|
Listen to this article
 |
Hey there! Lin asked me to update you on what is happening with my vision and my involvement in clinical research. There was an ARVO (Association for Research in Vision and Ophthalmology- good people!) article about “my” research she wanted me to read and comment upon; ARVO 2024: 36-month data from the GALE study of pegcetacoplan.
To answer your unspoken question first: No, I have not seen any positive difference in my central vision since being in the studies. The basic reason for that is simple. OK, maybe not so simple, but it goes like this: Syfovre is not supposed to improve my central vision. I have a lot of dead cells in there and Syfovre is not supposed to replace them. What it is supposed to do is slow down the speed at which I am losing my central vision. In other words, I was “supposed” to be losing central vision at 100 miles an hour and now, based on the research findings, I am losing vision at about 60 mph. Do I know what 100 mph central vision loss looks like? Nope. Ergo, I do not know what 60 mph central vision loss looks like and I am not able to perceive any differences.
Another thing you probably are not going to like is this: I do not get personal progress reports. I have no idea if I am responding well to the drug or even if I am responding at all. My data just gets lumped in with the data of hundreds of others who are in the trials. This is research. Research is a different animal.
That said, the research does look promising. I was in Derby (one of the 2 phase 3 clinical trials) for a few years. It was while in Derby that I did my teeny-weeny little bit to help bring Syfovre to market as the first, FDA-approved treatment for dry age-related macular degeneration.
After Derby, I was enrolled in Gale. As I said in another forum, I saw my role in Gale as side-effect hunting. We went three years getting shots in our study eyes and waiting for something untoward to happen. At least in me – and the great majority of my compatriots – nothing nasty happened. The article suggested there were no increases in side-effects when the medication was used over time.
Not having to deal with side-effects was great. And the ARVO report had even better information to share. The researchers found Syfovre appeared to have a cumulative effect the longer you use it. After three years, the reduction of lesion growth was at 35% in those who were being treated monthly – that was me! After another year, the drug efficiency went up to 42% reduction of lesion growth in those who had monthly treatments. Cool.
I have never hidden the fact I want to stay with the research team I have as long as possible so that I remain on the cutting edge of the research. I intend to see well again…even if I am 102 when that happens. I have this diabolical plan that depends on Apellis deciding they want to use me to see how well stem cells “take” in an eye that has been treated for years with Syfovre. (Anyone at Apellis listening? Put me in, coach!) [Lin/Linda here: you should read about her diabolical plan, just click on those words in one of the previous sentences.]
I got finished with Gale last month ,April, 2024, and was offered a spot in Garland. (Is there a logic to these names? If there is, I have not discerned it yet.) According to Charles Wykoff writing for Modern Retina, Garland is a phase 4 study. Phase 4 is a study in which the treatment is administered by non-researchers, professionals in the community. It is to see what happens with safety and efficacy of the drug in the “real world”. To this end I have re-connected with my local retina specialist. They will give me my shots and I will check in with research every six months.
Got to make sure they remember me; ya’ know. Not only because I want to be there when bigger and better things happen but also because I really LIKE those folks!
Anyway, that is where I am now. Planning on spending the next three years going for shots in both eyes locally and checking in every six months with the research team. Hopefully, the efficacy of Syfovre will continue to increase and buy me more time with my vision. Time will tell.
Added May 14th, 2024.
Other Pages
Who is Sue & Why Should You Get to Know Her
How Does Sue Do What She Does? Her Toolbox 2023 Version
Sue’s Series on Syfovre
Lin/Linda: Her first aspiration to be a ‘super lab rat’ was not long after she considers the start of her status as legally blind: February 2016. You can read about that here: In the Beginning.
It was June 2019 she was Finally a Lab Rat. In July of that year, she wrote about her first injection: The Beginning of My Clinical Trial.
In August 2022, before the FDA approved Syfovre and after she was accepted into the long-term follow-up study, she wrote about her ‘Diabolical Plan’ to be accepted into a stem cell clinical trial while she’s still alive: My Diabolical Plan: Stem Cell Transplant for Dry AMD.
She also wrote about the discussions of the studies: Pegcetacoplan Study Cliffhanger.
After the drug was approved, she revised her article from her perspective of being halfway through the 3-year follow-up study: My Diabolical Plan Revisited March 2023.
She’s also written What Does Syfovre Mean for You?