New here, Myopic Macular Degeneration when... - Macular Society

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New here, Myopic Macular Degeneration when to get off avastin and on to eylea and what to expect?

MikeMc
MikeMc

Hello all

I'm 34 was diagnosed about 3-4 years ago. I'm -19 booth eyes I had my first Cnv (bleed) in 2016 and it held off for a while. The second bleed was in my left eye and left scaring. But this year things have really ramped up i've been having to have shots every month bouncing back and forth from left to right. I just had an injection 6 days ago in my right eye and need one in my left that will be done in a few days. But since that last injection i had one day where i did not notice the blood in my eye. I can see it as a sun spot thats noticeable when blinking. I now have had another bleed in that same eye. I have asked my Dr when should we consider getting off avastin and he said its still working as it should just that the Cnv have been flaring up. It seems to me that either the cnv are happening more often or that the avastin is now starting to not to work.

I also have really no idea how to plan for the future. It seems that this degeneration is just random and could all of a sudden make me legally blind. I have asked my Dr if i will go blind he said NO! But i don't really know what to expect. As i'm sure Dr consider actual blindness to mean something different than us laymen If i can't work and i can't see things centrally i don't really know what to expect from life. I own my own business and just this uncertainty is making me second guess every thing i do and every minute i spend.

5 Replies
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Oh dear! I'm so sorry. Try contacting the Macular Society, 0300 3030 111. macularsociety.org

I feel for you, and wish you the very best.

Hi Mike,

I have myopic CNV too and was treated with Lucentis (very similar to Avastin) for a couple of years; the injections got closer and closer together until they were monthly in both eyes and fluid was persisting between injections. I had to fight very hard for access to Eyelea.

Eyelea is much more expensive than Avastin, so I suspect your doctor will keep using Avastin until fluid persists despite monthly injections. Eyelea is licensed in the UK now for myopic CNV and I switched in January. If your CNV is "flaring up" and the Avastin isn't controlling it, I would start arguing pretty forcefully for switching drugs. It may also be a good idea to call the Macular Society helpline on 0300 3030111 as they will advise you and also offer an advocacy service.

Switching to Eyelea has given me a very welcome 4 month break between injections, but I need treatment again now. I fear for the future too. The Macular Society and my local Low Vision Centre have been great in helping me to make the most of the vision that I still have but there is always the nagging fear of how bad is this going to get. I've also been told myopic cnv doesn't lead to a total blackout, but I also know others who are very badly affected by central vision loss. Overall I'm glad I can't see into the future; best to take each day as it comes and worry about the future when I get there.

Again, if you just want someone to talk to about all this, the Macular Society really are great. 0300 3030111.

I hope you get a break from the injections soon x

Sending you a hug x I'm sorry everything is so up in the air. As has been suggested, the Mac Soc are a great support and understand exactly what you are going through. Best wishes moving forward.

Hi MikeMc.

Sorry to hear you are affected by CNV at such a young age. It does have a big impact on your well-being and of concern for the future. I also have CNV in one eye due to myopia. I am being treated with Eylea which is working for me at present. I was told if it didn't work they would try an alternative which I presumed would be the case for everyone but I'm guessing your are not in the UK.

I hope you will have the option to try Eylea. Very best of luck to you.

Rosalyn-helpline
Rosalyn-helplineAdministrator

Dear MikeMc,

Please contact us on the Macular Society helpline.

The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

help@macularsociety.org

Just to make you aware, we are currently offering free 6 month membership. This is a good way to keep up with current developments. Please ring us if you would like to benefit from this, or join via the following link:

macularsociety.org/6months

Kind regards,

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