Possibility of discontinuing Lucentis injections

[buttercup1]

I was diagnosed with wet AMD in my left eye 2 years ago, since then I’ve been receiving regular (4/5/6) weekly injections and scans.

This morning I had a sight test and scan at the eye clinic and was told that my eye sight had got worse. The doctor explained that it was marginal that I would be able to continue with injections as in cases like mine it might not continue to be funded by NHS. He said that he would try to continue as long as possible. I asked what would happen to my sight if the injections were discontinued and he said that my sight would get worse.

Has anyone else experienced this problem?

[Rosalyn-helpline Partner]

Dear buttercup1,

It sounds as if your ophthalmologist is saying that your eye is nearing the point where it could be designated as 'too bad to treat' under NICE treatment guidelines:

nice.org.uk/guidance/ta155/...

It may be worth using this guidance as a conversation point with your ophthalmologist.

Please contact us if you would like to discuss this further.

The Macular Society Advice and Information Service is open 9am – 5pm Monday to Friday on 0300 3030 111. Alternately, you can contact us via:

[e-mail]

Kind regards,

[rosyG]

I hope they will continue. Sight tests vary from time to time do hopefully you will have improved next visit. Let us know how you get on

[buttercup1]

Thanks for your thoughts, I’m feeling a little bit more hopeful now, I’ll know more when I have my next eye test and scan but I’m better informed now thanks to your wonderful helpline. Wishing everyone a good day.

[Edman777]

Hi buttercup1; Sorry to hear about this. I'm in the USA so our standards of treatment are likely different. Has your doc tried different anti-VEGF drugs other than Lucentis? It is possible that you are developing resistance and need to try another anti-VEGF drug that will possibly offer you a further treatment option. Resistance to an anti-VEGF drug is somewhat common after years on the same drug. Avastin, Lucentis, and Eyela are quite different from each other. This page talks about switching anti-VEGF drugs after the development of drug resistance:

retinalphysician.com/issues...

[buttercup1]

Thanks so much for taking time to reply to me. It’s interesting to hear about resistance developing to Lucentis. When I rang the Macular helpline they also suggested that I speak to my consultant about maybe changing to Eyelea or Avastin. Hope that you’re having a good day.

[Minsue]

My mother was told after having both eyes injected 6 weekly for few years will move to different injection ever 12 weeks? Guess same thing

[buttercup1]

Minsue, Thanks for replying, did the change of drug work for your mother? I hope so!