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  • #1

    How many??

    I just starting taking elmiron. My doctor has me on 2 pills in morning, 2 pills at night. I have been reading other post and it seems that everyone starts out with one pills 3x a day. I hope my hair does not fall out. Is anyone else taking more?
    Meds on now:

    dextro 10mg

    5000mg Vitamin D- when tested, I was sooo low.
    Compound Hormones- Had hysterectomy when 24, ovaries out 37

    At night:


    4mg Zanaflex- Fibro & PFD
    plendil- Raynalds

    I have Fibro, IC, IBS, PFD, Raynauds.

    Tried:

    Past Meds
    Lexpro- changed to Cymbalta for better pain relief –off both
    Ultram – three times a day. Helped , I was tired of always being so tired.
    Elmiron-took for a year-
    Topamax-Did not need anymore since on dextro.
    Atarax- did not need anymore

    Pictures: Hubby & Me, Ozzy, My three Sons!!
    What a proud Mother I am!!



    .
    Tags: None
  • #2
    I'm taking 1 pill three times a day and I haven't had any problems with it. I've been on it since Nov and haven't had any hair loss, I think it's a very small perctange of people that actually have hair loss.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

    Comment

    • #3
      6 - a day

      I am on two Elmiron three times a day for a total of 6. My Uro upped that from what the Gyno RXed. The rational is that Elmiron is not well absorbed and the Uro says he has had much better luck with this dose. I think the drug company is also doing some research with the higher dose.
      I have no side effects and no hair loss, been on it almost a year.
      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

      • #4
        I started off with two pills three times a day and have now dropped down to 2 pills twice a day. I haven't had any hair loss but did have a bit of increased heartburn from this medicine. That is my only side effect and the drug has worked well for my IC. Good luck with it!
        hugs,
        Janie

        Comment

        • #5
          I started on 3 pills twice per day. I'm now down to 3 pills once per day taken in the evening. I experienced a bit more hair-shedding than normal when first starting the med, though it wasnt noticeable to others.

          Take care.
          Diana
          (\__/)
          (o.O )
          (> < ) This is Bunny. He's on his way to world domination.

          Comment

          • #6
            i did have hair loss

            I have a theory about this hair loss...

            if you the skinny girl..in the office..who is always cold anyway.
            you will experience hair loss.

            at least that explains me.
            i quit elmiron 3 weeks ago...from the hair loss.
            and its still falling out.
            hoping it will stop soon

            i wish i would have started out..with a lesser dose.
            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

            Comment

            • #7
              I started with 1 pill 3 x day; now I'm taking 2 pills 3 x day. I have been taking Elmiron since 1998 without any side effects. Good Luck.

              Comment

              • #8
                I have BIG TIME HAIRLOSS

                I just quit taking it due to hair loss. It is shedding extremely bad in my bang area. I am lucky I have a thick head of hair. I hated to make this decision but I don't want to be bald and have IC. That I cannot deal with. I was only taking one pill a day at night time. Any more than that and my hair comes out even worse. It also gives me headaches if I take more than one.
                Not everyone has hair loss. I read the post before my and it said if you are thin and always cold you could have hairloss. I am always cold but I would not call myself skinny. I am 5'-9" and wear a size 12. I think I could stand to lose fifteen pounds. Anyhow, best of luck to you. -Vicki
                Blessings and Hope

                Current Meds.
                OFF MY MEDS
                Vivelle Dot: .10 changed every 72 hours
                Compoounded Progesterone 25mg/night

                Current Supplements
                Hydroeye: 2 pills AM

                Diagnosed
                1995: Endometriosis
                1998: Interstitial Cystitis
                2006: Bladder Endometriosis, Total Hysterectomy and Bowel Re-Section
                2008: Removal of Ovarian Remnant and Endometrial Cyst That was Obstructing Ureter
                2012: Laparoscopic Removal of Adhesions and Staples

                Comment

                • #9
                  Thanks

                  Thanks everyone for your post. I started taking it on monday this week. So far so good. I have not had stomach problems or headahces. I hoping with the instills, diet and the meds, I will get my IC under control. I have been lucky so far, I have a great doctor.

                  Thanks so much...
                  Meds on now:

                  dextro 10mg

                  5000mg Vitamin D- when tested, I was sooo low.
                  Compound Hormones- Had hysterectomy when 24, ovaries out 37

                  At night:


                  4mg Zanaflex- Fibro & PFD
                  plendil- Raynalds

                  I have Fibro, IC, IBS, PFD, Raynauds.

                  Tried:

                  Past Meds
                  Lexpro- changed to Cymbalta for better pain relief –off both
                  Ultram – three times a day. Helped , I was tired of always being so tired.
                  Elmiron-took for a year-
                  Topamax-Did not need anymore since on dextro.
                  Atarax- did not need anymore

                  Pictures: Hubby & Me, Ozzy, My three Sons!!
                  What a proud Mother I am!!



                  .

                  Comment

                  • #10
                    Elmiron

                    I have been taking Elmiron since my diagnosis Oct-2003 @ 2 pills in the a.m. and 2 pills in the p.m. It's been great, no side effects and as of Jan 07, my bladder has actually increased in capacity.

                    I hope only great results for you as well!

                    Comment

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