CNV on Eylea - 38yrs old with myopic macular degeneration

[Apt78]

Helo everyone, im 38 and due to my high myopia (since I was a child) I was diagnosed with myopic macular degeneración since my 20's.

I've had several issues related with my retina and macula over the years. Now (L-22 R-22). Had several bleedings that cured themselves (before anti-VEGF existed) a Retinal Detachment 2 years ago on my R eye and last month started to see a bit blurry and distorted from my L eye, my doctor said it could be a cnv membrane bleeding.

Had a shot of Eylea 10 days ago and nothing improved so far. I had to stop working as my R eye was already damaged from the retinal detachment (I'm an architect can you imagine!!) I just feel very sad and scared about the future.

Anyone had a similar experience? How fast Eylea is supposed to work on myopic cnv?

Please feel free to comment.

[Blessedeyes0511]

Hello, I just got the info that you are following me. I can completely understand. I turned 36 last week and am a general medicine physician. My career depends on my vision and this is so scary. I keep my diagnosis secret at work but have all kinds of gadgets. I carry a lighted magnifying lens and use apps on my phone and enlarge everything on my computer screen. I've had over 16 Eylea Injections. I went from legally blind to 20/40-2/40 bilaterally. I am retraining in a different fief in medicine starting this summer because I love what I do. My biggest fear is not being able to work. Please reach out if you have any questions.

[Apt78 in reply to Blessedeyes0511]

Hi, thanks for your reply, guess our situation is quite similar. I read your posts and felt quite related, I know exactly how you are feeling and I'm really sorry.

I had to stop working for now cause I couldn't handle the wavy vision while looking to drawings the whole day, was driving me crazy. As you, my career depends on my vision. I just hope this Eylea shot (I had the first 2weeks ago but no improvement so far) gives me back some stability so I can go back to work.

After all we are not alone fighting this. Best of luck and let's hope for the best!

[Macular_1]

Hello Apt78,

I am so sorry to learn about your myopic MD.

Here at the Macular Society we have a factsheet about myopic MD which we can send you. Either telephone our helpline 0300 30 30 111 (9.00am to 5.00pm Monday to Friday) or email a request to [e-mail]

You may also find it helpful to have a chat with our helpline.

Best wishes

Macular Society

[Apt78 in reply to Macular_1]

Thank you, i will write to you.

[Bfree]

I am in exactly same position myopic degeneration CNv in left eye that has left scaring so vision is now wavy . I was 35 . I'm 37 now and live in total fear that something will happen in my right eye and then it's life over .

I'm a police Detective so far working without problems but I'm now considered working on light duties because of it . I'm not able to transfer forces because no one will have me with this eye condition. I am stuck and can not move to be close to my partner because of this .

I pray everyday that they work out how to do eye transplants which would save so many lives .. as I feel going blind it a slow painful death .

[Apt78 in reply to Bfree]

I know exactly how you feel, its very depressing and we can only hope that medicine finds a way in the future ...

[Ceri2]

Hi Apt78,

I have myopic CNV too. Although one eye is scarred now, the other is holding out reasonably well (I only ever had 6:12 vision anyway) two years after bleeds started. Despite similar worries around work I am still there several years later. Below is a link that a friend who also has myopic CNV sent me about Eyelea which looks positive. Good luck 🌷

ncbi.nlm.nih.gov/pubmed/257...

[Apt78]

Hi Ceri2, thank you so much for your words of support, they make me feel less alone and am sorry that you've had to go through this too. It’s not easy to find people to talk to about all this (I moved to Spain recently) writing here makes me feel definitely better.

I didn’t want to give up working but it was really difficult being an architect. Having both eyes affected makes me very scared about the future, I just pray this injections work in some way.

Good luck to you too and take good care.

[Ceri2 in reply to Apt78]

Thank you. Good luck to you too. Here's hoping that your injection makes a big difference. Sometimes it's the 2nd or 3rd that help clear it up, so keep hopeful. I really did think it was the end of the road two years ago when the second eye started and it really wasn't 🌻

[kalahuchi]

Hi Apt78,

I've had myopia since childhood and macular degeneration was diagnosed in my 20's, but I was told I'd probably had drusen since early chldhood. Early scarring meant I've only had one properly functioning eye and I've relied on this for reading, driving and working all of my life. Although my eyesight has very, very slowly deteriorated over the years (I'm 58 now) I developed myopic CNV just over 12 months ago and so far I've had 8 Lucentis injections in my left eye, and 4 in my right eye and my vision has improved tremendously. Lucentis was only approved for treatment of myopic CNV a few months before I developed symptoms so I feel incredibly lucky because when this was first diagnosed I was told there was no treatment available and pretty much broke my heart back then at the thought of losing my sight.

I hope the Eyelea works for you and if there is a lot of macular oedema it may well take more than one injection to improve things for you. I think we all fear for the future and one of the most difficult things to bear is the thought of being forced to change the careers that we love and, as a home tutor, I don't know how much longer I will be able to drive and, I already use portable lamps and magnifying aids for my work. I often think about what I'd like to do with my life if my vision does force a change and I've already made modifications to my home to improve the lighting and contrast etc and that has made my life so much easier.

It did me good this week to go to my usual ballroom dancing class (which is, purely by coincidence, held at a local Centre for the Blind) and one of the residents with very low vision asked if he could join us. I was partnered with this gentleman and by the end of the evening we both danced a pretty stylish Samba together! I was amazed at how quickly he learned the steps from guidance and verbal instructions alone. Afterwards I was heartened by the way he confidently walked out of the hall and found his way (he must have known the route quite well) back to his residence.

I suppose what I'm trying to say is that, although it seems like the end of the world, I hope that life is still going to be fulfilling for us whatever happens and I certainly intend to try and volunteer to spend more time around people with very poor vision so that I can remind myself what they can do, rather than what they cannot. I think that may help me to be more positive about my own future and I hold onto the thought that 30 years ago there was no treatment for our condition but now there is. Who know what developments there may be in the next few years so I'm trying to prepare for the worst and hope for the best as always.

Sending my love and best wishes x

[Apt78 in reply to kalahuchi]

Hi Kalahuchi,

Thank you so much for your encouraging words, they mean a lot to me.

Right now I'm in a bad moment because I can't even work. The only thing I can do is hope this inj that I'm starting bring me some relief in the near future.

Thank you also for sharing such beautiful details about your experience helping others trough volunteer. Your story also brings me hope and is great to hear from people in the same journey as you.

Wish you the best of luck and never stop dancing.

[kalahuchi in reply to Apt78]

Thank you Apt78,

I hope the injections work for you too. I had a Lucentis injection last Tuesday and another is due for the other eye this coming Tuesday and so far my vision is holding up.

In all honesty I have dark moments too but I've learned over many years that, although there are things I can't change, if I can do something to help myself, or indeed others, if it's even in a small way, that makes me feel more empowered and generally more positive. Every time I go for a walk and can see the beautiful colours of the sky and the grass and trees I thank God for this treatment that's given me my sight back and while I can see to get about that is everything to me.

The injections are wonderful for many of us so hang on in there and there are also other drugs which work in a similar way if Eyelea doesn't work for you.

I love this forum because we can say exactly how we feel and know that others truly understand what we're going through.

I learned last week that I really will be able to keep dancing no matter what and that has cheered me up no end x