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  • #1

    Elmiron questions

    So, I finally started elmiron today. I wish I would have started 4 years ago when it was first suggested. the sound it maybe taking 6 months to work or more didnt sound good to me. I need to work on my being impatient. If I started 4 years ago when I started having symptoms. I probaly would be in much better shape right now. My questions are

    Do you have to take this and the IC diet for this to work? Dr didnt mention this. I dont have too many food sensitivities maybe 5 major ones I try to avoid

    It says to take 1 tablet 3times daily can it be taken 2 in the morning and 1 in the evening for example? or does it need to be spread out through the day.

    I plan to get an appointment with DR Parsons in san diego depending on my progress. so far there are no more appts for new patients till April 2011
    Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

    I have moderate-severe IC

    Currently stopped taking all medications due to pregnancy
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  • #2
    call

    Call the nurse about your meds, every icer is different as far as the ic diet.
    I have to stick to the diet I tried 2 cups of coffee and am in a flare, not worth the pain.
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    • #3
      Usually if they have you take it in two doses, one in the morning, one at night, then you take 400mg - 200mg in the morning, 200mg at night. But of course you would have to check with your doc about that.
      Update! Feeling much better these days and no longer on any meds!

      Pelvic pain began July 2008. Urinary frequency began in November of 2008. IC Doctor says I'm one of the worst frequency patients he has had.

      Things that helped me the most: IC Diet, Elavil (30mg), Elmiron since June '09 (500mg/day).

      Previously tried and quit: one series of six instillations, Neurontin, Ditropan, Oxytrol, electric stimulation to the pelvic floor, Desert Harvest Aloe, Cystoprotek and Flomax, Hydroxyzine (50mg), Alesse Birth control (this helped my period flares when my symptoms used to be bad), PTNS (I think this helped).

      [/COLOR][/SIZE][/FONT]

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      • #4
        I believe the recommended dosage is three times a day. You should talk with your doctor if you wish to vary from the usual schedule.

        Many, if not most ICers do need to stick with their IC diets even when being helped by elmiron.

        Donna
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

        Have you checked the ICN Shop?
        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

        Patient Help: http://www.ic-network.com/patientlinks.html

        Sub-types https://www.ic-network.com/five-pote...markably-well/

        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

        I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.         [3MG]

        Anyone who says something is foolproof hasn't met a determined fool

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        • #5
          Hi Needsrelief,

          I've seen Dr. Parsons and he says it's okay to take it split in two doses daily instead of three...

          Jill
          "Where there is hope there can be faith. Where there is faith, miracles can occur."

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          • #6
            thanks for your responses. i hope that I have a success story soon.
            Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

            I have moderate-severe IC

            Currently stopped taking all medications due to pregnancy

            Comment

            • #7
              I wish you a lot of luck! My uro put me on it when I was first diagnosed about 9 months ago. Between that and the diet I've gotten to the point where most days I don't feel like I have IC. I know a lot of people are put off of trying it, but I hope it ends up helping you.

              I will say that I think the Elmiron has helped me widen my dietary choices a bit. I absolutely agree that you should stick to the diet while you give it a chance to work. But I'm now able to enjoy a small glass of white wine or low-acid decaf once in a while whereas before I couldn't.
              Lori

              40 y.o. mom, wife and marketing manager

              "Il faut manger pour vivre, et non pas vivre pour manger." -- Moliere ("One should eat to live, not live to eat.")

              IC symptoms began Feb 2010; diagnosed Mar 2010

              Treatments:

              Oral
              Elmiron 3x day; Elavil 25 mg/day; Prelief (when I remember!); Benadryl and Prosed DS as needed for flares

              Other
              Acupuncture 2x/month; yoga; IC Diet; meditation and breathing exercises for stress; heating pad for flares

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              • #8
                thanks wagamama. I should have started it when I was first diagnosed but I thought since it wasnt as bad as first I could deal with it without meds. slowly but surely I have severe pelvic pain now. along with my other symptoms. its so bad its making me dizzy. I think for the time being Im going to see a new uro for bladder installations also. I dont have too many food sensitivites really the top ones which are tomato sauce,coffee/tea,citrus fruits/drinks,very spicy foods,and alcohol. those are the ones when I eat I feel the results after wards. other than that I still have symptoms. I have PFD also so that maybe the reason.
                Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

                I have moderate-severe IC

                Currently stopped taking all medications due to pregnancy

                Comment

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