Wet Macular Degeneration: What treatment helps you?

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.

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I started Avastin injections every four weeks and ended at every eight weeks. Yes I am 40 minutes to mother Mayo in Rochester Mn and I have two Mayo Clinic’s 7 minutes on either side of me I can treatments. I am so very fortunate as far as health care. John Hopkins is a great clinic also. You are on this site and could get questions answered by the moderator. Stay positive!

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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?

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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?

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Good morning Colleen-
I have wet AMD in both eyes...have been getting injections in the right eye for about 6 years now, and the left eye for +/-2 years. I currently get Eylea injections every 6-8 weeks, and I'm grateful for the research being done for the disease, and I've heard mention of stem cell research (some good/some bad results). Wondering if anyone has success with Regenerative Medicine for AMD? Any new Trials out there that you have experience with? My only tip for someone who has been recently diagnosed with wet AMD is get to a quality Retina Center-if you are seeing an ophthalmologist, have them refer you to a Retina Center.

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@burrkay, you might be interested in the work of Dr. Alan Marmorstein’s research in macular degeneration and regenerative medicine.

- Delivering innovative stem cell therapy to slow vision loss https://regenerativemedicineblog.mayoclinic.org/2020/10/08/delivering-innovative-stem-cell-therapy-to-slow-vision-loss/

Did you see @realitytest’s message and question to you above?

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So glad to hear from a fellow sufferer with wet macular degeneration. (not of course that I'm glad for your misfortune).

I've only heard of clinical trials of stem cell research but only for dry macular degeneration. Not sure if this is the kind of research you wanted to hear about (regenerative). Interestingly I just heard about successful regenerative research for the deaf. They are succeeding with progenitor cells to regrow hair cells in the inner ear.

(I'm attaching an article about that research).

May I ask you please for more information about your wet macular degeneration journey. How is your vision progressing? How long did it take for the unaffected eye to develop the wet kind of. AMD? Where did you go for treatment?

Thank you.

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Thanks for your response…
Since 2003 I have been treated for AMD.
My vision changed to “Wet” macula degeneration in 2014 and my ophthalmologist started with injections - first with Avastin and changing to Eylea in August 2018.
Knowing that there had been considerable research being done with regenerative tissue implants and possibly other advances, I discussed my prognosis and expressed my desire to be included in any advanced care for my disease. I was then referred to the Retina Center for my care.
My left eye started showing signs of turning to wet in 2021, and my doctor started treating it as well in June, 2021.
I have interest in all the latest developments in this disease and appreciate your help.
Thank you and good luck in your pursuit
Bill

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