Wet Macular Degeneration: What treatment helps you?

Posted by lvon @lvon, Jul 22, 2020

I have recently tried a different injection for my Wet Mac and was almost cleared up and was worstend by this drug. I have gone back on my previous drug and cannot get any satisfying results. Has anyone had this experience?

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@lvon, I'm tagging fellow members @ktcrosswalk1 @suemer @peggyj4411 and @sut who also have wet macular degeneration and who may be able to share their experiences with treatment options.

Ivon, you said that you tried a different injection and that things were getting better, but then something made things worse. Are you referring to Avastin (bevacizumab) following by Eylea (aflibercept) as you outlined in this discussion?
– Side effects of Eylea injections https://connect.mayoclinic.org/discussion/side-effects-of-eyelina-injections/

Did you only get one injection of Eylea? When did you return to Avastin?

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@colleenyoung

@lvon, I'm tagging fellow members @ktcrosswalk1 @suemer @peggyj4411 and @sut who also have wet macular degeneration and who may be able to share their experiences with treatment options.

Ivon, you said that you tried a different injection and that things were getting better, but then something made things worse. Are you referring to Avastin (bevacizumab) following by Eylea (aflibercept) as you outlined in this discussion?
– Side effects of Eylea injections https://connect.mayoclinic.org/discussion/side-effects-of-eyelina-injections/

Did you only get one injection of Eylea? When did you return to Avastin?

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Yes I only had one injection of Eylea and within 6 hours my eye went 75% darker and my vision was so blurry for 4 weeks. I went from 20/20 to 20/40 in that eye 5 weeks after the injection and I cannot get the inflammation to go away in 5 months now. I did go back to Avastin and It does not help as before the Eylea.

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Ive had 6 injections but not sure what there called, what two have you taken and which one worked best for you. it gave me about 85% back but the middle is still distorted. I get a lot of eye strain which makes my left side cramp up in pain. I once in a while put on a eye patch and that relieves the strain! do you take special vitamins?

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Wet MD in one eye… shots have been successful, so far…

I am 78, diagnosed with wet MD in one eye about two years ago. My interval between shots had lengthened to four months, due to no progression (and no changes in vision). Last time I went in she said my “bad” eye was “acting up a little,” so my next shot appointment is three months instead. She told me once that I’ve “really beaten the odds,” as “most people fail within the first two months.” I’d like to hear from people whose eye has “failed,” and what the symptoms were or what to watch out for. I use my Amsler Grid daily, take my Preservision2 twice a day, and try to be optimistic. Of course I worry. I think a discussion group such as this might be therapeutic for me, as I know no one else with wet MD. (I’m in California, but I sure wish I were close enough to be a Mayo Clinic patient. Alas, not to be…)

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@mjj Welcome to Mayo Clinic Connect, a place to give and get support.

You are worried about your diagnosis of macular degeneration and you are looking to connect with people that also have this diagnosis.

Congrats on beat the odds but understandably you are still nervous about vision loss.

What do most people fail in the first two months? Do they mean the treatment fails to work?

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@sweede536

Ive had 6 injections but not sure what there called, what two have you taken and which one worked best for you. it gave me about 85% back but the middle is still distorted. I get a lot of eye strain which makes my left side cramp up in pain. I once in a while put on a eye patch and that relieves the strain! do you take special vitamins?

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The only injections I've had are Avastin. I guess they're working okay, since I've had no progression. My very first visit my doctor recommended Preservision2 twice a day, which I've been taking religiously. They are expensive pills, but Costco has good sales on them. So far I've had no vision changes, except dry eyes, which apparently was caused by Systane eye drops. She said I was reacting to the preservatives, so I changed to a drop with no preservatives and the dry eyes (and bloodshot wet eyes) have cleared up. The new drops are expensive, but necessary.

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@erikas

@mjj Welcome to Mayo Clinic Connect, a place to give and get support.

You are worried about your diagnosis of macular degeneration and you are looking to connect with people that also have this diagnosis.

Congrats on beat the odds but understandably you are still nervous about vision loss.

What do most people fail in the first two months? Do they mean the treatment fails to work?

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She apparently meant that my central vision begins deteriorating. This must mean that the treatments eventually will fail to stop the progression. She gave me no prediction of when, so I just continue with what I'm doing. I did ask her if my other eye (which has drusen) will also turn "wet," and she replied, "It's a progressive disease, Mary." I guess that's a "yes," but of course she can't give me a time-line for either eye, and I don't expect her to. Meanwhile, I continue trying to take care of my eyes and my health the best I can: eating right, exercising, not smoking, keeping my weight down, etc.

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what was the name of the new injection drug and what one did yoy do back to?

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@lvon

Yes I only had one injection of Eylea and within 6 hours my eye went 75% darker and my vision was so blurry for 4 weeks. I went from 20/20 to 20/40 in that eye 5 weeks after the injection and I cannot get the inflammation to go away in 5 months now. I did go back to Avastin and It does not help as before the Eylea.

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If you had this severe reaction within 6 hours of injection, it seems the problem could have been the injection and not the new drug. The other possibility is that your capillaries leaked before the injected medication took effect, but that seems unlikely. I would seek the opinion of a different retinal specialist. I hope this information helps.

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Does anyone know of an active AMD support group that meets either online or in Rochester, MN?

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@jameslgo

Does anyone know of an active AMD support group that meets either online or in Rochester, MN?

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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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@colleenyoung

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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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.

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