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Who has been helped by Elmiron?

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  • #16

    I finally gave in and started it about two weeks ago. The doctor told me that it was worth it to try it along with the other combos he is trying. (Will email you soon and fill you in). I will keep you posted as time progresses. It is expensive - the copay is outrageous compared to my usual.

    The only thing I have trouble with is taking it before I eat - an hour before or two hours after but I am slowly working out a system for that.



    • #17
      I did!

      Elmiron has really helped me a lot! I noticed a difference about 2 weeks after I started taking it. It definitely has effected my stomach but I can handle that much better than an IC flare! I have been on it for almost 2 years and have only had 2 flares since then. It also dramatically improved the frequency and urgency I had. I am going to my GYN to see if I can stop it since I am going to TTC. I am hoping I don't fee too bad. But, Elmiron has been absolutely great and absolutely works!
      Rochester, NY :woohoo:


      • #18
        Thanks Sara,
        I started it last week.. Keeping my fingers crossed it works for me too

        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

        Link to Patient Handbook:

        Diet Reference Sheet:

        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

        Meds I have Tried:
        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
        Lexapro< Bad reaction to this med!
        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

        Dx With IC in Nov 2006 with Hydro/Cysto
        Hydro/Cysto Caused Bladder to Rupture.

        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

        ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


        • #19
          The Elmiron really helped me a lot (but it took a few months to work). I was on it for about a year but had to stop because I develpoed bleeding problems. But even after I went off it I have been doing better than when I first develpoed IC.

          Medical "Issues":
          Tachycardia(resting rate is 125-130 )
          Tramadol-as needed (IC)-50mg
          Elmiron 200mg twice a day
          Levsin .125mg 1-2 pills 4 times a day


          • #20
            Elmiron has been my lifesaver! I joined the IC boards when I was diagnosed in April 2004. I have been on Elmiron for 3 yrs. now (plus atarax) and it has helped me immensely. I will say that in the beginning I was very discouraged as I didn't even begin to feel the effects of it for close to a year. Somewhere around the 9 month mark I had better days, but The full year was when I noticed a HUGE difference. I visit the boards now and then; not as frequently as I used to because I hardly ever think about my IC that much. I am still careful with my diet. I have added many foods back in, including occasional (but sparse) tomatoe sauce. Citrus, however, will still do a number on me. But if you are a new user of elmiron, I would encourage you to stay with it for at least a year. I know it seems like a long time, but it was well worth the wait for me. Good luck! Liz