Morning, just to update people who might be less far along than I am incase you are interested. Also just to be clear my experiences are limited and based on myopic CNV not wet AMD or dry AMD. So back in April I had a CNV in my left eye, treated 3 weeks later by Eylea x 2- one in May, one in June. It’s been 12 weeks since the last injection and I saw my consultant again this week.
I ve been on a long haul holiday for 2.5 weeks so hoped I wouldn’t have needed anything whilst out there as I wouldn’t know where to turn! Fortunately all was fine and I don’t need any more injections currently.
I’m trained in reading research papers so I know the recent research suggests that the median number of injections needed is 2 for our condition and it holds it in long term studies for 10 years- I don’t think studies have gone beyond this as it’s still relatively new. It’s the newer studies I look at which incorporate the more recent anti vegf injections into them.
Luckily my vision seems ok-20/20 in my bad eye (bit of distortion in the centre remains) but I can’t just about make out the smaller letters and 6/4 in my good eye (corrected with contacts).
However I m aware of some difficulty reading in poorer light conditions and asked my doctor about my good eye. He said there was some lattice degeneration in there but I didn’t think to ask what this means or if this means it ll deteriorate or prompt a CNV in the good eye. Does anyone know more about it? I have searched the internet and it seems a relatively common and slowly progressing condition- hopefully! Any info on this would be gratefully received. I have also asked my doctor for more info…
Many thanks for the supportive group.
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Deepbluesea2022
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Hi Marathongirl. I'm glad to hear that everything was fine when you saw your consultant and that you don't currently need any more injections. I hope you had a good holiday.
I've never heard of this condition (although others on here may well have done) but did have a look online and found a couple of sites, one from the US and one from the UK which explain it very well, although you may already have seen them, but I've left the links below just in case you haven't.
Thanks spring cross. I think it seems like a relatively benign condition and usually doesn’t seem to progress (hopefully)! Thanks for the info. Best wishes
Hiya, I have same condition as you started in September 2017 left eye only , when I was in my early 50s. My optician sent me straight to hospital after an examination , after diagnosis she said oh that’s so rare. I hadn’t heard and knew nothing of myopic CNV just what I read . I was told it was likely that the right eye , my good one would also deteriorate.
In 2020 , 3 years later this happened and I started treatment , in total 6 injections of lucentis which have stabilised the eye for about a year now.
Unfortunately can’t same same for left , I maybe get 4 months max then I need a top up injection to get rid of fluid I’ve had about 32 now and changed from lucentis to Eylea . My job means I pick up slightest changes in my vision and sometimes the hospital struggle to detect it on OCT but I know and a couple of scans later I’m on the injection list.
It’s all very disconcerting and I do keep saying to nurses is there a cut off, how many injections can I have? obviously the worry is scarring every flare up adds a bit more and this worries me . So I wish they would just add me to a list for 3 or 4 month injections given my history , knowing it works but it doesn’t seem to work that way.
Anyway glad things going well keep reading I’m the same hopefully in future there will be a revolutionary new treatment 🙏
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