Syfovre
I am supposed to get my first Syfovre injection Monday when I go in for my Eyelea in the wet eye. I am concerned after reading some posts in the ARMD forum on Facebook. A number of Retina Specialists won't use it because it has caused inflammation in the eye which led to blindness. My research says it has happened only six times out of thousands of injections. It did not happen in the clinical trials. I know it is a small chance, but I am worried. I would love to wait and see what happens, but the thought of losing any more vision while waiting is scary, as well. I don't know what to do. ðŸ˜
it sounds as though you have done thorough research. I feel for you, because I may be in the same position as you some day and I don't know what I would do. My RS discussed Syfovre with me for the future. The main side effect she mentioned was the increased likelihood of the dry turning to wet, and then I would need two different injections in that eye. I wish you well in making your decision. Just know that we are thinking of you. Please let us know how you go. Warmly, Wendy, Patient Leader. 
I understand your dilemma. I saw my retinal specialist yesterday and he confirmed that I have mild GA in one eye and moderate in the other. I asked if I should start Syfovre. He did not recommend it at this time. He said it carried triple the risk of developing wet macular degeneration and could cause ischemia resulting in blindness. He did not rule it out in the future if I have further progression. He also said he thought we would have safer options in the future. So now I wait and see how it goes in the future. Wishing you wisdom as you make your decision. Regards, Sharon Moore patient leader This is all of interest to me too, Siouxsea. Please let us know what you do. I saw my retinal specialist this week and because we had discussed Syfovre 12 wks ago, and he said he would be receiving it soon, we discussed it again. He said he had given it to 4 patients and then heard about some of the severe adverse reactions, that had been reported, and has not given it since. Appelis has still not released the scientific data from the Phase 3 clinical trial and he said he really wanted to review it before moving forward. I decided I wasn't THAT much of a trailblazer at this point, and haven't chosen to get the shot right now. He did say that the number of people in phase 3 clinical trial (typically up to 3000, though I don't know the size of Syfovres) was just a way smaller group than the 50,000 people who have now gotten the drug. So, it's not surprising to see new adverse reactions. {sigh}. He said other drugs were also coming out in the next several months for GA which looked more promising with the results already released. Consider me "just waiting".
it seems many of us are choosing to wait and see more results from Syfovre. I am anxious to see more treatments that may have less side effects. Keep us posted if you decide to try it. Regards, Sharon Moore patient leader
