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  • #1

    For Those Who Had Hair Loss

    How long were you on Elmiron before you started noticing it?

    I've donated my hair twice to Locks Of Love and have decided to dedicate my hair to this great organization for the rest of my life (until I start to get gray!). It would kill me to lose the ability to donate it... I do it in honor of a woman that I grew to love dearly who just recently passed away due to breast cancer. Any answers for me?
    **I could have my long list of current medications and diagnoses and the other medications that I've tried, but I'm going to focus on something more: words that inspire and motivate me to keep my head up and keep fighting.**

    "A bird doesn't sing because it has an answer, it sings because it has a song."
    "The honorary duty of a human being is to love."
    "The main thing in one's own private world is to try to laugh as much as you cry."
    "If you find it in your heart to care for somebody else, you will have succeeded. "
    "If you don't like something, change it. If you can't change it, change your attitude. Don't complain. "
    "The most called-upon prerequisite of a friend is an accessible ear. "

    These are all the wise words of my hero: Maya Angelou
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  • #2
    I have been on Elmiron for more than two years and have had no hair loss, so you should know it may never happen.

    I think it's usually pretty soon into the therapy that it starts, but someone who's been there will be able to answer the specific question better.
    Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
    Wishing you happiness and good health, and all the best out of life.

    Peace, Carolyn
    ___________________________________________________

    Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


    On the Beach with IC

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    • #3
      month 3

      By month 3..mine started to fall out
      i stopped the medication about 2 weeks ago
      its still falling out..but hope it will stop soon

      but i have a theory about this hair loss

      i think the people who experience it...
      are those people who already have thin blood..
      they are skinny...and are the ones who are always cold in the office.

      at least that decribes me.

      thats just my personal theory.
      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

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      • #4
        It depends, most people say they havn't lost any hair.
        I've been on it since 2000 and my hair didn't start to thin and fall out until a few years later, now I have less than half the amount of hair I had but this is probably rare
        IC Live Journal

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        • #5
          "By month 3..mine started to fall out
          i stopped the medication about 2 weeks ago
          its still falling out..but hope it will stop soon

          but i have a theory about this hair loss

          i think the people who experience it...
          are those people who already have thin blood..
          they are skinny...and are the ones who are always cold in the office.

          at least that decribes me.

          thats just my personal theory"

          Ditto to your theroy, that was practacally the same for me!

          Erika
          IC diagnosed officially via cysto/urodynamics 1/26/07

          Grade II Endometriosis diagnosed via lap 12/11/07

          "Fall down seven times, Stand up eight."

          "Life is a tragedy for those who feel and a comedy for those who think."

          Current Treatments:
          Interstim Since 5/25/07!
          Birth Control

          Comment

          • #6
            Poor iron can certainly be a contributor to hairloss. That is why my doctors did so many tests on me to see why I am so enemic even though I take iron and try to eat foods with iron in them. I meet 2 out of the 3. I am certainly not skinny! I am freezing right now and have a blanket across my legs. My hairloss started about 2 to 3 months into me taking Elmiron. I kept taking it for a few months to see if it would work. When I saw that it wasn't working, I stopped, but that was several years ago. I am still going through hairloss which my dermatologist and primary care doctors say that can also be caused due to my other meds as well as the stress that my body has been though all these years with IC. I have researched hairloss quite a bit and read all about alopecia. That is why I started looking into my iron deficiency problem. My thyroid is fine and I don't have cancer which really worried me since my low iron level can't be explained.

            Comment

            • #7
              I have been on it for 6 months and I am just now noticing more hair loss, but I've also been under a lot of stress, so I think the combination just isn't good for me at the moment.

              Comment

              • #8
                Elmiron Hair Loss

                This is my first post. I am so glad I joined! I was diagnosed in Jan. 07 after a year of trying to figure out what was wrong.

                My uro. put my on Elmiron 3x a day. The first 2 weeks I had no problems. At 2 weeks I had horrible stomach problems. At week 4 my hair started falling out. I was feeling worse physically as well as mentally on the Elmiron. I went off and began bladder instill. cocktails the same day. Today I go for my 5th treatment and they seem to be helping quite a bit. I am keeping my fingers crossed that they continue to work. The nurse that does my instills. is wonderful and very caring. That has been key to my treament!

                I hope that those of you that do take Emiron and have success continue to do so.

                Thanks for all the advise! I hoep to hear more success stories! We all need to know that there is a light at the end of the tunnel!

                Melissa

                Comment

                • #9
                  Cockeyed theory

                  My own personal theory as to why Elmiron causes hair loss in some people is that it is due to a hormone imbalance. I think Elmiron blocks some estrogen. I think this because right after I started taking it I had a re occurance of mild hot flashes. I upped my estrogen and it stopped.
                  Thyroid hormones can also play a part in hair loss, so if you are losing hair you might want to get a hormone profile to see whats up?
                  I have been on Elmiron for a year and notice no hair loss or problems. I feel it has helped me a lot.
                  Sammi

                  Sammi

                  Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                  Diagnosis: IC, PFD (both in remission)

                  Comment

                  • #10
                    Elmiron Hair Loss

                    I am glad to hear the Elmiron worked for you. Since I have been off of the Elmiron I have felt much much better from all the side effects I was having. My body is funny when it comes to meds. The bladder intstills. have been much better for me. I guess it is a trial and error with IC. Whatever works is a blessing!

                    Hope you continue to have success!
                    Meilssa

                    Comment

                    • #11
                      me oh my hair

                      haha... I don't mean to laugh. It just feels good. Totally out of place on this one. I started in October on the Elmiron. My already thin hair has been coming out piece by piece quite consistantly since the first month or two after I started. When I brush my hair lots comes out, and in addition, my hair is just breaking all over the place! I have been taking biotin for the hair cuz its good for skin, hair, and nails, supposedly (I heard about it from an expert in cosmotology,haha on the ellen show) so I figured.. why not? I would like to say that it is working, and believe that it is too, but that's probably the most Ill figure out right now cuz.. honestly, I have been too horrified lately over it.. to even pay it much attention... best of luck to you.. and I hope that no one ever has to go through the hair loss with the Elmiron. Especially, since it can help with the I.C. so much you know?! For those of us that do, let me know if you find a miracle cure! I will try it! Elsewise, at least we can say we are in a little less pain atleast then.. ay? Warmest regards.. and all the best to you
                      Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

                      Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

                      Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

                      Comment

                      • #12
                        Well I'm a little nervous now... Friday begins my third week into my Elmiron treatment, so we'll see what happens, I guess. Thanks for all of your responses!
                        **I could have my long list of current medications and diagnoses and the other medications that I've tried, but I'm going to focus on something more: words that inspire and motivate me to keep my head up and keep fighting.**

                        "A bird doesn't sing because it has an answer, it sings because it has a song."
                        "The honorary duty of a human being is to love."
                        "The main thing in one's own private world is to try to laugh as much as you cry."
                        "If you find it in your heart to care for somebody else, you will have succeeded. "
                        "If you don't like something, change it. If you can't change it, change your attitude. Don't complain. "
                        "The most called-upon prerequisite of a friend is an accessible ear. "

                        These are all the wise words of my hero: Maya Angelou

                        Comment

                        • #13
                          I'm on my 2nd month of Elmiron and haven't noticed a thing. My hair is thicker than ever. I don't even think I'd care if I lost some hahaha.

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