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How long did it take your symptoms to improve with rescue instillations?

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  • #16
    Re: How long did it take your symptoms to improve with rescue instillations?

    Hello. I just finished week 9 of dmso treatment. It has all the other medicine in it that have neen named plus dmso. They seem to help a bit but not for 3 days after i got them because cath would irritate. But then it was time for another one. Now i go every 3 month for 3 weeks. I feel it helps nut also i am on month 7 of elmiron so not sure what is what. I am not all better but pain and frequency has reduced so much since july. Still habe bad days but nothing like they were and good days are still bothersome but also improved

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    • #17
      Re: How long did it take your symptoms to improve with rescue instillations?

      Lo-Frick catheters saved my urethra!!! I could not tolerate the other ones AT ALL!!! They are a dream!! I didn't get help or relief at all from rescue instills. No matter how often I did them.....we did daily for several months. They burned the whole time they were in, and I think made it worse. I am in the US and legally get Uracyst from Canada. They took a very long time to help, and I wish they worked better than they do. But I will take any help!! And they do help!!! I have to do them bi-weekly. The 2 week mark is when my symptoms get more sever. I would do them weekly if I had to though.
      Current: -pelvic floor therapy, -weekly uracyst instills

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      • #18
        Re: How long did it take your symptoms to improve with rescue instillations?

        DMSO is not suggested any more, esp in Europe, becayse it can cause serious unrepairable damage. Better try something else.
        Also, Uracyst is very strong, in Europe it is recommended every 4-5 weeks, otherwise it burns like hell, when made too often. Felt it myself.

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        • #19
          Re: How long did it take your symptoms to improve with rescue instillations?

          I'm not sure why Europe's recommdation would be different. But Uracyst manufaturer in Canada recommends one treatment weekly for 6 weeks and then one treatment monthly. Uracyst is very soothing and coating.
          Current: -pelvic floor therapy, -weekly uracyst instills

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          • #20
            Re: How long did it take your symptoms to improve with rescue instillations?

            I'm very interested in Uracyst. If there is anyway you can tell me how to get Uracyst in usa? Feel free to email me:
            [email protected]

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            • #21
              Re: How long did it take your symptoms to improve with rescue instillations?

              Hi, you are the only other person I have heard of having Cystitat instillations, I am so glad to hear your story. I live in Ireland and have had 11 instillations. It took 6 weekly treatments before I saw any improvement and then I had 10 more. But after three weeks without instillations the pain returned, had another treatment but it did not work. I am much better in the day time but at night I am up four or five times with pain before and after peeing. Now my doctor says I need not have any more as the treatment seems to be working which is true in the day time. I am so worried that I am just going to get worse and worse, the pain at night is so bad at times that I take a Tramadol.

              Good to hear you are doing well, mind yourself.

              Deewee

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              • #22
                Re: How long did it take your symptoms to improve with rescue instillations?

                I just add one more time: yes, recommendation for Uracyst/Cystistat/Gepan/Uropol is first every 6 weeks and then every some weeks. And they really help, as some people wrote here! But some bladders are more sensitive and they can be too strong. Then they should be made, like, every 4-6 weeks, to let bladder "get over it" and heal between. I guess the important question of decision is, if, the instill is INSIDE, does it feel painfree and no frequency?? Also, if you read instructions, it should be kept inside "as long as possible". I keep 4-7 hours. YES! It is possible, when it is inside, I feel I never need to pee any more in my life. So, I would say, if you have the same feeling during it is inside, you personally should continue and wait. If it only hurts inside, lets say, 10-12 times in a eow, it is possible it is not really for you. But for some people here one day without pain is already a gift, isnt it???

                So, please do not give up, just leave more time between, if you have a doubt. And, very important: please try it without any gel and so on, if it burns, it CAN be lidocaine or something else, that ruins good effect. It burned 1,5 years like hell every time, until there came new nurse and she said, gel is not needed. Guess what? Never burned any more!!!

                If you want to buy from Canada, just write to some pharmacy there, contact that person up here who said he gets it from Canada legally. It is so worth it! (only takes long time.)

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                • #23
                  Re: How long did it take your symptoms to improve with rescue instillations?

                  Hi. If you lost hope after reading this thread, please read the many success and remission stories. I just had a follow up cystoscope and my glomerulations are gone and inflammation was very minimal. I would view that as bladder healing. I follow the IC diet, take hydroxyzine, imipramine, and low dose valium for tight pelvic floor muscles, Pelvic Floor therapy helps a bunch! There are lots of IC patients who have never had bladder instillations and doing great and barely think about their bladders any longer. My urogyn has never told me that my bladder will shrink without instillations. They are noted as an AUA second line treatment for IC, so if you feel better with first line treatments, you don't even have to ever get an instillation. Don't despair.
                  Cheers, Cheryl

                  Current Treatments:
                  IC Diet
                  25mg Atarax
                  Vaginal Valium (as needed)
                  Pelvic Floor Therapy (1x/week)
                  Quarterly bladder instillations

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