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why are some afraid to start elmiron

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  • #16
    Stick with it thats all I can say! Between this and the diet, hydros and some other medicines can't really say I'm in remission-- was many years ago, but I'm living. After taking this for so long, I still miss the afternoon dosage alot.

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    • #17
      I was scared to take it at first too, after reading all the posts of others that were scared. But I eventually did and 15 months later I can't believe how much better I am. I was just thinking about it this morning, how much I really owe my current state of well-being to Elmiron and how glad I was to have not been too afraid to take it. I never lost hair, though I was paranoid about it for the first 6 months, and had mild headaches, but I take it out of the capsule and never had a problem since. I also sometimes miss the afternoon dose, and it still works fine for me.
      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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      • #18
        I wonder why the capsule causes so much aggravation? I have had a painful stomach all day today and I think it is the capsule. I am going to start taking it without the capsule to see if this makes a difference. But what is in the capsule to give us so many problems. Anyone know?

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        • #19
          See my post in the Elmiron/headache thread about the capsule (my theory).
          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

          Comment


          • #20
            What scares me is the percentage of people who it doesn't work for - and the amount of time that it takes to start working. It's really a coin toss on a lot of things, it works for some - not for others, some have hair loss while others have none. It's scary, you never know if you will be one of the lucky or unlucky.
            I am Jenny.
            "Karma is affiliated with the Neopagan law of return or Threefold Law, the idea that the beneficial or harmful effects one has on the world will return to oneself."

            Dx:
            -UTI's and Kidney infections: Since 6 months of age
            -HPV: November 2005
            -Advance high-grade pre-cancer cells found in cervix: January 2006
            -LEEP procedure: January 2006
            -IC: January 2007

            Medications (Began Treatment 3/27/07):
            -Elmiron 100mg 3 x per day
            -Elavil 25 mg
            -Hydroxyzine HCL 10mg
            -Sanctura 20 mg 2 X per day (added 07/24/07)

            Weekly Instillations @ Doctor (Starting 07/31/07 instillations will be performed by self at home - Wish me luck!)
            -20cc Lidocaine 2% Plain
            -2cc Sodium Bicarbonate 8.4%
            -1cc Heparin (10,000 units/cc)

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            • #21
              I actually have been taking elmiron for about 4 weeks, and I cant already tell a HUGE difference, actually I am in remission with elmiron and I couldnt be happier. I cant believe it worked so soon and so well

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              • #22
                I just started taking elmiron a week ago...so far, knock on wood, I've not had any side affects. I'm crossing my fingers and toes that this will put me back in remission.

                I've not had a problem with the dosage timing, I take one in the morning, one about 3 PM, and another at bedtime. If anything, it's good for my diet because I'm not snacking. I've even lost a few pounds!
                mom_in_ma

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