Wet Macular Degeneration: What treatment helps you?

Hi @jameslgo, I don't know about any in-person or online support groups in Rochester, MN for age-related macular degeneration. But you've come to the right place to connect with a network of people living with macular degeneration. Tell me a bit more about yourself and I'll connect you with others.

Do you have dry or wet macular degeneration?

I have wet macular degeneration and have had shots in that eye for about three years. I'd love to be part of a support group with others who are living with macular degeneration. Can you connect me with the others you speak of? Thank you.

Certainly @mjj and @jameslgo! Allow me to connect you with other members living with wet macular degeneration. First you're doing the right thing by following the Eye Conditions group: https://connect.mayoclinic.org/group/eye-conditions/

I've moved your posts to this existing discussion where you can connect with @lvon @sweede536 @pacer3702 @realitytest @downeaster @kathrynmc. Let's pull our chairs into the "virtual" support group here in this discussion.
- Wet Macular Degeneration: What helps you? https://connect.mayoclinic.org/discussion/wet-macular-degeneration-1/

You might also wish to join this discussion that @dsh33782 started:
- Low Vision: Let's share about coping day to day https://connect.mayoclinic.org/discussion/low-vision-1/

When were you diagnosed with wet macular degeneration? What tip would you offer someone who has just been diagnosed?

2018 is when I first was diognosed . Right eye only. Then 2020 left eye,but I was keeping up with my eye photos 3x a year and although I knew right away by the dark shadow I had it in two eyes. I have faith fully kept my apointments,have kept sun glasses on outside, stayed off my computer at night and now 3/3/2022 my right is cleared up completely and my left eye is 20/25 and will soon be perfect also. Thanks Mayo Clinic for your care and here's looking at ya!

Colleen, I do not have wet macular degeneration, I have Dry macular degeneration. Kathryn

I was diagnosed with dry AMD in both eyes and wet AMD In the Left eye in 2019. I’ve been getting Avastin injections since then which helps with the wet AMD. What helped me the most was talking to a woman in Washington DC who was able to tell me how she manages day to day tasks. When I was first diagnosed I had no idea what this really meant. I wanted to know how I would be able to do things like pour coffee, make food, clip my nails. Until I found this 92 year old mother of a friend no one said much more than “your vision is okay now. You can talk to vision rehab when you need it.” What I needed more than anything was someone who, from experience, could tell me that chances are good I will be able to function. Everyone is different and disease progression is individual but at that moment I needed someone to help me keep from sliding into serious depression and fear. I was lucky to find that. The doctors are doing a good job treating my eyes, I needed someone to give me real hope.

Wow! What remarkable improvement!
I wonder if your treatment protocol at Mayo has made all that difference or whether it's the nature of your condition.

I give the Mayo all of the credit. They did say I was actually one of the fortunate ones, not everyone turns out this good!

Did you ever look at the blown-up retinial photographs from a fluorescein angiogram of your eyes? I've studied two of mine and I can see where the dead cells are covering (or leaving uncovered) my maculae - very central vision . Only my right is is "wet" for now and I can match up my bad spot on that eye with the place in the photo where the toxic fluid covered my macula (central vision) and killed those cells. (Only the "active" spots - where the little abnormal capillaries are still leaking - can be fixed with the special chemicals in the injections. They block the action precipitating the bleeding capillaries.)

The injections have stopped my leakage but the spots already scarred can't be fixed.

I'll bet your "spots" left more of the central macula undamaged and thus your visual acuity was preserved.
Not that Mayo didn't do an excellent job aiming at those tiny little "bad" areas.

Wondering how much going to Mayo would help me (it's very far). Do you live near a Mayo branch? How often did they inject you and with what (I'm getting Lucentis.).
I also wonder whether more. frequent injections would improve my results.

My doctor is following the "treat and extend " protocol (stretching out the injection intervals after the first few) instead of continuing the monthly injections as they do in clinical trials. Patients in clinical trials fare better than "in the field" - i.e. the average retinal practice. I was very interested in reading the conclusion of the scientists running them, that the average patient is UNDERTREATED (and thus their results are worse)!

I asked my doctor about that and he scoffed, saying research shows it doesn't make much if any difference - "only a few letters a year, at most."

Well, I say those few letters matter a helluva lot! They're referring to the letters we see on the eye chart - that's how they measure visual acuity!!
I'm now wondering if your intervals were more frequent and that's another reason you had such good results.

My "tip" is go to the best retinal specialist you can access. (I'm going next week to a specialist at the John Hopkins Wilmer eye clinic instead of relying on a specialist who serves Central PA.) That's where I have the misfortune to live. Wilmer is three hours away and I have to pay a driver as I figured it was too risky to drive myself, especially on the way home in the dark and after the dilation and a possible injection.

I say misfortune because we are markedly "medically underserved" - i.e., many specialities are scarcely available and that with very lengthy waits, while those we have are just plain overall not as good. (I've read in many places that patients who live in rural areas have much worse mortality rates from COVID than in large cities or near teaching facilities. I provide this as an example of how prevalent this phenomenon is - that is, the disadvantage medically of living in an underserved rural area. Cancer outcomes among others, are worse too.

Preserve your vision if at all possible, even if it costs you more!