 days I skipped my doses........boy did I regret that. I was in a flare for weeks...........So I knew, for me, the elmiron really was working. But to this day I wouldn't know for sure if I hadn't "tried life w/o elmiron".;)
I hope everything works out for you! I agree with you too....the stuff sure is expensive!
Fuzzy hugs to you...:cat:

[Joyaur]

I stopped Elmiron after taking it for four years...FLARES BIG TIME !!!!!!

On it again...no flares...

[kadi]

I took Elmiron for 8 weeks. It actually made me worse. I am better off it than on it... I really wish it had worked:(

[dawnfawn]

:pray: I don't know what to say. I have been on elmiron for over 4 years. I am in total remission. I started on three pills a day and cut to two. I see no difference I feel exactly the same, I don't trust my urologist because he is on the board of the company that manufactures elmiron. He told me to take 4 pills a day when I told him I cut down to two!!! I thought I had a bleeding ulcer and stopped taking it for two weeks and saw no difference. I am also on HRT. I am weaning my way off the HRT. I went on the HRT the same time as the elmiron. I never knew which one worked. I am afraid to completely go off elmiron. The urologist has said that he has patients who have weaned but they were younger. I don't know what that would have to do with it. As I said before I dont trust him. Once I am fully off the HRT I intend to drop the elmiron to one a day. I don't trust a drug that is in the heparin family. Any comments??

[Nicole in ATL]

I took elmiron for about 9 months and then stopped it at my uro's suggestion (gradually went off). It didn't make much of a difference in my symptoms. I didn't get worse after I stopped it. I wish elmiron worked better for me.

Nicole

[Reba in Arkansas]

I stopped because my hair fell out. I looked like a drowned rat when I washed my hair. It was way too much for me to take. I never thought that it would bother me that much, but it did.
I didn't get any relief from my symptoms and I just felt terrible on the medication. Everyone reacts differently though.
I hope it works out for you.
:kiss:
Reba

[ChrissyH]

I was off Elmiron for three blissful years while I was in a remission. Now it is back full blown and I'm back on Elmiron. I don't think that I will ever stop taking Elmiron again. Not unless something better comes along.

[kimberlyJB]

It definitely is a confounding disease isn't it?

nothing works the same for two people and it's so hard to get a take on what to attribute the remission or flares too because the IC does not occur in a vacuum. If only it did right?

I am thinking that I will try to stay on it, but only if I can get it through the drug assistance program.

My doctor also really pushes the Elmiron and wanted me to take 6 a day, at one point. I don't tell him that I only take two pills once a day, because he says it's not enough to make a difference, but I honestly think it helps.

well good luck to all. If I have to quit it, I will send out a follow up status.

:pray:

[DanaW]

I am one who couldn't take Elmiron. I got terrible headaches from it. I tried for 2 weeks and then had to stop. Which is a good thing because now I am loosing hair because of low thyroid and I can not imagine what would have happened to my hair if I had added Elimiron to the equation. I hope it works for you! Dana

[pleasant1]

I was on Elmiron for a year and developed bleeding in my stomach from severe gastritis, and also colitis. Never was sure the Elmiron was doing anything as I have needed bladder instillations the whole time about twice a month, but was afraid flares would be worse if I stopped, and my urologist kept saying to keep taking it. Also lost a lot of weight and had decreased appetite. After the discovery of the bleeding and colitis, my family doctor took me off of the Elmiron. Have not taken it for about a month and a half, and doing great, but wondered how long it would take to really know if it had been working now that I am off, since it can take 6 months to a year to be effective. Have an appointment with my urologist for checkup next week, but I can't see myself going back on it after what I have been through. The messages of those that have gone off and done fine are greatly encouraging! Thank you.

[dawnfawn]

If IC is not progressive why do we have to stay on elmiron forever according to the uros. If it is cured or arrested with a new gag layer you should be able to get off elmiron. Also when I asked my uro to reexamine the bladder he refused. I see him once a year he never examines me and he charges my insurance for an office visit at 300.00. He just renews the rx. Is this fraud?

[Alexa]

Elmiron is not a cure, nor does it claim to be one - it is one of many treatment options available for IC that helps treat IC SYMPTOMS. It does not repair the damage to the GAG layer forever. Unfortunately there is no cure for IC, YET, but I have faith there will be a breakthrough soon! :)

Alexa

[sunnidee]

I took Elmiron for 9 months and didn't see much difference than I had from taking Elvail for the past fifteen years. I had a real bad flare up just before I quit. I have been off it since March and haven't had a flare up since the middle of February just before I quit. So, makes no sense really... I am sticking to the Elvail which is given me the most success.

Sunni