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Any Advice? Please help!

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  • Any Advice? Please help! greatest fear has happened, my hair is falling out! Not to scare anyone, only the people closest to me can tell but its definitely a problem. Also, on a side eyebrows are also getting patchy and that a side effect as well? ( I guess hair is hair). Anyway, the problem is that Elmiron has REALLY helped me and I really don't want to stop taking it but I am 27 and don't want to be bald either! So I guess my question is directed to any ladies that experienced these symptoms while on elmiron...did any of you decrease your dose or stop for two weeks? If you did, did it help stop the hair loss symptoms? Thanks in advance for any help!


  • #2
    Good question. I myself can't take Elmiron, it made my IC worse.
    But, I'm wondering if using it in an instillation might not affect the hair, but still provide the bladder lining benefit? I'm wondering, have no idea. Anyone out there know about this?

    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.

    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
    Source - Pinterest

    Current treatments:
    -IC diet
    -Elavil 50mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic when doing an instillation to prevent UTI
    -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
    -Dye Free Benadryl 50 mg at bedtime
    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
    -Managing stress= VERY important!
    -Fur therapy: Hugging the cat!


    • #3
      I had hair loss too at first. I did back down on my dose for a month and then upped it again. I'd say my hair was falling out more than normal for a good 8 months. No patches of hair loss just all over. I'm on 500mg of Elmiron now and the hair loss has stopped,



      • #4

        When you backed down on your dose did the hair loss decrease? How much were you taking when you decreased your dose? How long have you been on the medicine?


        • #5
          Around my second month of being on Elmiron, my hair started falling out a LOT. I developed two pretty obvious bald/thinning hair spots, one on each side of my head. Couldn't wear a pony tail. When I would take a shower, MASSIVE amounts of hair would come out. I was only at 300mg. I freaked out, obviously, but my husband made me give it more time. My hair loss did stop on its own, and the thinning hair has seemed to get better, somewhat. I now just have much less hair than before, which honestly, has been kind of positive for me. I had SO MUCH HAIR before. I am now at month 6, and am losing normal amounts of hair, and no one but me can tell I have less hair than before. So, I will NOT promise you it will stop/get better on its own, but mine did.
          Symtoms started July 2010.
          Severe pelvic floor pain only.

          2 time PT graduate!
          In medical remission since August 2011; able to eat and drink anything I want currently.

          IC meds:
          200 mg Elmiron in the morning
          100 mg Elmiron @ night
          Macrobid after intercourse

          03/11 07/11 01/12
          If at first you don't succeed: 07/26/2013!


          • #6
            The reports of hair loss from the studies on Elmiron indicate that the hair loss is centralized to one spot or more, not over all thinning. I am not saying that you are not experiencing hair loss at all, I just wanted to mention that sometimes there are other reasons for hair thinning such as stress....Heaven knows we have plenty of stress with IC. I also had a bout with thinning hair and I was on no medications, the only reason I ever came up with is that it was perhaps hormonal.
            If you stop the Elmiron your hair will grow back. I have read where some people stop and then start the medication again with no problems at all.
            I have never seen anything regarding the eybrows thinning or getting patchy. You might want to speak with a dermatologist, the thinning could be caused be something else, if it were me, I would want to be sure.

            I hope you find an answer soon and that you are able to continue the elmiron. For me, it took a long time to work but it really helps me now.

            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


            • #7
              @ MeResque:

              My hair started to fall out around the two month mark as well. I decided to stick with it, I am hoping it will taper off. And if it is from stress and not the elmiron, Im hoping that since I just graduated I will be less stressed.