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  1. #1
    ICN Member Lovetoread's Avatar
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    Elmiron Success Story

    Just wanted to share a good story about Elmiron. I know a lot of people can not take it, but for those of you that can - stick with it!
    I have been taking Elmiron for about 2.5 years. I knew that I was feeling better, able to eat more foods, no flares, etc... The final proof that it is working came just this past week. I got a UTI. With my IC diagnosis and before elmiron, a UTI would cause me so much pain for at least a month (even after the bacteria was gone). I started my antibiotics and prepared for a month of misery. To my surprise, after 2 days on the antibiotic, I started to feel better. By day 3, I had NO symptoms at all!!! I have been off the antibiotic for about a week now and feel great!
    This is such a rotten disease to have and sometimes the "thought" of a flare can be just as bad as having a flare. I wish everyone a happy, healthy bladder!
    Tina

    Officially diagnosed with Moderate to Severe IC in June, 2008 via cysto/hydro.

    Currently Taking Elmiron (2xday), Hydroxyzine/Atarax (10 mg at bedtime), and Vesicare (10 mg at night).

  2. #2
    Forum Manager ICNDonna's Avatar
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    Thank you so much for sharing your success. Those who are just getting started on elmiron will be pleased to read it.

    I'm glad you're doing well.


    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Diet list: https://www.ic-network.com/patient-r...on/#icfoodlist

    You'll find my story at: http://www.ic-network.com/conditions...tories/page/6/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Anyone who says something is foolproof hasn't met a determined fool
    .....My Meggie.....

  3. #3
    ICN Member
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    Great Tina! I am likewise. Elmiron has helped me greatly. All of us with IC have that black cloud hanging over us (flare) I try to think of my comfortable place and not think of the negative. As Donna said, your post gives those who are considering Elmiron much hope. In my case it took time to kick in but it did. I still am very careful about what I eat. I don't want to push my luck. Thank you. Hugs, Ziggy

  4. #4
    ICN Member
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    I have only been on it a month. Im nervous that I maybe waisting my money on it cause I hear that it doesnt work for alot of people. But I also hear that alot of people dont give it enough time. thanks for posting ur sucess storie it gives me hope.
    Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

    I have moderate-severe IC

    Currently stopped taking all medications due to pregnancy

  5. #5
    ICN Member mary124's Avatar
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    I agree it works but it does take some time. I have been on it now since 1997 and am doing great. Just got to have patience.

  6. #6
    ICN Member
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    Mary124-How low did it take for you to notice a difference while on elmiron?
    Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

    I have moderate-severe IC

    Currently stopped taking all medications due to pregnancy

  7. #7
    ICN Member Jereme's Avatar
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    I think elmiron does help me. I didn't think that it did until I was tapering off and noticed some more symptoms. I don't think it is the only thing that helps, but is definitely part of what helps. I also think there is some nerve issues for me as well as musculoskeletal issues. Today isn't my best day, but yesterday was great and who knows what tomorrow will bring. One day at a time and accepting the good and bad days is how I live a full life inspite of this condition.
    What helps
    Elmiron 200 mg bid
    Wellbutrin XL anxiety and depression
    Oxybutynin ER 10 mg
    Yoga


    tried and failed
    Cardura, Hytrin, Flomax, Prosed DS, Vesicare, Pyridium, Cystoprotek (caused GI problems), Lyrica, Pamelor

    "We can't wait until the storm is over. We need to learn to dance in the rain."

  8. #8
    ICN Member mary124's Avatar
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    To Needs relief:

    I really can't remember as its been so long, but I can tell you now that when I started taking this medication I was taking 6 a day and now I am taking just 3). I do watch what I eat, I am not as diet sensitve as a lot here, so I can have my cup of coffee in the morning and a few other things, but I can't have them together.

  9. #9
    ICN Member jonb1's Avatar
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    I've been taking for 3 months and i am still waiting for some results. I hope it helps with frequency eventually. Thanks for all the comments of positive results..it gives much hope.

    Jonathan

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