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Elmiron - side effects

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  • Elmiron - side effects

    Good Morning Everyone!

    So I had the hydrodistention again (second time...first time I was in remission for 4 years), didn't really have the same effect this time And the recovery was a lot longer too...anyway, I'm going in for a bladder lift in the next few months, but I've been given Elmiron for the first time. I came off Elvil and I'm still doing some natural therapy - but the naturo is having a hard time getting some of the stuff in the medley.
    So my concerns, the pharmacist indicated that hairloss can occur, and that its generally localized to one small area...can anyone comment to this please. I hate being on medication, I feel awful most of the time on it, I often wonder is the IC pain worse or the nausea/migranes and fatigue worse...??



    Elvil - 25mg 1X/day - helped a bit, came off after surgery
    Elmiron - 100mg 3X/day Just started this yesterday

    Natural treatment
    Quercitin, Bovine colostrum, Serra Force, Grapefruit and Oregano extract, B12

    Physical Therapy
    Yoga/Pilates/tai chi 3 X per week
    1-2 hours of miderate to intense exercise 5 days a week

  • #2
    Only a very small percentage of people taking elmiron experience any hair loss. I suggest to people who are beginning to take it to do what I call a brush test first. Take a hair-free hair brush and brush your hair thoroughly, then comb the hair from the brush and store it in a plastic sandwich bag. Then if you think you are losing hair from elmiron, do another brush test and compare to the stored hair. We all lose some hair with combing and brushing --- having something to use for a comparison can help ease our fears.

    Warm hugs,
    Stay safe

    Elmiron Eye Disease Information Center -
    Elmiron Eye Disease Fact Sheet (Downloadable) -

    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:


    Diet list:

    AUA Guidelines:

    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


    • #3
      This seems to be a theme today! I will tell you my experience with fearing a medication. I was terrified to take cymbalta because of the side effects. I suffered for a long time until I finally couldn't stand it any longer. Turns out that the cymbalta was amazing for my fibro pain and seems to help my IC pain as well.

      When I was first diagnosed the only drug I had read about for IC was elmiron. I, just like you was petrified about the chance of hair loss. Here we are with this awful disease that makes us feel less than a whole person, and there is a chance we may have hair loss! A double wammy! Try to keep in mind that it isn't a dangerous side effect, merely a cosmetic one.(I say merely but I do know how devastating the thought of hair loss can be) If you do have hair loss, it will stop and re-grow and soon as you stop the medication. There is a very good chance that you won't have any hair loss and the elmiron will help you. I say take the chance, it could be the answer to your troubles, and wouldn't you hate to have missed a chance to feel better?

      Remember, it does take a while for the elmiron to begin working. So please, if you do decide to try it give it a good opportunity to work. I read where people take it for 6 months and say it didn't work for them. It honestly took around a year for me to see significant relief from the elmiron. (I did have other meds during that time to help me) Now, I wouldn't let anyone take me off of elmiron, I know it is helping me that much! I kept asking if I should keep taking it and my Dr would always so "yes". I am so glad he did.

      Whatever you decide, I hope you find relief soon. Let us know what you decide and how you are doing.
      Link to the patient information, everything from What is IC? to Disability

      American Urological Association Clinical Guideline
      Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


      • #4

        I was on elmiron for about a month my uro took me off of them but he didnt tell me why. My hair is still shedding from elmiron but I do not have bald spots.
        <a href=";current=Picture005.jpg" target="_blank"><img src="" border="0" alt="Photobucket" ></a>


        • #5
          I have been taking Elmiron since 1997. Most hair stylists comment to me that I have very thick hair. I think that each of our bodies will respond differently to any drug that we use. I think that this is true because we are the whole of all the things that we put into our bodies -- We all eat different diets and take different combinations of drugs. I wish you luck in whatever decision you make about the Elmiron. I hope that you find some combo that works for you. Warm regards, Mare


          • #6
            Hi everyone,

            I have been given elmiron and have been sitting on it for over a week. Soooo scared to start it Afraid of the headaches and nausea and of course hair loss. I have been doing alot of research and that can be over whelming with so many opinions. I guess I am just looking for feedback and any suggestions/advice you may be able to give me. I don't get alot of pain mine is more terrible burning. I just don't want to miss out on the chance to feel better if the side effects are truly minimal
            Thanks KierD


            • #7
              I have tried soooo many meds these last few months and I just started Elmiron two weeks ago. I feel like of everything I've tried this is the mildest drug! Don't know if it works yet, but its definitely the easiest on my system. It doesn't cause the extreme dry mouth or constipation that just about everything else does, doesn't make me groggy or sleepy, doesn't cause retention like so many other things I've tried. I'm not %100 sure if it has caused me headaches, but my advice is to start taking it. It's too soon for me to know if it helps me, but I'm just gonna keep on taking it because the side effects for me have almost been non-existent. Good luck!!
              IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
              Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
              Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

              Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
              Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
              Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
              Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH


              • #8
                thank you for your input, I have been stewing over what my choice should be and I have read sooo much negative things about it. I hope you have continued luck with this


                • #9
                  Elmiron for about 5 years and I believe it has helped me a lot. Question: I have the skin of a newborn baby or a 100 year old person. Thin and bruises easy. Even my bra hurts me terrible. It's like the inquisition, even my glasses hurt me . Do you think it is due to Elmiron??? Ziggy