Wet Macular Degeneration question

[RandyM]

I have WMD in one eye and Macular Degeneration in the other.

I was getting eylea injections for a few years and the bleeding in the WMD eye stopped. I was still getting monitored with the Xray thing every 3-4 months.

Now, I have a large dark shadow in the center of that eye and many curvy wavy lines in my view. The Amsler grid looks like a huge shadow filling up 3/4 of the chart with lots of curves.

The Retinal specialist says it is fluid, not blood, and he will see if my insurance covers a new drug to correct this. I forgot the name of the new drug but will find out next week if it is approved. I am very worried because I am pretty much blinded in most of the WMD eye.

It started when I got the COVID19 and wonder if that caused it? Anyone else ever got a fluid filled eye such as this? Thank you!

[tallyho]

I wonder if it’s macular oedema he is referring too. This is different to your other issue as it involve a different layer within the eye

[RandyM in reply to tallyho]

Oh! I should have asked him about macular oedema! I trust he would do the right thing for me as he is a Retinal specialist. He showed me the eye scan and how it changed drastically. I will research the oedema and find out more. Whatever is causing this is quite concerning. Thanks for your input tallyho. Quite interesting! Bless you and best regards...😊👍❤️

[Retired130]

I have had WMD in my right eye for 5+ years. I have been getting Eylea injections in my right eye for 4 years+ after Avastin stopped working. I can tell you that the only way to keep the fluid once it has stopped is to continue the Eylea injections.

Over the past 4 years, my Retina specialist has tried to extend the interval between injections. At first, after the initial Eylea shot once every month as a bolus load, I then went to every 6 weeks. After several months, we went to 7 weeks, and then 8 weeks. However, when we tried to go 9 weeks the fluid returned. So we had to go back to 5 weeks and then stayed at 6 weeks for several months. Again, we tried to extend the interval, but we could not go past 8 weeks. The Retina specialist does not want to try to do this again as he said every time we go too long between injections, there is a danger that the fluid might never stop at some time in the future, so I am now at an Eylea injection every 6 weeks for about a year.

I have been told that each person is different, so some can go 3, 4, & even u[p to 6 months between injections, while others must get them every 4 weeks. In my case, 6 weeks seems to be the optimum interval to keep the fluid and/or bleed from returning.

I feel your doctor should have started you back on Eylea at the first sign of fluid returning. I also feel you must accept the fact that you will need an injection for the rest of your life to keep the fluid or blood from leaking. By trial & error, you will discover what the best interval is to keep the fluid leak stopped.

[RandyM in reply to Retired130]

Retired130. My retinal doc stopped eylea injections 2 years ago! He said the bleeding stopped.

Now the "fluid" build up has been around 8 months and getting worse! I will mention if he should have kept me on the injections! I really don't mind the injections because he uses a painless method. Injections for the rest of my life you say! I guess if it helps, I will have to accept that. Thanks for telling me your situation and hoping the best for you. ❤️👍😊🙏

[Magsofkent]

I have injections every four weeks as fluid returns otherwise. I have now had the new Vabysmo for the second time last week to see if can go longer. I was told after the first jab fluid had gone on scan consultant showed me the scan. 🤞

[RandyM in reply to Magsofkent]

Magsofkent, That is great news! Did the fluid do any damage prior to the new Vabysmo working? Maybe that is the drug I will have to get now. I'm happy it worked so quickly for you and hoping it will for me too! Thanks for giving me hope. 🤞👍🙂

[Magsofkent in reply to RandyM]

I have had injections for over three years can’t go longer than four weeks so hope this new one works better will keep you updated. I have also got a large PED in the wet eye surprisingly my eyesight is not too bad the chart is good but details not good. It’s never dried always been a stubborn leak the PED arrived after being extended once to 8 weeks. Fortunately hardly any scarring in central vision. My other eye is dry and optic nerve damage years ago. All the best for you

[RandyM in reply to Magsofkent]

Yes, please keep me updated. Is the leak only fluid or actual blood that you have? My doc said I don't have a blood leak, but lots of fluid. I guess either of them is not good. All the best for you too! 🙏❤️

[tallyho in reply to Magsofkent]

so glad you get to try Faricimab I was on the NICE technology appraisal for this in the Uk ( deciding if it should be available free on the NHS and we decided ‘Yes’) I too am looking forward to trialling it but although we dual approved it for AMD and DMO I will have to wait as those with AMD will get it first 😔.

[Hidden]

I had injections for 8 years. Firstly lucentis then eyelea both 4to8 weekly then ozurdex implants (7 of them each lasting several months) and then back to eyelea. Last inj 8 weeks ago.In that time I had one period of 3 months fluid free about 4 years ago. But have just been told I am now stable.No more injections unless I feel my vision is deteriorating. They will monitor me every 3 months.

So please take hope, oedema can stabilise.

[RandyM in reply to Hidden]

Eyesright, Great news on no more needing injections for you! I was getting eylea for 2 years, every 3-4 months, then the doc extended the time between shots. When the COVID hit at the end of 2019, he said I would just need check ups. So no shots for 2 years! Recently I noticed a change in my vision and he said there is only fluid build up, not blood. He started me on Vabysmo. Thanks for giving me hope regarding the fluid oedema being eliminated. Hugs to you and hoping your vision remains stable a long long time! 🥰🙂🙏