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Why go from 3 Elmiron down to 2?

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  • Why go from 3 Elmiron down to 2?

    Why do some people go from 300 mg of Elmiron (3X per day), down to 200 mg (2X per day) or even 100 mg? I am on 3 Elmiron per day, and I wanted to know if I can eventually go lower. Thank you.

  • #2
    Well, I think that when people are feeling well that they want to take the lowest effective dose of meds. So, the 100 or 200 mgs would be a maintence dose, so to speak.
    mom_in_ma

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    • #3
      hair loss

      i went down from 3 to 1 for hair loss reasons
      i am now on 0
      waiting for hair loss to stop

      i am still ok
      i am taking desertharvest.com aloe vera
      in place of the aloe

      hair loss...and price
      my doc thinks i take 3 xday
      script is for 3xday
      if i take it 1xday

      that 1 month script...will last 3 months
      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
        I went from 3 down to 2 or 1 a day. I was feeling good and wanted to decrease my medication load to my body. I waited a year to decrease, though. If I am having a little flare I will raise it back to 3 a day until it is over.
        30 year old Mother, Midwife, Birth Doula, Herbalist, and Massage Therapist with sudden onset of IC approx. 2/16/05 (after a PAP smear and routine gynecological exam). I tried a HUGE list of natural and alternative treatments (including Cystoprotek, Desert Harvest Aloe, Aloe gel, Glucosamine/Chondroitin, L-Argenine, Quercitin/Bromelain, Marshmallow Root...etc) for the first 9 months of having IC, without much relief, until I finally researched and started Elmiron.

        My experience:
        ~Previously took Elmiron 100mg three times a day
        (9/29/05-7/06)
        ~Experimented with dosage (1-2 Elmiron a day recapped into a plain gelcap) and did well with occasional mild flares. (7/06-9/09)
        ~Stopped all together at the 1 year mark (9/29/06) for 10 days. Still felt good, with low-level symptoms.
        ~Decided to go back on it (10/16/06) to see if another year on it will bring me into full (zero symptoms) remission. Currently taking 1-2 pills a day, recapped into a plain gelcap.
        ~ 6/08...Tried to go off Elmiron again, had huge flare at the 3 week mark, went back on 100mg once a day for maintenance.
        -I went off Elmiron for 2 months due to pregnancy and had a complete relapse of IC symptoms to pre-diagnosis levels of pain/frequency. I then went back on Elmiron at 10-12 weeks, but was unable to take it further due to severe morning sickness. The 2nd/3rd trimesters were MUCH better IC-wise, and postpartum is the best I have felt in years. I am no longer on Elmiron for now.
        -20 month postpartum remission from 4/17/09 to 12/10/10.
        -Out of remission after a pap smear on 12/10/10. Pap smears are obviously the main IC trigger for me. Currently trying to cope with loss of the remission.

        Also doing:
        ~Sugar-free/gluten free and strict IC diet (With an emphasis on organic, alkaline and whole foods)
        ~Prenatal DHA/Fish oil supplement
        ~Vitamin D supplement
        ~Culturelle probiotic

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