Good news. : After 5 years of Eyelea... - Macular Society

Macular Society

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Good news.

Catseyes235 profile image
19 Replies

After 5 years of Eyelea injections my right eye which was on every 14 week injections has been declared dry so no more treatment needed for now. My right eye is now on every ten week cycle so hopefully it will also be dry eventually. Obviously both eyes will be scanned on my 10 week visits but for now couldn’t be happier!

Future developments of longer lasting injections and implanted medications are great but good to know that Eyelea has had good effects.

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Catseyes235 profile image
Catseyes235
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19 Replies
kohai profile image
kohai

Congratulations, that's amazing news. I for one don't like the injections, so given how I'd feel if I had the same news, you must be over the moon with this result. Fingers crossed it remains dry for you.

Catseyes235 profile image
Catseyes235 in reply to kohai

thanks ... forgot to add that my brother in Scotland with same condition also has one eye dried too now. It will be good news for my sister who has just developed the disease! (Yes 4/5 of siblings have AMD)

kohai profile image
kohai in reply to Catseyes235

Its really reassuring you and your brother had eye dried. Just for your siblings to know that a dry eye result is possible after being wet is something that causes a lot more hope for them and knowing their injections may have the same positive effect.

Catseyes235 profile image
Catseyes235 in reply to kohai

unfortunately there wasn’t the treatment when my oldest brother developed AMD about 20 years ago so he was registered blind and had guide dogs. He sadly died 4 years ago but knew his brother and sister were having injections. Mind you he smoked heavily which is not good for AMD ...or anything really!

kohai profile image
kohai

The treatment available now wasn't available when I was first diagnosed with Dry either (the specialist never spoke of possible treatment) but then the specialist didn't expect it to turn wet until my late 80's, if at all. It turned wet in my early 50's.

A decade after my dry diagnosis my only sibling was diagnosed with throat cancer. He was told there's a bad gene in my family and as my dad's side is small, my mum's side of the family is large, nearly all of my mum's side who smoked gave up. Yet while they're all willing to give up smoking, none of them except for my mum would be checked for dry macular disease.

Catseyes235 profile image
Catseyes235 in reply to kohai

There’s never been treatment for dry macular. Still isn’t. And it’s better that it’s turned wet as that can be treated. Most adults have a bit of dry macular which will be pointed out by ophthalmologists and may or may not get worse ...or become wet. Your siblings will be checked if they visit an opticians. I suggest you take a look at the Macular webinars as they have loads of great info.

kohai profile image
kohai

I already know all of that, and that there isn't a cure ::)

What I posted came out wrong. I've had macular disease a very long time. I meant that the specialist (opthalmologist) didn't mention any "possible" treatments for "if and when" my condition went from dry to wet. He was thorough in a lot of tests, but wasn't forthcoming with info about when mine changes/d from dry to wet as far as treatment is concerned. I don't think he expected it to affect me during my lifetime.

Catseyes235 profile image
Catseyes235 in reply to kohai

because I mentioned the wet mac of both brothers the optometrist wrote to my doc to have me referred to the Eye Unit. When I first went mid year I was free of it but just before Xmas lines became wavy and the journey begins! How many years have you had wet macular?

kohai profile image
kohai in reply to Catseyes235

I was diagnosed in the mid 90's for dry, then March last year specsavers saw it'd changed to wet and got me up the eye hospital really quickly. After 3 loading doses, I was told nothing could help my left eye. Weeks later I lost all central vision in it. My right has scarring across part of it with fluid at the back. I can see long distance with glasses but struggle with detail within a metre of me. So my eyes haven't been wet that long, about 16 months. Luckily I did a lot of research and spoke with organisations on what to expect before my first hospital appointment. I knew once my sight started going it could happen over days, weeks or months, I didn't expect it to affect my sight so much within weeks though. I've been told my right eye is struggling to remain stable with six week injections, but that it is also borderline now prior to being given a CVI.

Catseyes235 profile image
Catseyes235 in reply to kohai

that’s amazing. So you had no indication of anything wrong until your visit to Specsavers? No wavy lines or grey blobs? That’s such a shame. Hope you are managing okay and remaining vision stabilises or improves.

kohai profile image
kohai in reply to Catseyes235

I'd been wearing glasses a previous optical gave me that were mainly magnification. I don't why, but when I look at lines etc with both eyes, nothing seemed wrong. It didn't even occur to me to cover each eye to check the vision separately then. When I first read the chart at the hospital March last year, my left eye could still see the largest letters, but very quickly it started to distort. Knowing how quick I lost my left central vision does scare me, but I have a vision impairment officer now who's teaching me to be more independent at home, and going out with a white cane. Every hospital visit I see a different opthalmologist, some are optimistic, some are straight talking (some don't tell me anything), so I get a general idea i'm on borrowed time with my right eye. It is scary just how quick my left sight deteriorates though. All I can do is prep my home in readiness for when my right one goes. It'll be two years this coming March and nothing positive, like; it's stabilising, reacting well, improving, responding etc has been said about my right eye, even being told I'm close to being issued a CVI tells me my right eye isn't likely to stabilise or improve to the point injections can stop for a while. It would be great if it did stabilise, but I don't have much hope of that happening now.

Catseyes235 profile image
Catseyes235 in reply to kohai

So glad to hear you’re getting help and support. My brother was registered blind (he retained peripheral vision) and found RNIB helpful with the day to day living and the local Macular Society supportive too with outings to go on. He was also involved in a local association for the blind so there's help out there. He did also have 3 lovely guide dogs! Best wishes for the future.

tallyho profile image
tallyho

that’s great news Eylea has had positive results and you are proof of that.

I am hoping to start Faricimab soon as it’s a Bispecific drug which maybe better for my DMO.

Wishing you all the best.

Catseyes235 profile image
Catseyes235 in reply to tallyho

thanks Tallyho....hope the Faricimab works well for you. I watched the Macular Society webinar on it and sounds hugely promising.

Forgot to mention Eylea also worked for my brother who also has one dry eye now. Best wishes.

tallyho profile image
tallyho in reply to Catseyes235

indeed I was on the technology appraisal committee for it which decides if it can be used on the NHS. So I learnt a fair bit about it.

Shimano profile image
Shimano

am so pleased to hear such good news. As someone has already said,it gives you hope. All the best to you.

Catseyes235 profile image
Catseyes235 in reply to Shimano

my brother has also announced one eye dry too!

Penelopeflower profile image
Penelopeflower

Well done, lovely news, i have been having Eyelea jnjections for a few years, and they have definitely improved the wet amd, so it is worthwhile. Best wishes to you.

Catseyes235 profile image
Catseyes235 in reply to Penelopeflower

thanks Penelope. Must say I was not prepared for that when the doc said my eye had been stable for about a year and wouldn’t need injections in right eye as I’d only heard of one person on this forum who had stopped injections.

I had a minor stroke during lockdown in 2020 which set me back 17 weeks without treatment but the right eye remained stable while left regressed to worse than at start of treatment which was scarey but that’s on every 10 week injection now and eyesight improving. All in all a great and unexpected result and proof that Eylea can be very effective and new treatments will hopefully bring more hope.

best wishes for your future treatment!

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