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Newly Diagnosed and having trouble with Elmiron

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  • Newly Diagnosed and having trouble with Elmiron

    I'm a male in his mid 30's living in the Washington, DC area who was diagnosed with IC about a month ago. Like many of the people in this forum, I'd bounced around to several doctors, taken dozens of tests, and tried many different drugs before I found out that I have IC. In my case, it took four years as my symptoms gradually got worse and I got more and more frustrated.

    Last month, my urologist performed a cystoscopy with hydrodistention and took a biopsy from my bladder. The diagnosis came back as acute chronic IC with Hunner ulcers. I was relieved to at last to have a clear diagnosis and quickly adopted the dietary guidelines on this website and started Elmiron.

    Unfortunately, my optimism took a serious hit after being hospitalized last week when my bladder started hemorrhaging uncontrollably and filled up with large clots that seriously obstructed my urinary tract. I had been bleeding off and on after the cysto, but my doctor said that was normal and would go away. While I was traveling on a business trip, the bleeding and clotting got worse and I was hospitalized in a random city in between flights. They kept me on a catheter and irrigated my bladder for two days and took me off Elmiron, which cleared me up and I headed home.

    I was nervous about taking Elmiron in the first place when I read that it's a "mild" blood thinner. About a year ago, I started taking baby aspirin for my heart and a couple weeks later I started to urinate a lot of blood and have very large clots. I stopped taking the baby aspirin and the bleeding quickly stopped. For the past several years, tests have consistently found a microscopic amount of blood in my urine, but nothing visible until then.

    In addition to sharing my story, I wanted to know if anyone else has experienced a similar situation with Elmiron. The urologist at the hospital and my urologist at home both want me to start taking Elmiron after I'm "fully healed." They think the bleeding was caused by a scab falling off from the biopsy site done during the cysto, but based on my previous experience I think my bladder can't tolerate blood thinners. I do have moderate IC symptoms and would like to find a treatment that can help me, but I don't want to spend more time in the hospital either.

    Thanks for taking the time to read this and I look forward to any insight or information you can share.

  • #2
    I do understand your concerns. One thing you might consider is to try it again, but at the first sign of bleeding, stop the medication and call your doctor. I had to stop taking elmiron because of a headache side effect --- but there are lots of other medications you can try.

    Sending healing thoughts,
    Donna
    Last edited by ICNDonna; 05-14-2011, 04:48 AM.
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    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.
    [3MG]

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

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    • #3
      Thanks, Donna. That's a good suggestion.

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      • #4
        blood test

        Since I take supplements that cause blood thinning, I insist on having blood tests that see how fast your blood clots and how thin it is. I worry about it so I do have to insist for this along with liver kidney function tests. Do this every few months with your doctor. If you take elmiron you need to advocate.
        I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

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        • #5
          Would Cystoprotek help possibly?
          28 yrs old,

          I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

          What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

          Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



          Me in my graduation gown!

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          • #6
            Hi there! I'm sorry to hear about your recent hospitalization away from home. It sounds like you have been through A LOT! I also couldn't tolerate Elmiron but did not have the reaction you did. I know it can be scary to have to try taking a medication again that you reacted so badly to. I tried the Elmiron a second time myself - - here's a little bit about what happened to me:

            When I started to take the Elmiron, I noticed my pain, pressure, discomfort, urgency and frequency was increasing. I wasn't sure if it was a coincidence or from the Elmiron. After being on it for a few days the pain and discomfort was awful, so I called my new uro. He had me stop taking it for about 2 weeks (I think) to get i out of my system and then he had me restart it. When I restarted it, the pain and overwhelming discomfort came back almost immediately, yet I still took a few doses of it to be sure. It was awful! My Dr. advised that I never take it again. I haven't had it since. In fact he listed it in my medical chart as being allergic to it, cause he said I should never take it again. I guess I'm one of the ones who had bad side effects with taking it. Fortunately, he prescribed other meds which really help me: Ditropan XL, Atarax, and Elavil. I do very well on them.

            I hope you find a treatment regimen that works for you and that you do not have to have anymore stays in the hospital. Sending warm healing thoughts and wishes your way!

            Take care,
            Jennifer
            I speak of my personal experience only to provide support to others who have IC. I am not offering professional advice in any way. All patients are different and may respond differently to various remedies and medical treatments. These posts are based on my personal experience and are not meant to be viewed as medical advice nor do they replace the proper evaluation and treatment by a medical professional or healthcare provider. Please seek out treatment and medical advice from your doctor and medical team.

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