Macular Society
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First eylea injection

Lucentis not working for me.Just had first eyle is it likely to work as I now feel depressed as I had such high hopes of Lucentis. I am new to this site.thanks

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🙏🙏🙏

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Hi pinkperfection.

I can understand you being depressed. We desperately need these injections to improve our damaged Vision. You will be feeling down.

Eylea gets good results. I can only say this from my own experience and from what I have read other people write on this site.

Your consultant obviously thinks it is worth a try so be hopeful.

It took a couple of injections before I noticed an improvement so don't panic if you don't notice any improvement straight away. Also vision was very blurry initially after the injection.

Hope the Eylea improves things for you and that you start to feel better. It is tough dealing with problem eyesight.

Take care of yourself. 2468G

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Thank you so much for replying, as you say just have to keep going and hope for the best. Hope it works for you.

Best wishes

Pink perfection

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Hi, try not to be too downhearted, eyelea usually works. Had my last one two days ago and still blurry but hoping vision improves soon. All we can do is keeping on with the injections, as long as they are offered to us.

Chin up and best wishes.xx

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Thanks for your good wishes. I love reading and it is my worst nightmare not being able to do the things I want too. Also just retired so couldn't have happened at a worse time. I am however encouraged by the replies I have received. So hoping for the best and hope it works for you.

Best wishes

Pink perfection

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Sending you a hug x

have a good cry ( releases endorphins to make you feel better). Sight problems are known to be akin emotionally to bereavement so be kind to yourself.

There's every chance the eyelea will work so don't spoil today worrying about an unknown tomorrow.

At the same time plan for the worst whilst hoping for the best - this will give you a sense of control which should help - you will find that most problems can be overcome and knowing this will stop the future feeling bleak.

Check out e books where you can enlarge text ( I think libraries offer them as well as Amazon).

Best of luck going forward x

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Thanks for understanding, I am trying to look into audio books and I guess I need to be more positive.

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Just make the most of what you have is all x

I've had a rollercoaster journey so i do understand the depression. Just let it be a wave that washes over you and goes away - don't hang onto it x

Re ozurdex petr mentioned below - it's a steroid implant. I'm on my 3 rd one. There are pros and cons to it. Definitely not to be gone into lightly. My advice is stick with the inj unless your Dr advises otherwise and even then ask lots of questions and get the answers in writing!

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Hi sorry to hear about your experience with lucentis. I had CRVO a year back and vision got worse to 20:80 within 3 weeks. Four weeks after first eyelia I was 20:30 and improving. After 3 eyelia, the doctor switched to ozurdex for even better results. I had 2nd ozurdex four weeks back. To give you the idea of improvement, I had my driving license eye test yesterday and guess what. I read most of the letters on the last line as well. I wish you all the best and hope eyelia works for you.

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Haven't heard of sources is it a new drug?

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Sorry should read ozurdex

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How long do these implants last and do you know success rate for someone with macular edema

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Hi, hope petr doesn't mind me commenting as I'm on line lol.

They last 3 to 6 months. But each successive one has to have a longer gap between so if not working vision can get bad and you just have to wait as opposed to Lucentis/ eyelea 4 weeks gap. My implants, for mac oedema, have each been replaced asap. so I never made 6 months yet - next review in approx 4 months. ( one of the benefits is meant to be fewer procedures, not monthly inj).

A friend had 3 and has been ok for well over a year now but he didn't have many inj either. Don't know any actual stats.

I am currently wary of them as I've already developed cataracts both eyes as a side effect even though implant only in left eye. Think my doc was a bit cavalier with the risk info ( and I've learnt more issues since which i need to get answers to).

Don't want to put you off, just make sure you get correct info. to base your decision on.

I will post my answers when I get them.

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Thank you for your info when I had iluvien implants in 2016 I never thought there was a question they wouldn’t work and they last 2-3 years! So I am very hesitant to try an implant all iluvien did was put steroids in my eyes which blocked me from getting kenalog shots that actually work fantastic on me but I have to wait for implants to b dissolved hopefully that won’t b too much longer again thank you

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Hi. Sorry for late reply as I was away for vacation. The implant lasts between 3-6 months. In my case it lasted 4 months. I had next implant a month after the affect of previous shot wore out. But during that one month waiting period also, I could manage reading, writing, driving and my work without difficulty. It was just a little discomfort. Overall I have been hearing from numerous doctors and websites that ozurdex eliminates the remaining fluid more efficiently and permanently in case of RVO. I am keeping my fingers crossed.

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Dear pinkperfection,

Please contact us on the Macular Society helpline for 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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Hi Rosalyn I am trying to call the help-line at that number - but it says not operating.

What country is this and how can I call direct from usa

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Dear NelleK,

We are in the UK.

You need to ring:

0044 1264 350559

Kind regards,

Rosalyn

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Thanks Rosalyn

Just feeling sorry for myself. Just retired and was hoping to enjoy life then I get MD. So far my left eye is good, do you have any tips for protecting it? I have been taking bilberry lutein and zheaxanthin supplement for quite a while. First injection of eyelea was last Wednesday but not feeling hopeful as four injections of lucentis seem to have made it worse.

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Dear pinkperfection,

I am copying links to our booklets on Nutrition and Protecting Your Eyes and Emotional impact. Please contact us for suppliers details:

macularsociety.org/sites/de...

macularsociety.org/sites/de...

macularsociety.org/sites/de...

It would be worth ringing your ophthalmologist via their secretary to discuss any concerns that the injections do not appear to be effective at holding your eye.

Please do not hesitate to contact us to discuss your concerns further. 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,

Rosalyn

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