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  • Has anyone's eye damage stopped progressing

    Has anyone had pigmentary maculopathy stop progressing after being off the medication for a period of time? I just had followup OCT scan and FAF and OCT was stable but FAF showed more pigmentary white spots and I am having more vision issues. I have been off it now for 2 years and my retina specialist was surprised at how the damage is progressing.

  • #2
    Jill has set up an information center about Elmiron and eye damage. The post title is New Elmiron Eye Disease Resource Center --- I encourage you to check there .


    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
      Originally posted by ICNDonna View Post
      Jill has set up an information center about Elmiron and eye damage. The post title is New Elmiron Eye Disease Resource Center --- I encourage you to check there .


      Donna

      Yeah. I saw it. Thanks. Not much news about it sadly, especially good or encouraging news.

      Comment


      • #4
        I know --- and it's probably going to take time to learn about the ongoing effects. I wish I could have answers --- the only suggestion I have is to be sure to have regular eye exams.

        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 know this is an old post but thought I would reply now that some time has gone by. I stopped Elmiron as soon as Jill posted the findings from The Emory Eye Clinic in 2018. ( I had taken Elmiron for over 9 years with great success.) I had been dealing with visual problem for over a year at that time not being able to find a reason behind the retinal changes. I went from one specialist to another with no answers. My vision has continued to decrease to where I am no longer driving and I need to be very careful judging distances as my depth perception is very limited in some lighting. After being seen for many years at the Kellogg Eye Center at the University of Michigan I’ve recently been told the pigmentary changes may continue causing further loss of vision or it could stop at any time. My doctor has diagnosed me with Pigmentary Maculopathy caused by Elmiron toxicity. Please take this seriously. If you are taking Elmiron know that your body could at any time decide it’s had enough and attack your eyes.
          Sara-age 58- Happily Married-Mother of 3
          Diagnosed-Nov. 2009
          Elmiron 200mg morning and bedtime
          Gabapentin-pain management and sleep aid
          Probiotics-Digestive Advantage Colon Health-IBS
          Atarax-antihistamine 25 mg at bedtime
          Bi-Est/Prog cream-Bio-Identical Hormone Replacement
          Flonase 50 mg.-seasonal allergies
          Fish Oil-general health
          Vitamin D3
          Vitamin A
          Probiotic

          Comment


          • #6
            I'm so sorry you are going through this. Your sharing will help others make elmiron decisions. Thank you!

            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


            • #7
              Originally posted by MommaD View Post
              I know this is an old post but thought I would reply now that some time has gone by. I stopped Elmiron as soon as Jill posted the findings from The Emory Eye Clinic in 2018. ( I had taken Elmiron for over 9 years with great success.) I had been dealing with visual problem for over a year at that time not being able to find a reason behind the retinal changes. I went from one specialist to another with no answers. My vision has continued to decrease to where I am no longer driving and I need to be very careful judging distances as my depth perception is very limited in some lighting. After being seen for many years at the Kellogg Eye Center at the University of Michigan I’ve recently been told the pigmentary changes may continue causing further loss of vision or it could stop at any time. My doctor has diagnosed me with Pigmentary Maculopathy caused by Elmiron toxicity. Please take this seriously. If you are taking Elmiron know that your body could at any time decide it’s had enough and attack your eyes.
              Are they doing any treatment for it?
              ~Ashley

              Comment


              • #8
                There is no treatment as of right now. My local doctor is monitoring me and watching for any changes. My doctor at the University of Michigan will notify me if anything new becomes available.
                Sara-age 58- Happily Married-Mother of 3
                Diagnosed-Nov. 2009
                Elmiron 200mg morning and bedtime
                Gabapentin-pain management and sleep aid
                Probiotics-Digestive Advantage Colon Health-IBS
                Atarax-antihistamine 25 mg at bedtime
                Bi-Est/Prog cream-Bio-Identical Hormone Replacement
                Flonase 50 mg.-seasonal allergies
                Fish Oil-general health
                Vitamin D3
                Vitamin A
                Probiotic

                Comment


                • #9
                  If you hear anything new --- please post the information.


                  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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