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Finding Relief with Cytotec

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  • #61
    Lori, I'm so sorry to hear you haven't improved. Aren't there things you could revisit to use in combination with the cytotec? So many people are reporting success with so many different things, and new things too, like enablex, vesicare, lyrica, cymalta -- or easily tolerated things like aloe, gotu kola, Urocit-K, cystoprotek.

    I hope you will keep trying everything now that you found *some* benefit from the cytotec.

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    • #62
      Hi, Baba Yaga, thank you so much....

      I've tried the natural remedies you've mentioned and every last one of them made my bladder pain and symptoms worse. Same with the other meds you mentioned - I've tried Ditropan, Neurontin, and Cymbalta - (same basic drugs that you mentioned) and all of them made my bladder pain and symptoms way worse. My bladder is just hypersensitive to basically every medication out there. Even Elmiron made my bladder symptoms worse. My bladder just can not handle meds. Pain pills work pretty well, but they irritate my bladder at the same time they are handling the pain, so I end up with worse rebound pain whenever I take a pain pill.

      It's time for me to try Cyclosporine-A. Cyclosporine-A eye drops worked great for the inflammation in my eyes - maybe it will work for the inflammation in my bladder.

      I have some reason to believe that my IC is in conjunction (or maybe because of) Sjogren's syndrome. I've had a positive ANA test, positive Schirmer's, I have dry mouth, and got arthritis symptoms really bad when the IC hit. All of those things are signs of Sjogren's. Including the IC. And the treatment for that is Cyclosporine-A. So it seems like the right drug for me to try. I've read up on it and it's been used on many patients for disease like Crohn's disease, etc. In low doses it seems fairly safe, and the studies I've read made it seem effective for IC.

      Wish me luck! Mostly I'm worried my kidneys will not be healthy enough or my blood pressure will be too high, to allow the doctor to prescribe me the Cyclosporine-A. I might not even get to try it.

      Blessings,
      Lori

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      • #63
        Lori, I hope The C-A works for you, and quickly.

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        • #64
          Thank you - I've been so frustrated that all the medicines that have helped others, have caused increased bladder irritation in me. It's like my bladder is just too far gone or something.

          Blessings,
          Lori

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          • #65
            Good luck, Lori! We're all cheering for you! Keep us posted.

            Amy (Mrs. B)

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            • #66
              Thank you so much, Amy. Hey, if nothing else, at least I'm kind of a good guinea pig for other IC'ers, because I'm willing to try any and every treatment, that's for sure!

              Blessings,
              Lori

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              • #67
                Good luck Lori. Are you stopping the cytotec right away? Sounds like the cyclorsporine - A might be right for you if you have an over active immune system. My aunt long ago had lupus and she took enormous amounts of steriods then, as that is all they knew then. I wonder if she had celiac which I understand some lupus do. I get some alternative newsletters that believe all autoimmune is being triggered by something external, atleast initially. Who knows. It would be so easy to cure if it was just eliminating something. My friend eliminated most grains and all her headaches and IBS went away. It's so hard to know what to do. Good luck. You are a champion. PV
                I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

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                • #68
                  Thank you so much, PV - I'm still taking the Cytotec because I think it's helping me somewhat, just not enough anymore for some reason. I will probably stop it if the doctor allows me to try the cyclosporine-A though, just because it makes sense to just use one medicine at a time to see which one is working.

                  Autoimmune diseases run rampant in my family, and I think I just got unlucky genes, I don't know. Sometimes I think that autoimmune diseases are more common among Scandanavians and I have some Swedish blood (grandfather was from Sweden)...I don't know, I have all these theories...

                  I'm really sad though that I can't get complete remission anymore from my Cytotec. I've had a couple of nights pain-free but most nights I need pain meds, and I just had a mini-flare with my period this time so I'm giving up....

                  I'm just so scared that my blood pressure and/or kidneys won't be good enough to let the doctor prescribe me the Cyclosporine-A. I'll feel a lot better after I get the tests done and he says "okay."

                  I'll let you guys know if I get the prescription (I should know by mid-May I think, the tests should come back by then and I should be able to get another appointment to discuss the test results) and what my results are.

                  Blessings,
                  Lori
                  P.S. I wonder how everyone else is doing on Cytotec?

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                  • #69
                    Just started Cytotec myself. Day 2, so we'll see how that goes.

                    By the way, how are you doing? I'd advise against using ibuprofen. I have a wacky hypothesis that some IC can either be caused or exacerbated by NSAID use (Motrin is ibuprofen) because it suppresses the expression of a hormone that helps repair the mucosal wall of the bladder.

                    Hope all is well.

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