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  • GAG layer supplements - I'm confused

    Hello
    I have had to come off Elmiron due to retinal damage and am desperately looking for supplements that have a similar effect. I must admit that I am rather confused with all the different options in the store here (Cystoprotek, Blader builder, Bladder rest etc..) I would really appreciate some first-hand recommendations as these supplements are expensive and I live in Europe so transport will add to the cost and I need to make sure I am purchasing something of high quality that has a real chance of helping me. I have been off Elmiron for almost 6 weeks and am already flaring :/. Many thanks for any info you can give me.

  • #2
    Bladder Rest seems to be helping me.

    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    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.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      Thank you for replying. What exactly made you choose Bladder rest rather than another supplement and have you tried any others?

      Comment


      • #4
        I honestly don't know --- I read that it was helping some others --- and some people were asking about it --- I decided to try it and haven't been sorry

        Donna.
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

        Have you checked the ICN Shop?
        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

        Patient Help: http://www.ic-network.com/patientlinks.html

        Sub-types https://www.ic-network.com/five-pote...markably-well/

        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

        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.
        [3MG]

        Anyone who says something is foolproof hasn't met a determined fool

        Comment


        • #5
          I would definitely try Cystoprotek. It is literally the only thing that has ever made any difference in my bladder symptoms (the main symptom for me has always been frequency). The Cystoprotek worked pretty quick too (within 3 weeks of taking it) and finally made it so I could sleep at night. I used to get up to wee 9 to 10 times a night. Now down to twice, sometimes only once a night. Not as great for daytime frequency as I would hope, but definitely better than nothing. I've been taking it for 6 years and couldn't function normally without it.
          Treatments I've tried:
          ALL the OAB meds (Detrol, Enablex, Vescicare, Sanctura, Toviax,, Myrbetriq, etc). They either didn't work at all, or gave me bad retention
          Tried PTNS but gave up after 5 sessions with no improvement and a $50 copay every visit...ouch!
          Elavil - Had very adverse reaction to Elavi 25mg
          Bovine Colostrum- saw no improvement in symptoms after 4 months
          Elmiron: Adverse reaction within 2 weeks, had to stop


          Current Tx:
          Cystoprotek : 6 to 8 Capsules daily, helps to a degree especially with nightime frequenc

          Comment


          • #6
            Originally posted by Amychristina View Post
            I would definitely try Cystoprotek. It is literally the only thing that has ever made any difference in my bladder symptoms (the main symptom for me has always been frequency). The Cystoprotek worked pretty quick too (within 3 weeks of taking it) and finally made it so I could sleep at night. I used to get up to wee 9 to 10 times a night. Now down to twice, sometimes only once a night. Not as great for daytime frequency as I would hope, but definitely better than nothing. I've been taking it for 6 years and couldn't function normally without it.
            That's great. Thank you for sharing.


            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

            Patient Help: http://www.ic-network.com/patientlinks.html

            Sub-types https://www.ic-network.com/five-pote...markably-well/

            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

            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.
            [3MG]

            Anyone who says something is foolproof hasn't met a determined fool

            Comment

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