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Any Update on Elmiron/Macular Studies?

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  • #16
    Be sure to let us know how you do --- it can help others with IC who want to stop Elmiron.


    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

    • #17
      Originally posted by cynb2003 View Post
      Well, after trying to figure out what to do next for a wean off Elmiron journey, I've just purchased Bladder Build to start trying while still using Elmiron and I am hoping a fantastic outcome!
      Please keep us update. I was on elmiron over 10 years and tried to stop taking it and now my IC is back.

      Comment

      • #18
        Originally posted by Lan13 View Post

        Please keep us update. I was on elmiron over 10 years and tried to stop taking it and now my IC is back.
        Have you talked with your doctor about reducing your dose? I suggest you have a look at products available in the ICN Shop and consider transitioning to some of those; be sure to keep your doctor aware.

        Warm hugs,
        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

        • #19
          Originally posted by amyc16 View Post
          Just went to my ophthalmologist and after several tests he determined I do have some retinal maculopathy. I am scheduled to see a retina specialist in 2 weeks. Call my Urologist and he said it was a preliminary study so I should not worry yet. That didn't seem like a very helpful answer since I already have some damage. What seems most helpful if I stop taking Elmiron. CystoRenew?
          How is your vision now? Has it stabilized or worsened since being off it? How long have you been off it? I have pigmentary maculopathy from elmiron and have been off it now close to 2 years. I go for another OCT scan in November. I was found to have damage the beginning of January 2020 after I was off it for a year. New stud shows it continues to progress for at least 10 years after stopping it.

          Comment

          • #20
            Originally posted by Chazari View Post
            Has there been any update on studies showing the link between Elmiron and Macular Degeneration? My eyes are okay (for now) and I have been taking Elmiron for 20 years. I've reduced my dose to 1 pill per day, 5 days a week in an abundance of caution. Thanks.
            In some people damage is found years after stopping it. Mine was found after being off it for a year. New study shows damage can continue to progress for at least 10 years after stopping it. Every one they have found damage in has taken elmiron.

            Comment

            • #21
              Originally posted by ICNDonna View Post

              Have you talked with your doctor about reducing your dose? I suggest you have a look at products available in the ICN Shop and consider transitioning to some of those; be sure to keep your doctor aware.

              Warm hugs,
              Donna
              yes, I did talk to my doctor about reducing my dose to 200 mg a day and i reduced to 100 mg almost a year and stopped completely about 3 months then my symptom is back. I just went to have my eyes exam yesterday and came out normal. still concern about the side effect of elmiron though

              Comment

              • #22
                Originally posted by HollyS View Post

                How is your vision now? Has it stabilized or worsened since being off it? How long have you been off it? I have pigmentary maculopathy from elmiron and have been off it now close to 2 years. I go for another OCT scan in November. I was found to have damage the beginning of January 2020 after I was off it for a year. New stud shows it continues to progress for at least 10 years after stopping it.
                What meds are you taking after you got off the elmiron?

                Comment

                • #23
                  Originally posted by Lan13 View Post
                  What meds are you taking after you got off the elmiron?
                  Meds????? Nothing. I am not trusting any medications. I was told elmiron was safe and now i am going blind.

                  Comment

                  • #24
                    Originally posted by HollyS View Post

                    Meds????? Nothing. I am not trusting any medications. I was told elmiron was safe and now i am going blind.
                    I'm so sorry you are going through this. My husband had macular degeneration --- I hope yours will be as slow growing as his was. He was still reading books when he passed away and it was at least ten years after his eye problem was diagnosed.

                    You'll want to be sure to have regular eye exams and always ask if it has progressed --- and if so, how much.

                    Sending gentle hugs,
                    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

                    • #25
                      Originally posted by ICNDonna View Post

                      I'm so sorry you are going through this. My husband had macular degeneration --- I hope yours will be as slow growing as his was. He was still reading books when he passed away and it was at least ten years after his eye problem was diagnosed.

                      You'll want to be sure to have regular eye exams and always ask if it has progressed --- and if so, how much.

                      Sending gentle hugs,
                      Donna
                      I don't have macular degeneration. I have pigmentary maculopathy. My retina specialist said it is a different diagnosis and pathway. What helps with MD will not help with pigmentary maculopathy from what specialist told me.

                      Comment

                      • #26
                        Originally posted by HollyS View Post

                        Meds????? Nothing. I am not trusting any medications. I was told elmiron was safe and now i am going blind.
                        I am so sorry, Hope the doctors can help you with your eyes.
                        Hugs

                        Comment

                        • #27
                          Originally posted by Lan13 View Post

                          I am so sorry, Hope the doctors can help you with your eyes.
                          Hugs
                          Sad thing is nothing can be done to reverse it or stop damage from advancing. It continues to do more and more damage for years and years after stopping it. Many are already blind from it.

                          Comment

                          • #28
                            Hello all, a lot has been going on and sorry for delay to tell you how my experience has been going. I started the Bladder Builder 9/24/20 and I am happy to report that's been going great. I am weaning down off the Elmiron (total 10 months now) and this month I will be done with Elmiron!! I am taking it every 3rd day now this month just to say I didn't go cold turkey, even though I've been weaning and weaning all this time. Made it a fun game with a calendar for myself to "Elmiron Freedom Calendar". OK....kinda not so good news. I had my eyes check on October 20th and I do show some retina changes. UGGHHH. Luckily the specialist I went to was highly educated on Elmiron. He said "You and I are now going to be best friends for this journey...I want to check you every 2-3 months for the next 2 years" So, I am going back in December. He agreed fully to get off that med. Sadly, I wish my Urologist felt the same...he felt that is was a FDA drug and he would like to support that....or bladder instillations. I laughed FDA THIS is what I said...that's gotten me in the mess I am now. BUT...I am thankful that I am doing well....THANKFUL that I have the Bladder Builder too! I'm hoping that my eyes don't progress!!! I'm need to stay optimistic!

                            Comment

                            • #29
                              Originally posted by cynb2003 View Post
                              Well, after trying to figure out what to do next for a wean off Elmiron journey, I've just purchased Bladder Build to start trying while still using Elmiron and I am hoping a fantastic outcome!
                              Be sure to let us know how you do on the Bladder Build.

                              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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