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  • theories, anyone?

    The literature and the medical world at large seems to indicate that Elmiron works for only 1/3 of the people who take it. I don't get it! Why, if the bladder lining is damaged and you take something to coat or repair it, doesn't it work for more people? The only thing I can figure out is that the ones that it doesn't work for have another cause for their bladder symptoms, or maybe another overriding cause in addition to the lining being damaged.

    Has anyone else given this some thought, or have some ideas?

    Also, for those for whom Elmiron does not work, have you found something that does?

    Thanks for any responses!

    Diana.

  • #2
    It's one of the puzzles of IC. I can't take elmiron due to side effects, but I have found relief with hydrodistention and DMSO instillations, along with controlling my diet.

    Donna
    Stay safe

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    • #3
      Diana,
      Isn't this just a wonderful illness. Without a real cause defined it is nothing but guesswork, like Donna said, a puzzle. I do get benefit from the Elmiron, but I think the biggest help for me is the Hydroxyzine, and diet.

      Jolene
      Jolene

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      • #4
        Hi,I have not had Hydroxyzine, but I do know the diet is the key thing for me..but it's so hard to keep to it...all the things I really do like are no's on it...but if I really really stick to it...I can get symptom free..but it's a lot of work, much more cooking...and no convience foods.
        BobbieB

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        • #5
          I have asked myself that same question! I read some transcripts of an interview with an IC doctor and he said that with his patients he sees like 90% improve with elmiron but my doctor told me it doesn't help that big of a percentage, so who knows? Good luck!
          grouphug Melissa

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          • #6
            I believe it could be a number of reasons....one that you didn't mention being that if your bladder is already severely dammaged it may take a lot longer to notice the difference and people in that possition don't give it that long because they are so desperate for help.

            IC is a quite a mystery
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            Katrina


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            • #7
              I thought about this question before and remembered reading a transcript talking about the damaged bladder wall was just one sign of IC. I guess there must be some other causes behind the scene.

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              • #8
                Good question. I am one of the lucky ones....Elmiron worked extremely well and gave me my life back.

                I believe that the term "interstitial cystitis" is an umbrella term that groups many different symptoms for which there is no definitive cure or etiology. I think with futher research, scientists will discover perhaps that those diagnosed with IC will fall into smaller categories that hopefully will benefit from more specific medications or treatments. Why do some ICers respond to a treatment, or certain trigger foods, or experience different IC symptoms, and others do not? I think at this point IC is too broad of a term, grouping too many different people with different symptoms and with further research, they will discover that IC is in fact an umbrella of many different sub-groups of the disease.

                Take care,
                Alexa
                My story of healing and hope http://www.ic-network.com/patientstories/alexa.html

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                • #9
                  Hello,
                  I think the statistics are actually a bit better than the 1/3. I think (don't remember where I read it or I'd give you the site) that 1/3 are helped after 3 months on Elmiron but the stats go up to 62% that are helped by 6-9 months of taking it...
                  Kadi

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                  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.
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                  • #10
                    Thank you all for your thoughtful responses!

                    I have been off Elmiron for over a week now (stopped it 1 week prior to a minor surgery) and just don't know if I want to go back to it or not. I took it for 13 months and don't feel any better at all. Part of me says keep taking it because it may be helping but there is more treatment needed in addition; part of me just wants to quit.

                    Anyway, thanks again for replies!

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                    • #11
                      In my case my hydro showed the petechial hemorrhages and inflammmation but my bladder showed normal capacity. I had frequency and chronic pressure. DMSO worked for awhile and I tried elmiron for a year but it did not work for me. I have been on elavil for 5 years now and have been in complete remission. It must have something to do with the nerve endings in my case. It is so hard to understand because there seems to be no common thread. I think there is some kind of test they can do to determine if you have a "leaky" bladder and, if you do, the elmiron may help.

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                      • #12
                        My cysto/hydro showed the bleeding as well as a tiny bladder capacity. I think Elmiron would've worked for me had my IC been caught sooner, when symptoms first appeared. IC is quite the mystery.
                        Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

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                        • #13
                          I am an individual who gets relief from a multi-approach. I am helped by Elmiron, Cystistat instills, and hydros. Diet about all else is my first line of defense.
                          Liz

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