My story : I was diagnosed with MD 2 1/... - Macular Society

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My story

nanajoymarie
nanajoymarie

I was diagnosed with MD 2 1/2 years ago with dry MD in my left eye and wet in my righr eye. I have been getting Eylea injections in my right eye which stablilzed my eyesight until l now show a slight decline in the right and left eye. I get an injection every 3 months. I take Aereds 2 twice a day. I ear plenty of fruits and veggies and wear sunglasses outdoors. I'm at an impass as what else I can do. Any suggestions would be appreciated.

10 Replies
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Hi nanajoymarie, I had my 4th Eylea injection last Wednesday and my scan yesterday. Luckily the Eylea injections have worked and the consultant was very pleased with the resultsas the wet AMD had all but disappeared.

He said that the procedure recommended now was to have injections every 2 months recommended by the powers that be in the UK. 3 months seems to be a long time; I wonder if your local health authority is trying to save money at your expense?

Have you contacted the Macular Society? They have a wealth of information.(macularsociety.org Helpline 0300 3030 111)

I now have Eyelea injections every 3 months, following the normal pathway. Dr changed from every 8 weeks to 10 weeks, now 12 weeks. Following link gives info:

enhancedvision.com/low-visi...

Hidden
Hidden

Hello nanajoymarie

I agree with what has already been said. 3 months seems a long time. Are you being monitored at least once during that time? You should be, because things can change, maybe not drastically; you may not even be aware of it. Even a small leakage can cause scarring and a little more eyesight may be lost. I do believe that cost-cutting plays a part in this everywhere in the country. Having said sad, the severity of the condition and the response, and therefore the individual needs, vary greatly from person to person.

Originally, eylea was given: 3 loading doses and then 5 or 6 more at 6 weeks intervals for the first year of treatment. This may well have been unnecessary for some patients. Nowadays they seem to resort too much to the "as and when" routine where patients may run the risk of further damage. (I have gone as much as 5 months without an injection.) Also: it can be a nuisance when you think you are just going for a routine scan etc. and then get whipped into the sterile room for an injection.

You ask what else you can do to prevent further sight loss? You are doing already all you can. Until a cure is found for AMD it will always be there. The bleeding or leakage may stop, the swelling may go down, the blood vessels may shrink - but only temporarily. But a cure will come and not too late for many of us. So we have to cling to that hope and not allow our fears to take over. We have to make the best of what we have and enjoy the good things in life.

I wish you all the best.

nanajoymarie
nanajoymarie
in reply to Hidden

You are so right. Living your best life with hope in your heart is all one can do at this point. Let’s all pray for a cure!

Hi nana,

And there’s me who gets a shot every four weeks to control MD. It truly dictates my life.

nanajoymarie
nanajoymarie
in reply to Melene

I was getting injections every 4 weeks at one point. As my vision stabilized they were given every 2 mos. Now I get one every 3 mos. Have hope ! Things will get better !

Melene
Melene
in reply to nanajoymarie

I just saw my first Ad for eye drops for Wet MD to replace injections. I think it was in AARP magazine. Does anyone any info on this?

Rosalyn-helpline
Rosalyn-helplineAdministrator

Dear nanajoymarie,

You are welcome to contact us on the Macular Society helpline for further discussion.

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

Alternately, you can contact us via:

help@macularsociety.org

Kind regards,

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