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hair loss

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  • #16
    I have been taking the Biotin for a few months and fish oil for a couple of years. I really started seeing some hair growth in the last couple of months. Especially close to my forehead. The main balding spot (trying to give you a visual) is like a U on the back of my head. I don't have much hair at all at my neck line and on the left side it goes up about 3 inches on the right side it goes almost to my crown. Like people have said that the precentage is low, but I used to have very thick hair and when I started the Elmiron is when I started noticing some bald patches by my neck. When I would vaccuum my bathroom, I would find so much hair in the beater bar. Everytime I washed my hair, there would be a clob at the drain. I had pretty long hair at the time, so I decided to cut my hair short thinking that maybe the weight was too much as well. The hairloss continued. I went to the dermatologist and was put on a couple different treatments. Nothing seemed to work. I have been using either a prescription shampoo, Nioxin (beauty stores) or the Burts Bee for several years. I never blow dry or use any other treatment on my hair. I use a comb as well. Like one of the about replys my doctor has explained the life cycle of our hair, but agrees that mine is definitely on the extreme side. I really believe that Elmiron started the process, since it was about 2 months or so after I started on the Elmiron. I stayed with it for a short time since I new it took several months to see the effects, but by about 6 months with no change and less hair, I stopped.

    Like I said before, there are probably other issues with my hairloss since it has taken so long for hair to grow back including stress, meds, hormone changes, etc, but I am still hopeful that my hair will continue to grow back in. The wigs have made my life much easier.


    • #17
      hair loss

      I had major hair loss that started exactly 2 weeks after taking Elmiron. I have written about my case before on these boards and after researching these boards it seems to me that there are many people who have this happen to them, I think it depends on your luck. Don't even try contacting Elmiron for a solution or advice, I did and they are no help. My doc says about 10% of her patients have had this effect. It was quite depressing for me and took about six months before I started seeing my hair start to fill out again. My hair loss was all over, not one spot. I bought hair extensions which definietly helped and I refused to wear my hair down for a long time. I cried a lot, I think it also depends on how vain you are as well. It was very traumatic for me I will never get on Elmiron again. I am being treated symtomatically now. I take urimar-T and potassium citrate which neutralizes the acid in the urine. These two things work quite well for me.


      • #18
        I've been on Elmiron since Nov. 2004 and have had hair loss. I too saw the 4% statistic and cried that I was in this little of a statistic.

        I had VERY thick, dense hair before. Luckily, it's not falling out in patches, more or less an all over affect, but significant loss. I think I've lost about 1/3 of my hair. No one says anything, but my hairdresser (I worked for heir for years so she knows my hair) said she can tell, but it still is ok because I started with so much hair.

        I went from 3/day to 2/day and didn't notice a change. I do notice a lot more loss when I am stressed. I think that plays a roll in it, but is not the whole thing. I hate when Doctors blame stress for everything they can't explain!!

        I use Volumizing shampoos, mouse, etc that I never dreamed I'd need in my mid thirties and they seem to help fluff it up. I don't plan to quit the Elmiron until I find something that positively is the same without the hair loss.

        My husband once said -" you can grow more hair, you can't grow a new bladder..."

        Good luck, hope it helps.
        Hopekeepers Support Group Leader

        Diagnosed IC 1/07/04
        Fibromyalgia, IBS, PFD, Urethral Instability, GERD, Chronic Unexplained Pelvic Pain for most of my life

        Remember, all is not lost as long as we keep our sense of humor!


        • #19
          I've been taking Elmiron for a year and a half and have noticed that I'm missing a lot more hair from my forehead hairline than I used to. As a solution, I got some beautiful sweeping bangs. Nobody takes my Elmiron away, receding hairline or not!

          I have also noticed that my hair might be thinning about an inch in from each temple. This concerns me more, but not enough to give it up just yet. It's done so much for me, I'm not sure that it would be worth giving it up. Even though I'm only 26 (and darnnit if I don't have some great hair)!

          Diagnosed with IC October 2005


          • #20
            Your symptoms sound like mine except I noticed the first thinning along my neckline. They it started on my forehead. I started cutting my bangs more and more and kept my hair in a pony tail. They I started noticing it falling out along both temples especially the right side. I have been off elmiron so long now, that I have gone through several tests to see if I have elipecia as well, but my hair is finally showing signs of growing back especially on my forehead. I still need my wig, but I am hoping that by this next summer, I will be able to feel comfortable swimming. We have a pool and I have either swam with a cap on or only with my family around.

            I used to have great hair as well. Most of the hair that is growing in gray except for 2 little patches of brown on my forehead.



            • #21
              ok ladies

              ladies..for all your posts

              i quit elmrion for 5 days
              feel great!!

              but the hair is still comming out in the shower

              how long till it stops falling out?

              I couldnt find this answer anywhere??
              Quit ELMIRON due to hair loss
              Cystoprotek ROCKS!

              find me on FACEBOOK -
              search my email [email protected]

              Current Meds:
              AM Cystoprotek & ATARAX 50mg
              Dinner CYSTOPROTEK
              PM Elavil 25mg


              • #22
                It took 2yrs after stopping Elmiron for my hair to return to "normal"
                current meds:
                cytotec 200mcg twice daily

                ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

                dx: hashimoto's thyroiditis 1998
                dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
                dx: endometriosis 2003
                dx: innapropriate sinus tacchicardia 2005

                meds tried but failed:
                elavil (6months)- severe tachycardia
                elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
                a bunch of others

                Me and my best friend's baby (also my Godson!)