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Just wondering if Elmiron helps "most" people

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  • sleepyangel30
    replied
    They was not working for me, I found something els that is working for me now which is the aloe vera caps , They are pure natural avc-100 with coral calcium.

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  • gypsyjoy
    replied
    BarbRn and Peggy Anne

    This is funny, my son and his wife live in Henderson also and my daughter-in- Law also has IC . Hers is 99% under control.
    I was living in Boulder City until Dec.2003.
    JOY

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  • Annie2
    replied
    Just want to add my praise of Elmiron. I have been on it 10 months now. At about 3 months I first noticed slight improvement of my symptoms. Since then, I have had VERY GRADUAL but fairly steady improvement. Last month I had a flare and was afraid that might be the end of the road for me as far as how much improvement I would get from the Elmiron. Not so! Once I was past that ugly little flare (it was small compared to the flares I had in the beginning), I went back to feeling better. It dawned on me yesterday that this week has been the best I have felt since my IC journey began 1 1/2 years ago. While I don't feel "normal" yet, I know I am getting close to that. A year ago I was absolutely miserable. How grateful I am that Elmiron is working for me and I NEVER want to stop taking it! Others have stated the importance of allowing plenty of time for it to work. I believe that is the key to success with this med. I know how HARD it is to be patient and just hope it will work. Now I can say it was so worth the wait! To those just beginning treatment with Elmiron, hang in there! I really hope it will work for you, too!

    Annie

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  • Ginny
    replied
    Elmiron

    I believe the actual % of people helped by Elmiron is 37%. Most do not see an improvement until at least 6 months.
    Hope you are one of those 37%.

    Ginny

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  • poetgirl
    replied
    Elmiron has helped me a lot. It did take a while before I noticed significant improvement - maybe 3-4 months. I'm also using it in conjunction with other meds and I think they have all contributed to my overall improvement. Most days I feel perfectly fine. I've been on Elmiron about a year now. I was taking 400 mg per day but have cut it down to 200 mg without any change in my condition.

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  • ChrissyH
    replied
    So good to see that Elmiron is helping some of you. I had been on it previously for about a year, then was off for almost four years. Now my IC has flared back up and I am back on Elmiron for almost five months now and I plan on never stopping it again. I hope to get good results with it again. One year ago I was drinking OJ every morning and adding extra tomatoes to everything without any problems. I miss that and hope to one day feel better again. Good luck to you all.

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  • vm
    replied
    Elmiron has been my godsend, too. Very gradual help, but it has just gotten better and better over the last 2 and a half years. I have had no long term bad side effects whatsoever. Some nausea the first few days, but after that nothing.

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  • MelanieJ
    replied
    Hi there,
    I've been on Elmiron for, I think, about 4 years now and it has been my godsend. I'd say about 95-99% of the time, I have no symptoms at all. As someone else said, it was a gradual thing. I definitely found the longer I was on it, the better and better I felt. I know it's hard to wait, but if it works for you, it will change your life. And a research study a while back showed evidence that the longer people stay on Elmiron, the better results they got. The project was originally meant to see if larger doses of Elmiron worked more effectively. That doesn't seem to be the case, but they did find that the length of time was the key.

    Good luck to you!!!
    Melanie J.

    Leave a comment:


  • yorkyloverx3
    replied
    elmiron

    Peggy Anne
    I have gained alot of weight also with tummy very swollen (bloated) But I have been on elmiron for 3 years now. I stopped it once and my IC flared up big time. I was taking 6 pills a day.
    My hair is getting very thin also. I would like to stop. Now I take 4 pills day. Symptons are all the same. My ur believes in elmiron, and he does not want me off.
    Denise

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  • Babs RN
    replied
    I live in Henderson too!

    Peggy Anne,
    Hi, I live in Henderson too! I live in McDonald Ranch...Wow..small world!


    Hugs,
    Barb

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  • Peggy Anne
    replied
    Has anyone experienced water retention and/or weight gain while taking Elmiron? Ive only been taking it for a couple of weeks and ive gained 5 lbs and feel like a blown up balloon! Nothing else in my life has changed, my diet and exercise are the same so I was wondering if its the Elmiron?? Thanks!

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  • pleasant1
    replied
    I have been on Elmiron for a year now, and still not sure if it is helping. I have had to have bladder instillations twice a month for the last year to help with the pressure and urgency, but how do I know if it would be worse without the Elmiron? I recently have developed stomach problems and have read on other message boards of other people who suddenly did the same after being on it for a long time. Anyone else experience this? Thanks all.

    Leave a comment:


  • Alexa
    replied
    Yes....it helped me tremendously. I was on it for a total of 3 years, and eventually weaned myself off. Now I manage my IC symptoms entirely with diet. But it did take a few months to "kick in"...hang in there!


    Alexa

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  • sleepyangel30
    replied
    I was on it I'm allgeric to it......

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  • dixiefireball
    replied
    I want knock on Elimron because it did help me some but not enough i took it for two years now i take the dmso treatments at home one to three times a day and that has helped me more then the elimron pill alone. I hear alot of sucess story on elimron and my uro has also told me after looking after my bladder after taking elimron my bladder did look better but my pain didn't slow down at all. that was the sad part on my end. but as my personal exp. goes I will stick to my dmso. grouphug

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