By Diane Marshall, as told to Keri Wiginton
The choice to get treatment for the wet form of age-related macular degeneration (AMD) is a no-brainer. You have to get shots to save your vision. Fast intervention may even improve your eyesight.
And for those of us with geographic atrophy (GA), an advanced form of dry AMD, there’s hope for the future now that the first-ever treatment was approved. The pros and cons aren’t so clear-cut, but after talking to my retina specialist and people in my AMD community, I decided to go for it.
I got my first eye injection earlier this summer. I felt a weird sensation of pressure but no pain. And I’m fine with that.
I hope this treatment slows the growth of my GA lesions. Though, I’ll admit I’m conflicted about whether to keep getting shots in my eye every month or so for the rest of my life. But here’s a little more about the thought process behind my decision.
What the World Looks Like With Geographic Atrophy
My optometrist diagnosed me with early-stage AMD at the age of 54. At the time, the retina specialist told me not to worry too much about it. Fast forward 22 years.
At 76, I have GA in both eyes. Recently, I became legally blind in the left one. That’s a bit of a misnomer because I can still see out of it, but I tell people to imagine looking at life through a lens coated lightly with petroleum jelly.
Areas of my central vision, especially in the left eye, are also blank or grayed-out. For example, I can’t see the corner of my TV if I look straight at it. Letters are sometimes so faint, I can’t read them. Entire words at the end of a sentence disappear.
And like many people with GA, I can’t make out facial details. Someone can be 5 feet in front of me, and I may not know who they are unless I pay close attention to their body language. Even my face is foggy when I look in the mirror.
My depth perception is also off. The other day, I tried to pour water into a glass and spilled it all over the counter.
Why I Asked My Doctor About Geographic Atrophy Treatment
This new treatment won’t reverse vision loss but may slow the growth of GA lesions by 18% to 22% in the first 12 months. That rate may go up to 36% if you get monthly shots for 2 years. Those numbers seem minimal to me, which is why I was against getting the shot at first.
But my retina specialist gave me some shocking news several months ago.
The visual acuity in my left eye was no longer stable at 20/70. At first it was 20/150. But it didn’t stay there. When I went in for a checkup a month or two after that visit, my vision had quickly progressed to 20/200. That qualifies me as legally blind in that eye.
In the past, changing my prescription made a big difference. But my optometrist told me there’s not much he can do to correct my vision past this point. That’s when I realized I needed to do something to stabilize the sight in my left eye.
I asked my retina specialist if this new shot could work for me. While he didn’t bring it up first, he agreed eye injections might be helpful to slow the progression of GA in both my eyes. And I can always switch to better treatment if one comes along, he assured me.
While I went ahead with treatment in my left eye, I still have a basket of questions running through my mind. Some you may want to ask your doctor are:
- Do the shots boost my chances of wet AMD? If so, by how much?
- What happens if I get shots for GA, and then I need them for wet AMD?
- How much will the shots slow GA over time? Do the benefits build up over time?
- Are there long-term side effects we don’t know about yet?
- Do the risks and time commitment outweigh the benefits?
- How bad is it really to lose all my central vision?
Will I Keep Treating My Geographic Atrophy?
My retina specialist says the choice is mine, and I can stop whenever I want. For now, I plan to keep getting the shots. And I’ll get treatment in both eyes at my next appointment. That means one needle poke in each eye on the same day.
My right eye was 20/60 the last time my eye doctor checked, but I think it’s worse now. And I need to protect it as best I can. So far, it can fill in some of the blank spots in my left eye. And I always close my left eye when I read so I can focus with my right eye only.
If I knew safe stem cell therapy or gene therapy was close at hand, I would probably pause the shots for a little while. But we don’t have a timetable for advances in treatment for GA.
And I’m worried that if I don’t act now, my vision might completely deteriorate. If that happened, I would regret not doing more when I had the chance.