Wet Macular Degeneration Newly Diagnosed - Macular Society

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Wet Macular Degeneration Newly Diagnosed

20 Replies

I was diagnosed 6 months ago... one eye... caught it early and my vision is excellent ... so far.

I had 2 Eyelea injections over 2 months and that kept me going for 4 months. I've just had a 3rd injection and it frightened me... not the actual injection but the diagnosis again

Once the injection has been found to work will it always work? Can i relax in that knowledge. I suppose there isn't a 'plan', or a set pattern, we are all different.

I've been quite relaxed about this for 6 months but now I feel anxious.

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20 Replies
Bobbie915 profile image
Bobbie915

You don't say where you live. In the UK it is normal procedure when diagnosed, to have 3 loading injections over a period of 3 months, followed by monthly scan and check-up. When I was first diagnosed with AMD I was completely unaware that there was dry and wet - and how serious the condition can be. I thought I had pretty good sight and was only concerned by the thought of having injections in my eyes. Some people seem to go on for years maintaining reasonable sight with regular injections. It is a lifetime treatment. I haven't been one of the lucky ones - I lost a great deal of my sight 18 months after starting treatment. Wishing you you the best of luck. Bobbie.

in reply toBobbie915

Thank you Bobbie. I was born and lived in UK for 65 years. Now live in Melbourne. I too will be followed up for life.

Bobbie915 profile image
Bobbie915 in reply to

I had a feeling you were not in the UK. I have no doubt you will get good care in Australia. My daughter used to live in Brisbane and was very happy with the medical care. She is not impressed wit NHS!

Your treatment appears to be working well for you. Keep up the good work and all the best for the future. Bobbie

kevinaki profile image
kevinaki

>google "eylea injection spacing"

“The recommended dose for EYLEA is 2 mg administered by intravitreal injection every 4 weeks (monthly) for the first 12 weeks (3 months), followed by 2 mg once every 8 weeks (2 months).”

see also: eylea.com

________________________________________________________________________

Bobbie915 profile image
Bobbie915 in reply tokevinaki

Quite right Kevin. My first concern was it didn't appear that the first 3 loading injections had been done.

in reply toBobbie915

I had 3 injections so far.. 2nd one 4 weeks after 1st and 3rd 8 weeks after that due to previously booked holiday and excellent response to first 2. Review Now in 8 weeks.

Seamus1 profile image
Seamus1

I am on injection 22 in left eye and 17 in right eye, eylea has stabilised my sight. I now have the jabs every 4 months. Good luck and be positive 👍

in reply toSeamus1

Thank you I will

Catseyes235 profile image
Catseyes235

I have come across one person whose condition dried out and no longer has injections but obviously has yearly checkups. My eye doc (UK) quoted the statistics last week of what percentage respond/don’t respond well to treatment and I can’t remember at all ! but was just delighted I am now on every 10 week treatments for both eyes. If treatment successful the gaps get longer! Hoping to go to twelve weeks eventually.

You never really get used to the injections but hopefully you’ll get good results after your loading injections. My left eye responded really well to Eyelea after one! Best wishes

in reply toCatseyes235

Thank you. I was climbing the walls with discomfort after 1st injection but better now i know what to expect and i have eye drops to help. I too had great result from 1st injection. Keeping fingers crossed for us all.

Catseyes235 profile image
Catseyes235

I get Superdrug moisturising drops (but one get second half price .. cheapest around and always like a bargain!) and use new one for each treatment. I use as frequently as necessary along with a couple of paracetamol if needed. Make sure the iodine is washed off as much as possible as it is the iodine forming crystals that can irritate. I also like to have cooled boiled water to wipe any crusting gently away. You may know this already but I have met people who don’t realise they can help themselves after treatment and think they just have to suffer for a day or two!

in reply toCatseyes235

Thanks. I'm in Australia. The Specialist does the injections himself and so far he's great and he gives me eye drops. Then he charges me $700!!! Hahaha.

Catseyes235 profile image
Catseyes235

Oh dear! What if people can’t afford it? I do love our NHS!

in reply toCatseyes235

It's tough. They can be referred to the hospital but there's no fast track for that and injections are done in Melbourne at the hospital. So its an all day job

I worked in the NHS for 20 years. Too much waste... Too many managers... too few paying for too many. It can't be sustained.

Catseyes235 profile image
Catseyes235

No I don’t agree. Yes there is waste and that can be addressed but

I’d hate to see a system where some actually many, went blind (with the long term financial implications) because they could not afford treatment. I could not afford treatment and nor could my brother who died last year... he was registered blind as no treatment was available 15 years ago. My other brother is also receiving treatment in Scotland and could afford for a while but not long!

in reply toCatseyes235

I don't agree either!!

The waste is never addressed

You would afford the private health here. It costs no more than paying the stamp there.

It's about budgeting. People who get lung cancer ... for the example ... and don't have health care have made a choice... we all have choices.

Catseyes235 profile image
Catseyes235 in reply to

Sorry but what choice have people with lung cancer made? Are you blaming people for their medical conditions? Not all lung cancer or cancers in general are a result of smoking. Smoking is not acceptable but drinking is and all the women I know who have had breast cancer drank wine but in an ‘acceptable’ sense. Maybe you’ve just been lucky health wise and financially.

in reply toCatseyes235

If u can't work that out.....

RosMacularSociety profile image
RosMacularSocietyPartner

Dear Medsec2000,

Please ring us at the Macular Society Advice and Information Service for discussion. We are open 9am - 5pm Monday to Friday.

Kind regards,

RosMacularSociety profile image
RosMacularSocietyPartner

Dear Hidden,

Please contact us at the Macular Society for discussion.

The Macular Society Advice and Information service 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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