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Concerned patient

I was diagnosed more than 10 years ago. I recently started having progressive symptoms. I now have very decreased vision in the inner part of 1/2 of my left eye. My ophthalmologist said it will keep increasing to possibly both of my eyes. How do you deal with this? I am very scared. What will my future be like?

  1. I can’t tell you what your future holds. I can tell you that a good retinal specialist is the best doctor to treat macular degeneration. It doesn’t sound like you have wet macular degeneration since you didn’t mention injections. Dry macular degeneration starts in the early stage and progresses over time. It’s important to know what stage and type macular degeneration you have. At last there is a treatment for advanced dry macular degeneration. Have you ever seen a retinal specialist for macular degeneration? Regards, Sharon Moore patient leader


    1. I have had wet macular degeneration that has impacted all central vision in one eye. The same as Community Membere7172b above, my wet is now somewhat stablized since it is now over 10 years from when it first occurred. The dry form, an aggressive form per my "good retinal specialist" I understand is not a cure all without inherent risks. Injections were recently approved by FDA. Test results are still coming in. As I understand it, there is a risk continuous injections procedure of: possibly turning into wet macula degeneration; infection and loss of the remaining limited vision I have. Also I have found out that our teaching University hospital doesn't even do the procedure due to possible insurance issues.
      What I think the inquirer wanted to know (and what I want to know) is other inherent risks that supplemental studies are discovering. Any information will be appreciated as we patients with dry macular degenertion try to navigate the troubled waters to make the best decision. Thank you.

      1. my retinal specialist told me in June he would only start me on Syfovre as a last resort. He cited the many potential side effects for his reluctance. He told me a second medication would soon be approved with less side effects. I assume he meant Izervay which is now available. I go back in November and will see what He recommends. He is very good and I will trust his judgement. This link is about izervay https://www.brightfocus.org/macular/news/second-geographic-atrophy-treatment-receives-fda-approval this is the latest info on Syfovre https://investors.apellis.com/news-releases/news-release-details/lancet-publishes-24-month-results-phase-3-studies-syfovrer. We each must weigh the possible benefits versus the risk with these new treatments. Regards, Sharon Moore patient leader

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