Depressed to learn I have dry macular degeneration (AMD): What helps?

Posted by sallyvic @sallyvic, 3 days ago

I just came back from an appointment with my retinal specialist and I've never been so depressed. I had been diagnosed with dry AMD about a year ago. She reports that I have advanced AMD although I still have sight except for some wavy lines in addition to cataracts. She has pretty much told me that any and all—though not many AMD options—have risks—even could cause blindness. She also cautioned me that cataract removal carries same risks. And, not much has been approved by FDA.

Can anyone help me feel better! Anyone who's had success with treatment(s). Or, who could give me a better outlook on life. Some may have recognized me as having a hearing problem to address. Good thing the sun is shining today.

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I had dry AMD in one eye for several years with no symptoms before it progressed to wet. Had injections for a couple of years, lost some vision, but it was in my weak eye (I have amblyopia) so I didn't notice it much. Then I had cataract surgery in my good eye, and was diagnosed with wet AMD in that eye the next month. They think it was just coincidental. I've had injections in that eye at 6 week intervals for 7 months so far, and my vision is good, vastly better than my previously uncorrected vision, but not perfect. The worst part of it for me is that I have a very minor distortion in the center of my field of vision, just enough to prevent me from reading music accurately. I was a professional musician for 60+ years, but have had to retire. Not too bad at 82. About to have cataract done in the weak eye, which they think will improve my vision somewhat. I wouldn't hesitate to have the injections if they recommend it, also take eye vitamins. Not fun, but I can do everything (read text, drive, etc.) but read music. Hope it works out well for you.

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I have had macular degeneration, dry for 12 years and in February my left eye went to wet after seeing the wavy lines get worse. I am getting injections, Pavblu same class as Eyelia. This medication will advance my injections to once every four months. I am now at ten weeks. I feel like I am stable. My left eye vision is a little hazy. I have not had cataract surgery yet and at some point will need it. I am grateful for these new meds that slows vision loss and can even stabilize them. I do take eye vitamins and have a healthy diet. It has become a full time job taking care of my body at 83. Mayo Clinic Connect has really given me support and helpful information. Each person’ s body is unique and all are different. So what works for one person can be different for another. I like that we are here for one another. One day at a time.

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I have had dry AMD for 10 years and it had remained stable until my April 2026 appointment when I was advised that my AMD had advanced to GA (geographic atrophy) which is considered late stage macular. Since April I have been extremely proactive in researching every possible avenue and have had consult visits with numerous retina doctors. I have doctored with MidAtlantic Retina since 2013 and will continue with them. I have been seen by Scheie Eye Institute last week and was told by them and another retina group that I should not try the injections for the dry macular at this time bc there is a good risk of the injections turning the dry into wet. Scheie Eye will not treat the dry with injections bc they feel the risks outweigh the benefits. My lesions are on the outer edge and are still away from my central vision. Every doctor including MidAtlantic has advised to just take vitamins and eat healthy diet and continue every six months with the scans to monitor the drusen and hopefully it will stay as is or progress slowly. Unfortunately it is just a sit, wait and pray situation. The doctors said some people can go years until it reaches the central vision but everyone is different. It could progress faster and then they may change their game plan. I have been to four different eye institutes and have decided to follow advice of MidAtlantic with hopes I am doing the right thing. I even considered the new Valeda light system and went for a consult with excellent retina speciallist in my area that MidAtlantic recommended if I wanted to try that route. I have decided to wait six months and see if there is any progression. If there is, I will try the Valenda bc it is not invasive. It does have a slight chance of turning dry into wet but it is too new for them to determine if the Valeda is causing it or if it would have happened without the treatment. It has been used for dry macular for over five years in Japan, Germany and Switzerland. Europe did not approve the two injections being used for dry macular in the U.S. I know exactly where you are at and understand your anxiety. I have been emotionally upset since this diagnosis in April. I realize that I need to trust in my doctors and still keep proactive looking for new research.
I do now also take along with the AREDs another supplement which MidAtlantic Retina is fine with. It is Life Extension MacuGuard Ocular Support.
There are many articles stating that the AREDS is missing some key vitamins that feed the macular. This vitamin has those components. The macular needs 20mg of Lutein and AREDS supplies only 10.
It also needs saffron astaxantun and miso-zeaxanthin. This vitamin includes the missing components in AREDS and does not overlap in the components in the AREDS. It gives you the extra Lutein missing in AREDS.
Hope my comments were helpful and did not confuse you more.
This is a great website for us to confide in each other.
My phone keeps changing the spelling of Lutein. Hopefully when I press send it stays corrected.

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triciabliler, Bless you for the information. It is the most helpful advice that I have received, including that of my specialist. I hope mine stays stable for a while since I was first diagnosed in 2018...I want to hang on to that hope.

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