Update 18 weeks after 2nd ozurdex - Macular Society

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Update 18 weeks after 2nd ozurdex

20 Replies

Hi guys. Had my review today. Last review showed oedema completely gone but unfortunately it hasn't lasted and the oct shows oedema has returned.

Consultant thinks my condition has become chronic. I'm getting another implant in about 5 weeks and staying on the timolol drops for the raised eye pressure. He will recheck eye pressure a month after next implant.

I asked what if next implant doesn't fix it and his answer was ' there are 3 things we can do for what you have and you've had them all'. He didn't want to say more, told me we have to see what happens, weigh up the side effects etc.

It's weird because I don't have the grey patch so to me things seem ok when reading normally although the distance eye chart test did show I have the blank spot again. Here's hoping it stays at this level if it's not going to disappear.

Keep smiling everyone. I'm off to finish my book x

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20 Replies
rosyG profile image
rosyG

That's disappointing for you Eyesright but 18 weeks is a long time- 22 when you have the next implant.

As long as he agrees to keep treatments going- perhaps rotating different things- hopefully there will be something new to try in time.

2468G profile image
2468G

Hello eyesright. As I'm new here I've read your old posts to see how you arrived at this point. It is such a rollercoaster. Good results one month then not so good another. You manage to sound upbeat. I guess it is the only way to be. Hope there are new treatments on the horizon for you and everyone else here. Very good luck to you. 2468G

Bobbie915 profile image
Bobbie915

Hi Eyesright, although that must be disappointing, it does sound as if you are getting good treatment by someone who cares. Wishing you all the very best.

We appear to be following very similar pathways although we have different conditions. I had 79 Avastin and Lucentis pokes in the eye over 7+yrs followed last Thursday by my first Ozurdex implant. No tangible results for me as yet, I anticipate that the oedema will have gone at my review in 6weeks but I am not confident that my vision will improve. I am assured that if there is no improvement then I will be able to return to Lucentis but that might well be too late to retrieve any vision loss.

My Ozurdex interval is scheduled to be 3months.

How I wish I was comfortable reading a book. My close vision, even when my distant is at its best, is rubbish. I used to have 4 books on the go at any One time but now I can barely manage 4 books a year. 🤢

thom3patty profile image
thom3patty in reply to

Hope it works for you 🙏

in reply to

Sometimes I can't manage paperbacks and use an ereader or laptop where I can make text larger. Worth a try.

in reply to

I have access to a Kindle but, it is just not the same. 🤢

in reply to

Oh I know x that's why I'm reading real books so much now before I can't. Feel for you Rennatk x

At the end of the day though I need the escape the stories give me so I'll take them anyway I can lol

Take care x

123charl profile image
123charl

Hello

I am in a similar position to you and four months after my implant after seeing the consultant his secretary phoned me the next day.. not the appointment booking clerk. She said I had to go for an implant within a few days so the news wasn't good. You can't get better treatment if you had private consultation. I know how lucky i am

Treatment development moves on quickly. I was told 15 years ago I would be blind within 5 to 10 years. How wrong they were so just keep taking whatever treatment you can. Please read my last post and see how they are moving forward and now have transplants you should find this interesting.

I just concentrate on how lucky I am. My eyesight is the only complication of diabetics I have, having injecting for over 35 years. Treatment has already given me an extra 5 plus years and I am hoping for another 5. Good luck for the future and you are by no means alone.

thom3patty profile image
thom3patty in reply to 123charl

If you don’t mind me asking what treatment plan r u following I am a diet controlled diabetic but unfortunately I didn’t know for several years and have eye problems as a result this was 10 years ago and as we all know it progresses I am on eyelea having had 2 injections in left eye (3rd tomorrow) and 2 in right eye (3rd 3/30) then to c how they worked I did have a scan last fri 2/23 and def showed swelling coming down but I am always looking for more options thank you

in reply to 123charl

Thanks 123 charl, the transplant sounds good news for diabetics. I have oedema from brvo so wouldn't do anything for me. Despite looking like a telly tubby I always test as not diabetic ( it's always the first question drs ask me lol).

Rosalyn-helpline profile image
Rosalyn-helplinePartner

Dear eyesright,

Please do not hesitate to contact us if it may help to talk anything through.

Kind regards,

Macular Society helpline

0300 3030 111

help@macularsociety.org

thom3patty profile image
thom3patty

Is ozurdex a steroid implant? I sure hope it works for you I had iluvien implants put in 9/2016 that never worked but still have them in my eyes they should b dissolved at the latest by 9/2019 until then I have to b careful with steroids because they raise my eye pressure and kenalog works great on my eyes but is a steroid how long do these implants last thank you

in reply to thom3patty

Yes it is a steroid. I have not heard of Iluvien, I must investigate!

in reply to

Quick check makes interesting reading. My oedema is not diabetes related but Iluven might be another string to my bow at some point.

in reply to thom3patty

Hi Thom3patty, everyone is different, my Dr said lasts 3 to 6 months. Had review of first one I think at 3 months, then 2 nd implant where 1 st review showed eye cleared up, this review was at 18 weeks oedema back. Next implant in another 5-6 weeks ( he said gap between implants has to get longer due to potential effects). Review after next one at 3 months to check eye pressure ( I am on timolol for this).

thom3patty profile image
thom3patty in reply to

Thank you and good luck

There are 3 potential alternatives to anti-VEGFs such as Eylea etc commencing trials, one in Europe by Novartis and two in the USA. Regeneron is one of the pharmas involved.

sprinter2395 profile image
sprinter2395

There’s only so many steroid implants you can have, as I’m told they can induce cataracts ,the truth is that all these injections are only as good as the person who gives them to you.

I always make sure I get an early appointment ,for my injections ,at my local NHS hospital it’s just like a production line ,they are good but under pressure.

Ive had four steroid inplants the last one although not painful caused a veil and bleeding ,went back three times for emergency treatment ,the veil is still there the blood floaters have almost gone .

I’m taking iopidine drops three times a day timolol twice a day and latanoprost once at bed time.,obviously still up and down to the hospital don’t-know where I go from here looks like I’m just managing pressure...

in reply to sprinter2395

Sorry to hear things havent been as hoped for you either Sprinter. I dont know what the limit is on the ozurdex or if we can go back to lucentis/eyelea when weve had our lot of the implants. Theres potential side effects with all of them of course. Luckily my pressure is managed well by the timolol. Best of luck to you going forward x

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