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Who has been helped by Elmiron?

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  • liznazz
    replied
    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

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  • MerryBerryMoose
    replied
    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.

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  • leelee88
    replied
    Thanks Sara,
    I started it last week.. Keeping my fingers crossed it works for me too

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  • SJCdmb
    replied
    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!

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  • aprilmae
    replied
    Ronda,

    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.

    April

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  • traceann
    replied
    Hey leelee, if you are interested in the Cystoprotek, you should check out the Algonot site, there's lots of good information there, it helped me out in making my decision etc. And you can take it with any of your meds, it's like the in-stores OsteoBiflex stuff, same types of ingredients etc, but a much better formulation for use by the body and formulated just for bladders etc. Just go to www.algonot.com, there's boatloads of information on that supplement!!!! I also know my knees creak a lot less now a days, lmao!!

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  • leelee88
    replied
    Thanks Kim..

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  • vm
    replied
    It has helped me immensely over the last almost 6 years - in combination with my other meds. It is the big one that helps me, the others help with the smaller symptoms. I have zero side effects from it and it continues to help me. It's been a godsend.

    If you click on the link for my story below you can see what my symptoms were like. I don't have symptoms anymore, but it tells what they used to be like.

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  • Lynn15
    replied
    I was on elmiron, among other meds, for a year and a half. i have to say that i noticed no real improvement with the elmiron. i decided to stop taking it because it contributed to flare ups of my irritable bowel. i've found heparin instills to be helpful and i began taking glucosamine sulfate a few months ago and i think i am just starting to notice a difference. hope elmiron works for you. i think it is definitely worth it to try it...as you can see it helps many. just make sure you give it at least 6 months, as it tends to take a while to take effect.

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  • Roxie2007
    replied
    I can see a big difference in my IC symptoms! I have been on Elmiron since July 06 and Elavil since Dec. 06. Most of my days are pretty much pain free unless I eat something I shouldn't. Roxie

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  • petrie86
    replied
    I had the same symptoms... I stated elavil and elmiron in oct 06. I can see an improvement in my sypmtoms. I can work again, that says alot. I do take days off but not for a flare... for uti's b/c of the peeing ever 2 mins. Elmiron has helped me alot!!! I would deffinitly ask ur dr or gyn about starting it. What do you have to loose? I didn't loose any hair on Elmiron either. (knock on wood)

    Rachel

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  • leelee88
    replied
    Meme, Thats the exact feeling I have..
    I am going to GYN tomorrow going to ask her about putting me on it..Can you take it with other things like Cystoprotek or CystaQ?

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  • Katrina
    replied
    I raise my hand as one lucky enough to be greatly helped by Elmiron...alone it wouldn't have been enough but the difference it made was huge.

    I do think that a bladder coat of some kind is a big part of treatment so if you don't respond to Elmiron and aren't interested in rescue instillations or they didn't work for you....I would look into the alternatives like • Desert Harvest Aloe Vera
    • Licorice Root (Soothing and coating)
    • Quercetin (may reduce the effectiveness of some forms of estrogen)
    • Glucosamine Sulfate
    • Mullein (protecting)
    • Slippery Elm (coating, don’t take near Elmiron)
    I do think your doctor should know what your considering in alternatives but

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  • meme
    replied
    Frequency and urgency were my main symptoms, along with a burning/uncomfortable feeling in my urethra right after I'd void that would make me feel like I had to go again.

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  • traceann
    replied
    Hey girlie, I have to say that Elmiron in combo with my other meds really helped me out a lot. I now take Cystoprotek to keep up the good work that the Elmiron did, lol. I did however have to do the dump-the-med-into-a-bit-of-water thing due to horrid heartburn I was having. But once I started doing that, no more problems with hearburn!

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