Eylea injections as a maintenance therapy for Myopic CNV

[Miss_Luce]

Hi all,

I have been having Lucentis injection for myopic CNV that I developed in May, I got 3 so far, at check in this week FA showed that my retina has dried up and there is no leakage/bleeding, however, my doctor suggested I do a maintenance series of injections with Eylea every two months. He wants to start with 3 and then recheck my eyes.

Has anyone had a similar experience? I read about a lot of people mentioning they did not need injections if the bleeding had gone, and also it seems the mainstream approach is to only inject the eyes if there is an active bleed. Would love to hear similar stories, I am happy to do a maintenance treatment as this is meant to reinforce the work Lucentis injections did and prevent my eyes from producing the vegf protein that causes the growth of new blood vessels under the retina, but obviously I am not looking forward to having them.

Oh, the joy of having great news and not so great news at the same time!

Thank you to anyone who will share their experience with me!

[DevonianA]

Hello. This seems the normal approach these days. Previously if things had improved they did not do anything and I went several months with no injections. Then there appeared some fluid and they went on the 3 injection assessment and I am now checked every 9 to 10 weeks and an injection is usually given. Seems to work OK. I am not in the medical profession so I don't know the reason why but presumably they think it is to our advantage.

[Miss_Luce in reply to DevonianA]

Thank you so much for your reply, DevonianA. I am 100% sure it is in our best interests, but I read so many comments from people saying they would not receive injections unless there was an active bleed, and that discouraged me.

I am of the opinion that it's always better to prevent something, and if the maintenance injections can prevent new bleedings then be it!

If you do not mind me asking, do you have OCT and/or FA at every check in before the injection, or after a series of them?

[DevonianA in reply to Miss_Luce]

At our clinic they do a sight test first then OCT scans which are passed to the doctor for assessment and he or she advises whether it is better or worse. They now seem to give an injection regardless. This has come about this last year.

[Chaz2010]

Hello, I am one of those people who had 2 injections and was then told I don’t need any more as there is no sign of leakage.. I wanted to have another one as my vision isn’t back to normal (still a bit distorted) but I was told my the consultant (Moorfields in London) that the injections do not prevent, that they only work on existing leakage/bleed. I am as lost as you are…

Sometimes I wonder if the doctors who say we need to keep having injections are the private ones…… or that the ones who say we don’t need injections are the ones on NHS.. if you know what I mean….

I would though LOVE to know what the best thing for our eyes really is. There are serious ‘potential’ side effects to these injection inc stroke so I would like to be able to make a very informed decision. Could you pls tell me if your vision is back to Pre- CNV after having the 3 injections (as in no distortion at all)? I was told that sometimes the distortion never goes away and that every eye is different, if that’s really the case I am gutted, I would like to hear from people who had injections for CNV, has everyone regained the sharpness of their vision? Pls. Best regards.

[Miss_Luce in reply to Chaz2010]

Hello Chaz, my vision in my eye with CNV did not fully return back to pre-CNV levels, but I only notice it if I test that single eye. It's not really distorted but written characters miss a few pieces here and there and I have a small positive scotoma on the left side of my central vision, when I am walking on the streets or doing normal activities I do not notice anything at all, so I'd say even though my vision did not go back to what it was before I would not notice much difference (apart from reading) today.

I do see my doctor in a private healthcare settings (I am in Ireland though, not UK), and I must agree with you that it seems the general approach for myopic CNV in public healthcare is to treat only if there is an active bleeding (it's different with AMD as that condition is worse than ours). It sucks that these drugs are so expensive, and that doctors are not open to give maintenance shots to prevent future bleedings.

Have you considered seeing another doctor for a second opinion? The standard loading dose is always 3 monthly injections for mCNV, I would ask them why they have not followed the standard protocol, as maybe a third injection may help you more with the distortions. I did see improvements after every injection and I would be pissed if they would not do it just for cost issues.

I really hope your vision improves! ☘️

[Chaz2010 in reply to Miss_Luce]

Hi, thanks for replying. 🙏 My ‘bleed’ stopped after the first injection, distortion improved a bit sp they didn’t even think I needed a second one but agreed to give it to me as I said if like to try and see if the distortion would improve so they did but at the 3rd appointment they said a definite no as they injection would do nothing. I asked a few doctor friends and optometrist too, they all said the Moorfields is the best eye hospital in the world so I want to believe they would do what they think is best for our eyes.. I do still wonder though… x

Ps. Will let you know what happens in 2 1/2 weeks when I go again.

[Miss_Luce in reply to Chaz2010]

Yes, Moorsfield is a very good hospital! I guess it's up to the doctor to decide what's the best for the patient, and I am sure there are million other things they consider that we have no idea about (they did study medicine after all and we did not...) some may have different approaches to the same pathology, as in our case, but as long as we trust them I think we are going be fine.

I am having my first Eylea injection at the beginning of October, will let you know how it goes. Good luck with your appointment!

[StokeySue]

Advice seems to vary between clinics, but can also be tailored to the patient. We had a long discussion of this a few weeks ago, we have agreed to continue with maintenance shots in my "good" eye because I have no central vision in my "bad" eye and I am very prone to bleeds (I have had a minor bleed in the last 2 years while on regular maintenance), and basically I have no spare vision. Advice for a younger person with a properly good eye on the other side might be different, and I think some specialist take a slightly different approach with myopic vs age related macular disease

[Happy242]

Hi,I was diagnosed with myopic cnv 15 years ago. I’ve had many lucentis injections in both eyes, but only when I’ve had active leakage. I understand from moorfields that for myopic patients we respond very quickly to lucentis which drys up the haemorrhage. My understanding is further injections can actually risk added scarring. For me when I’ve had a bleed usually 3 weeks post injection I see a marked improvement in my vision. Hope this helps.

[Miss_Luce in reply to Happy242]

Thanks for sharing your experience. I can say that injections do NOT cause a scarring, the bleeding can, the longer left untreated the more likely it is to leave a scar/scotoma. Injections come with risks, like everything in medicine, I had 4 eye doctors telling me the same: you can have injections as a maintenance treatment so that the eye doesn’t produce the VEGF protein that causes new blood vessels to grow, and potentially bleed.

Now the thing is injections are expensive, it seems the general rule of thumbs in public sector is to only treat active bleedings, it may be different privately.