Eyesight deteriorated !: I’m disappointed to... - Macular Society

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Eyesight deteriorated !

Annsandra13
Annsandra13
26 Replies

I’m disappointed to be told my eyesight had deteriorated yesterday and my right eye had become more wet.

my appointment on my right eye was moved from 4 weeks to six weeks, I had a feeling things were different , I could see 4 lines less in the eye test yesterday.

I have been having Eyelea injections for last 5 months and up to last month the consultant said I was one of the lucky ones that it was working but did say I needed to

Continue with monthly injections.

So just wondering if any one else eyes have gone backwards, and if there is hope they will start to improve again.

Just concerned the deterioration will be permanent?

Wishing the best for all my friends out there!

Love to all Ann x

26 Replies
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2468G

Hi Ann

Sorry to hear your news. It is beyond disappointing when you hear things have gone backwards.

We all seem to have very different reactions and experiences. Some notice improvements after one injection and others it takes several. We also seem to have different degrees of scarring etc.

It's hard to predict what any of our outcomes will be.

I was told before I started my treatment if Eylea didn't work or stopped working they could try a different type of injection. I wonder if this is an option for you.

My very best wishes to you and good luck with further treatment.

Gx

4 likes
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Annsandra13
Annsandra13
in reply to 2468G

Thanks for your response, I agree with you it is quite a roller coaster ride month by month, i am hoping however the Eyelea will dry up the new fluid build up, so will make sure my injection will stay close to a month as possible. It just goes to show that without the injections our eyesight would suffer.

I have read about the newer injection Brolucizumab, I wonder if anyone has experience with this.

Hoping all is going well for you?

Love Ann x

2 likes
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2468G
2468G
in reply to Annsandra13

Hi again,

I have not heard of that new injection Ann. Something else to Google if I can remember how to spell it.

Yes we have to be grateful there are treatments out there for us. Not so long ago the prognosis was grim.

I'm ok at the mo thanks. Next scan/ review in 2 weeks. Fingers crossed.

Gx

2 likes
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Annsandra13
Annsandra13
in reply to 2468G

We have to be grateful as you say, but so frightening to think we may loose more sight, I am an avid reader and writer!

Good luck with your scan and review, don’t forget to let us know.

Have a good weekend.

love Ann xx

2 likes
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Ayralin
Ayralin
in reply to Annsandra13

Here's info on the new drug: biospace.com/article/novart...

The cost for Lucentis on my billing is $4000 - - what will this one be?? Here is Novartis claim: with the launch of brolucizumab, “Novartis will offset the losses to Eylea and regain dominance in the AMD market.”

We know they are in it for the money! Quote: analysts predict the drug will hit blockbuster status by 2021 and will become “the highest selling drug by 2026 in the wet AMD space.” GlobalData speculates that at its peak, brolucizumab can bring in between $4.1 billion and $7 billion. At the same time, Eylea sales will likely drop from its peak of $2.6 billion to $1.5 billion by 2026, according to GlobalData.”

Interesting.

Linda

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Annsandra13
Annsandra13
in reply to Ayralin

Hi Ayralin, thank you for sending through the info. It quite unbelievable to see how much money these drugs companies are turning over. You have to wonder why one injection costs so much, looking into to the cost of Broclucizumab ( not sure how to pronounce it) it is going to be $10.000, nt much chance in the UK getting that through the NHS.

I am having my left eye injection tomorrow and seeing the consultant so may ask about it, supposedly available by the end of 2019.

I am recovering from flu and still have. Blood shot eye from injection 10 days ago on my right eye.

I hope you are doing ok and eyesight is stable.

Kindest regards

Ann x have a lovely weekend

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Ayralin
Ayralin
in reply to Annsandra13

Hi, Ann,

It is so frustrating to lose our eyesight, while drug companies and health services argue over money, and the $$$$$$ .... here in the USA it contributes to high health insurance costs,etc. Why I support a major change in the system here.

In Sept. 2018, Novartis and Bayer were defeated in a UK lawsuit – brought by a group of NHS organisations – allowing the NHS to continue using Roche’s cheaper drug Avastin (bevacizumab) in place of Lucentis and Eylea for AMD, even though Avastin isn’t approved for the indication. So again - the money, not the patient care is what wins.

My eyesight is stable, after 16 months of Lucentis treatment. I am approaching a 12 week pause in injections due to good response at present.

I do have permanent damage in the right eye - a scarring or buckling of the retina that will likely never heal. My right eye gets the injections, the left eye has no signs of AMD at present. I can drive, but avoid night driving and big city driving - I can no longer read the road signs, so need to be in familiar areas. I can no longer sew, I can't see the detail for hand sewing and I can't see the needle on the machine - frustrating- as I used to do things like volunteer costume design & creation for amatuer theater groups. I am retired as a registered nurse, and had been for 3 years when the AMD began. Good thing! - I would not be able to see for the details work as a nurse! Starting IVs, catheter insertion, or detailed wound care and other duties would be beyond my present capability. But I am very thankful these eye drugs exist - only a short while ago, wet AMD would have meant untreatable blindness.

Best wishes to everyone for continued healing - and keeping as much eyesight as we can!

Linda

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Annsandra13
Annsandra13
in reply to Ayralin

Hi Linda, so lovely to know more about you, I can understand how hard it must have been to come to terms with not able to resume full duties as a nurse and continue with you sewing.

Like you I have the damage to the right eye I doubt will now improve, just upsetting to have a setback but hopeful Eyelea can stabilise my sight.

I too drive on well known routes, I can’t believe I drove through Paris and the Peripherique, it has made me feel quite frustrated as I don’t like being to reliant on lifts etc.

I am a researcher and writer presently my subject is on effects of Climate change and the need for clean water technologies.

I love writing so hope this can continue for many years.

I wish you and all our friends good outcomes on treatment and not to lose hope.

Love Ann xx

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Bobbie915
Bobbie915
in reply to 2468G

Yes, I have read that some people who didn't respond well to a particular injection, were changed to another that might work better for them. One doctor did say that he was not happy with my treatment. I have mentioned this to a couple of doctors at the clinic and the answer was - you are on the best! I have to admit, I have given up hope.

1 like
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2468G
2468G
in reply to Bobbie915

Hi Bobbie915

That is so sad to read. Awful that you feel that way. Can only hope new treatments are being developed soon. My very best wishes to you. Sight loss is devastating.

Gx

3 likes
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eyesright
eyesright
in reply to Bobbie915

Bobbie, I started on lucentis which I was told was the Gold Standard treatment ie best but was switched to eyelea - both to see if a change would help and to hopefully get longer between inj. If your doc isn't happy with your inj why not ask to switch? You can always switch back. Can it be worse than no hope? Sending you a hug X

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pinkperfection

I feel your pain as I wonder just how good some medics are. Nearly everytime I go I see someone different and they all have different views. This is very frustrating and depressing. Try to stay positive easier said than done I know as some days I feel it's just not worth the hassle, but sight is vital and you need to keep pushing them. Good luck.

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Annsandra13

Hi pink perfection, I agree with you everyone seems to say something different, I sort of knew something was different and was really more affected by light for past few weeks too, when I heard that my eye test showed 4 less lines, I mentioned also the reaction to light but consultant said it’s nothing too do with it?

Also the clinics are so busy there is little chance to ask more questions. I will be pushing for apt’s. Monthly now.

We must keep positive, wishing you the best of luck.

Love Ann x

1 like
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Bobbie915

Hello Ann, I googled that new treatment and I can only see a reference to the USA. Perhaps some of our American members will come along with information. Obviously very new so it is probably a little early to hear how effective it is. Best wishes, Bobbie

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Annsandra13

Thanks for your reply, yes I will start doing some more digging on the new injection, I suppose to the future stem cell is the way to go.

I hope you are doing ok?

Best regards

Ann x

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Jannetef
Jannetef
in reply to Bobbie915

Yes it seems not many from Usa

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IvyRose2

Hi Annsandra, I had a deterioration back February, the injections were being spaced out more.However after they increased it back to five weekly, the Eyelea has stabilised it and my vision improved again. Wishing you all the best, try not to worry, hopefully it is just a blip like mine.

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Annsandra13

Hi IvyRose2, Thanks for your message, it is so good to hear your eyesight has stabilised, it seems the Eyelea injections need to be monthly whilst the eye is wet! You have given me hope thank you. What a rollercoaster ride it is with AMD.. wishing you the best of luck!

We are so privileged to be part of a great community that support one another.

My grateful thanks to all.

Love Ann x

1 like
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Getwell89

Hi Annsandra13,

I have had a regression many months ago because my injections were finally spaced six weeks apart. Usually I was getting them every four or perhaps five weeks if my check up proved favorable.

Much to my shock and panic, after the six week span for the next injection, the doctor told me that the fluid had increased and my vision test was not as good as it had been.

We went back to a five week span between injections, and, after a few months of the more frequent injection, my eyesight improved and the fluid had lessened.

So, please take heart and resume the protocol with a lesser amount of weeks between injections. Hopefully, by quickly doing so, you will regain some ground here. Don’t give up! Keep with it, even though it is discouraging many times.

I wish you the very best! Please let us know your progress.

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Annsandra13

Thank you Getwell89,

you have said exactly what I am currently feeling so it’s good to hear that this deterioration can be improved over the next few months, fingers crossed.

I will have to make sure the injection doesn’t got beyond 5 weeks again.

My dearest mum passed away 6 weeks ago so I have been grieving and thought I could tolerate the 6 weeks wait especially as the consultant told me I was making progress last time.

We just have to carry on eating our greens, blueberries and taking supplements and keep on top of apt’s.

Thank you again, your message was gratefully received, hoping you are doing ok.?

Love Ann x

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eyesright

Sorry to hear this annsandra, my vision ( I have brvo with oedema) has roller coasted for 5 yrs. I have a little permanent damage but mostly the inj recover my vision each time. It is scary because we cannot rely on it but even just a few weeks of stabilisation is worth it. Best of luck going forwards x

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Annsandra13

Thanks Eyesright, always lovely to hear from you, I am hoping my eye will stabilise with this last injection not feeling it yet though.

Trying to be positive as really want to keep my independence.

Hoping you are doing well?

Love Ann xx

1 like
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McNaughton

Hi Ann ..... yes... I have injections every four weeks for wet mac (now in my forth year..York UK) if I go five weeks it gets worse...we have tried!!... have already lost central vision in my right ..so very relient on my left...so I can read, drive etc. I now fight for my injections every four weeks... and insist every four weeks .!!! I am not prepared to take no for an answer..... I dont think it ever goes back, it never has for me .... but maybe for some, ?? if it stays steady thats ok by me. Have you still got your central vision.... Polly

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Annsandra13

Hi Polly, thanks for your advice, I will push for more regular4/5 week injections, I can feel quite some difference in my right eye this time so not sure if I have fully lost my central vision, thankfully I have my left eye which has a small amount of fluid but not affecting the macula and I have bimonthly injections. I am still able to read and drive thankfully.

Hoping all goes as well as possible for you. Thanks again love Ann x

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dbjones

I had a year of Eyelea and was OK (could drive and read with glasses). In November over about 10 days eyes deteriorated fast. November to January 2019 could not drive and read with magnifying glass, Kept up with monthly Eyelea- steady improvement - back to normal early Feb. Now able to drive again and read. This month no fluid seen in right eye,injections only every 8 weeks. My left eye went a few years ago - probably cos I was not seen fast enough. So I have peripheral vision in left eye- which also has cataract and membrane but surgery too dangerous to aggravate macular degeneration.

So at 72 I live with peripheral in left eye and quite good vision now in right eye. You can never be certain but still hope. Look after general health. I grossly overworked!

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Annsandra13
Annsandra13
in reply to dbjones

Hi dbjones, wow that’s been quite a rollercoaster ride and so worrying for you, it must have been frightening when your eyesight deteriorated so fast. But wonderful news that it returned to be able to read and drive.

It is reassuring to know that my eyes have a chance to go back, I must say I have been a bit down, I am normally a positive soul. I so want to retain my independence.

I agree that we have to keep as healthy as possible, I am trying but seem to have developed a low immune response.

I do wonder if stress has any effects on eyesight.

Thanks for your inspiring message.

Kind regards

Ann x

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