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Wet AMD Discussion Board

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  1. My father has wet macular degeneration and has been having anti-vegf injections for over ten years now. Since changing to a new specialist he hasn't required an injection for over nine months. Has anyone else had the time between injections spread out so far, or even longer? Wendy, Advocate.

    1. Yes, wet in the left and dry in the right. I am legally blind in the left and about 20/60 or so in the right--stable for now. I also have glaucoma in both eyes. When I get dilatated, the pressure tends to go up. I wonder if anyone else has this problem.

    2. I hope your dry eye hangs in there for you! Glaucoma does make things more complicated. It is known that anti-VEGF injections can increase the pressure in the eye. I don't know if dilation does that too. Best wishes, Wendy, Patient Leader.

  2. Hi Wendy,
    Your story angers me because I have a similar situation. I have had wet AMD first in my R-eye and dry eye AMD in my L-eye for 15 yrs. The dry changed to wet about 2 years ago. I also have Glaucoma in both eyes for 15 yrs.


    I went to the same specialist for 9 of those years. His personality was a rather abusive. If I asked questions, he would answer with things like “what, you don’t like the way I do things?” And I would say, “ no, I just want to understand what you’re doing and why”. He would say “who is the Dr around here? Me or you?” I said “you never take the time to explain anything to me and I have a right to know”. He replied that if I didn’t like what he was doing, I could go find another dr, because there’s no ther dr in our city that does what he does!”


    At this point I would be on the edge of tears knowing that I needed the shots, but fearing there wasn’t anyone else I could go to. So I kept coming back every two weeks because he said I could have the shot in both eyes on the same day. So I would alternate a week in between. Since I can’t drive, I had to pay Uber or Lyft to take me and pick me up. As prices rose, it was costing me over $20 round trip.


    Well about 3 months ago, I was finally fed up, and I walked out of his office because no one was wearing a mask and I was told it was optional now. Well I have RA and take infusions that lower my immune system drastically. In a dr office with close chairs 8n a waiting room was not acceptable to me. So when a nurse told me to stop complaining I left without seeing the Dr.


    Here’s where I was gaining with my story. That Dr had intimidated me for 9 years and thousands of dollars to make me feel like I couldn’t question him. I went home and began looking up ophthalmologists in our town and the second one I called not only had a Dr that could give my shots, but the had a specialist for Glaucoma too!


    And in addition, their office was 2 blocks from my house!
    When I called to make an appt. I asked if the y had a Dr that took the time to explain things and told them about Dr Powers. When they heard his name, they said they had many patients who had come to them from his and even some technicians who wouldn’t put up with his temper. I just wanted to cryi was so happy. They suggested Dr Ho and said she was so nice and gave her patients call the time they needed. Well they were right and one of 5he first things I asked was about having to come in every two weeks, and she wrinkled her brow and said “no, I can do both eyes the same day” I almost jumped up to hug her! I said why would the other Dr say he couldn’t? And she said, some dr don’t like to do it the same day because Medicare only pays the Dr, 60% of the second shot on the same day. But he would get 100% if he waited a week. I was angry then that I had been coerced into coming every two weeks so HE could make more money off me!


    Now, here’s one more thing, I had read about a drug called Eyeola that could allow the length of time between shots to increase up to 6 weeks but Dr Powers said it was too new and Medicare probably wouldn’t pay for it, plus why change something that was working? Well, Dr Ho, talked to me about thinking about changing to this “new” drug. She thought I would be a good candidate for it. I waited a month then came back and said let’s try it.
    So last week was my last 4-week appt and my next appt is 5 weeks. We’ll see how that does. I have never gone more than 4 weeks between injections for 15 years!


    Dr Ho showed me the photos taken of the back of the eye and explained where my disease stood at this time. My R-eye is at 20/200, and my L-eye fluctuates between 20/60 and 20/70 depending on my Glaucoma’s influence. She seemed to think that I was mostly seeing through my L-eye so we would be focusing on how the 5 wk on Eyeola did.


    Let me ask you, does your father have a Supplement along with his Medicare? That is what I have and it covers 100% of everything except medications. Some drs will see that you have this type of insurance and think you won’t question what they tell you because it is paid for 100%. I don’t feel that way and I questioned a few charges that I didn’t think we’re done but we’re billed for.


    Wendy, how far between injections was your father originally going? 9 months seems a long time, but maybe his progression wasn’t very fast? I know people have gone 3 months that I’m aware of, but may I ask how old your father is? If his disease isn’t progressing fast, (and hopefully your father got his old Dr to send his records to the new Dr.) The new Dr can tell through the photos of the eye how long your fathers changes have progressed. And he may be judging that his eyes won’t change enough and he can wait for 9 month to check again. It appears to me he is taking a wait and see attitude. Of course, the best thing is to ask him why the big change in time between injections. I’d like to hear his explanation also.


    Having been taken advantage of by one Dr makes me suspicious of most others. But now I feel very happy with my Dr. Including the new *laucoma Dr in the same office. So convenient.

    1. thank you for taking the time to explain what has been happening with you and to enquire after my father. Firstly, I am so pleased that you changed doctors. You were very unfortunate to be with the previous doctor. I know what it is like to be immuno-compromised from when I had chemotherapy, so I entirely understand your issue with the non-masking situation. I'm so glad you found such an excellent practice and new doctor now. I wish you good luck at your next appointment and hope the extension in time is successful. You must feel so relieved to have found a caring and competent team now. It will make such a difference for you. Regarding my father, unfortunately we lost him just recently at the age of 97. He did manage to retain functional sight until the end, although reading was difficult for him. As he got older, other factors came into play, including the difficulty in getting to appointments and the fact that I am 1000 km away from him (we're in Australia). Frailty and fading memory also complicate things. I think the new doctor had decided to concentrate on the "good" eye because possibly his "bad" eye could take no more injections. I'm not really sure why the break in injections was so long. I couldn't always go with him, and when I would phone the surgery afterwards, the nurse would just say that he hadn't needed an injection at that visit. She didn't really know exactly why. His previous doctor used to take OCT's on one day a week, and then do all injections on another day in the week. This was extremely difficult for us. The injections were done in what we call a "day surgery" where private fees were payable to the surgery, as well as the doctor. Then she left the state because of Covid, and that's why we had to get a new doctor. All-in-all, Dad managed to see for his whole life, so things worked out OK in that way. Wishing you all the best with your sight, and please let us know how things go for you. Wendy, Patient Leader.

  3. Oh Wendy, I’m so sorry to hear of your Father’s passing. 97 was a good long life and with some sight, it was probably, like you said, the drs choice to focus on the good eye. Either way, in my belief, he has perfect sight now and full faculties too. God Bless.


    My mother had both AMD and Glaucoma also by her 80s. She added Alzheimer’s to that and it was hard to know what she saw. They never treated her AMD, at age 85 and as the Alzheimer’s took over, the assisted living just gave her glaucoma drops. She passed at Age 88 after a serious fall. My sister and I chose hospice for her and she slipped away. Now, like your father, she’s dancing with dad with full sight and no arthritis.


    Thank you for the positive thoughts on switching doctors and I am hoping that Eyeola will allow a longer time between injections. My month is full of monthly medical appointments and if I can cut just one down I might be able to go for a vacation. My calendar fills up with an infusion for RA every 28 days, my glaucoma checkup monthly, my AMD injection monthly, my Rheum dr every 2 months, my primary dr every 3 months, appts for 4 Covid vaccines, appt for Flu shot, annual mammogram. Bone density appt. Blood work every 3 months . And that’s if I’m healthy. Hahaha


    I might mention I’m 71. I had to retire on social security disability at age 57. It sure wasn’t my idea of retirement😉 but I’m grateful for what I have. I’m saving up to pay 1/2 of the “Orcam my eye 2.0” for Xmas. It’s very expensive so my son has offered to pay half as my Xmas gift. You attach it to the side of your glasses and just point at what you want it to read. You hold your hand up to stop it at any point. It has smart read which you can say start reading at headline in a newspaper, or 2nd paragraph ,etc it does not need attachment to any Wi-Fi. It can read street signs, it uses artificial Intelligence. I use my phone now to take a picture of a menu at a restaurant and then I can enlarge it. The Orcam will allow me to read it by just pointing. It has face recognition as my sight lessens I’ll know who is speaking and so much more.


    I’m sorry to ramble on but I’m so excited to have something like this that gives me hope to “see” things wherever I go.
    Sincerely
    Connie

    1. thank you for your reply. My mother had glaucoma and dry amd, too, so I know what that's like for an older person. And she broke her hip, too, but managed to recover from that. I do hope you get to go on your vacation. There's an art in arranging our medical appointments so they aren't spread out all over the place. I seem to have accumulated a specialist for every part of my body! Thankfully, some of them only want to see me every two years, so that's manageable. Others, like the eye specialist, are every six months. I'm excited to read about your upcoming Christmas gift, the Orcam my eye 2.0. I'm going to read up on it. I don't recall anyone in this community mentioning having one, so we will all be interested to hear lots more about it in due course. How did you find out about this device? Are you going to receive some training with the device? Have you tried it out all ready? Sorry about these questions, but it sounds as though it will be wonderful for you, and I don't know much about it. Warm wishes, Wendy, Patient Leader.

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