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New study on elmiron eye damage

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  • New study on elmiron eye damage

    Not good news for those of us who have eye damage from elmiron. New study below

  • #2
    This is absolutely devastating. At this point, I have to wonder if it should just be pulled from the market. What do you think? Thanks for sharing.

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    • #3
      It is devastating, Jill. I have eye damage and am so upset at this news as my retina specialist thought it would stabilize after being off it for 2 years. I have been off it now for just over 1.5 years. I wish they would pull it. Too late for me but not others. I have a lot of anxiety and depression over this.


      • #4
        I'm actually a little surprised that it hasn't been removed from the market. It's so sad --- so many were helped and we were so enthusiastic about it. I hope you're at least at the stable point now.

        Warm hugs,
        Stay safe

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        • #5
          According to this study, it never stabilizes. Everyone had worsening up to 5 years after stopping it. I am so devastated over this. I keep hoping for good news and it doesn't happen.


          • #6
            I have a faf test set up for Monday as I have very blurry vision For hours in a day. I’ve been on elm iron for almost 10 years, fingers crossed!
            Have had symptoms since March 2010
            Have tried: Ditropan, Detrol, Aloe Vera, Uribel, Myrbetriq, Vesicare, others I can't remember
            Diagnosed Jan 2016, with cysto/hydro,(no hunners) worked great for 4 months, another hydro in July
            I just started drinking Aloe again and taking hemp oil which is getting great reviews!!
            25mg hydroxyzine before bed,
            25(was on 50) mg Elavil before bed, now on 400mg Elmiron, since about Sept.
            valium suppositories when needed
            Ambien before bed
            for a CURE,


            • #7
              Let me know how it goes. Good luck


              • #8
                I am in Canada.. I am not sure if it is still on the market here.. I took it for about a year..If it is that bad it should be taken off the market.. We have seen and add on tv about class actions taken if you have taken Elmiron and have developed eye problems.. I am thinking it was an American channel. How horrible for those who are affected.
                God brought me to it, He will bring me through it!!!

                Diagnosed 2003
                by cysto/hydro
                Elmiron took almost a year- made me sick, caused diarrhea
                Pyridium -Made me sick
                Detrol and Ditropan, Toviaz and Mrrbetriq- caused constipation and head ache.
                Tried DMSO instill- had 5 out of 6
                Started Oxytrol Patch-stopped using them after 3 months-- skin was getting irritated
                Cysto/hydro April 6th 2011-- on expansion only hold one cup
                IBS/ IC
                High blood pressure meds and Crestor
                Metformin (prediabetic)
                Sinequan (depression)


                • #9
                  I am sorry for anyone experiencing vision issues. However, according to what I have read ( and correct me if I am mistaken) Elmiron's effect on the eyes is about 20-25% of users. I have been on Elmiron for 16 years now and it has been my life saver for IC. When I first read about the study last year I immediately had my eyes examined. No issues. I just went for another yearly test a few weeks ago and so far so good. Macula & retina look fine. I will continue to go every 6 months for an eye exam but can't imagine going back to what my life was like when I was first diagnosed. Elmiron really has given me a quality of life that I did not have before I started taking it. Anyone have positive things to say about it? I would appreciate your comments. Thanks!


                  • #10
                    At least 1 out of 4 people are being found to have eye damage. Make sure you are having routine OCT scans and/or FAF as regular eye exam will not find the damage.