Detioration between injections of Eyelea 2

[Fattypatty]

Hi everyone, I’m looking for some friendly help. I have been having Eyelea2 injections for two years, these being given every four weeks initially, then every eight weeks. Recently the time between injections was increased to twelve weeks and now towards the end of this period my sight is deteriorating daily, more than I have ever experienced. Has anyone been similarly affected when moved to a twelve week cycle and what happened? Any advice would be appreciated as I am becoming increasingly concerned. Thank you.

[springcross]

Hi Fattypatty. Well it sounds like the time gaps in between injections are too long and I really think you should tell them about it. Can you contact the Clinic secretary and tell her what's going on and ask for advice. It happened to me a while back when I was made to wait ten weeks (from five weeks) and in that time, the leaking started again and became difficult to get under control for quite a while. That's not to say that's what's happening to you but you need it checked out.

If you don't get any joy ringing the secretary, you could contact the Macular Society Helpline on 0300 3030 111 or email them - [e-mail] and ask them for advice.

Good luck, I hope you get it sorted.

[Fattypatty in reply to springcross]

Thanks springcross, I will try to contact my consultant on Monday.

[Jill13 in reply to springcross]

Yes, I think 12 weeks is too long for some people between injections I found 10 weeks was too long for me. Six to eight weeks was optimum for me. I have had vitrectomy ops for macular holes in the past and RS said because of removal of gel from vitrectomy , my Eyelea wouldn’t last as long

[springcross in reply to Jill13]

Yes, I agree. Initially, I went up to 8 weeks over a period of time, but then an ophthalmologist in his wisdom (🙃) said I was to go ten weeks. That resulted in me having to go back to 4-weekly again then five (but still leaking), they then stopped that when Covid started and it became 8 weeks, during which time I had quite a bit of leakage behind the macula but they refused to see me any sooner!!! If I go much longer than 4 - 5 weeks, I get wavy lines and then I'm told there's a lot of fluid behind the macula again. I had a retinal detachment surgery and vitrectomy January 2021 and the retinal consultant said every 4 - 5 weeks from now on for injections but I had a heck of a job getting them and had to keep ringing because the appointments were too long in between. It's been four weeks for several months now (with the help of an optometrist) because they've been trying to dry up the fluid so I could have my cataract done as it was so bad. I had it done last week so I'm dreading having to go back to 6 or 8 weeks again!

[JJnan in reply to springcross]

Yes , it's easy for them to say how many weeks you should wait ..but you have to take what's given...i was told i'm on priority list 🤔in the past i've had to fight for apps...good luck Springcross x

[springcross in reply to JJnan]

Thanks JJnan. Have you had your op yet?

[rosyG]

Agree with Springcross. The timing for me has varied from 12 weeks to 5 weeks so yours needs adjusting. I would ask the clinic fir the earliest appointment telling them there has been large deterioration. They should see you soon

[springcross in reply to rosyG]

Hear hear rosyG.

[Fattypatty in reply to rosyG]

Thanks,will do

[thom3patty]

12 weeks must be too long I agree make that call

[Penelopeflower]

Hello, I too have Eyelea injections, and as others have said always best to mention any changes that you experience straight away, in my experience they normally try and work out after a while the longest you can go between injections without undue leaking, at every appointment I have an eye test and scan, before the injection, which works well in my case, but you yourself will know if something is not right so for peace of mind always seek their opinion. Best wishes.

[Fattypatty in reply to Penelopeflower]

Thank you so much for your advice and best wishes. I’ll be contacting the clinic tomorrow.

[tallyho]

Hello there I am so sorry to hear this. As suggested do phone your clinic. The spacing they have given you is just a trial to see if you can cope with that distance between injections if you can’t then you can’t. I have to have them every 4 weeks we tried 6 and 8 weeks and it was a disaster. So do phone them, if you can give real examples it does help fight your corner for example if you say ‘ I could see this ( whatever your example is ‘ and now I can’t ‘ that would help them understand. Best wishes to you, it’s only under NICE guidance that they say try different time frames so it’s a guidance not a rule

[JJnan]

Hi, yes i am at that stage at the moment, 4 weekly for mths then 5..6..8..10and now 12....i have found it to long as i feel sight has deteriorated to..

Conlsultant explained to many inj means to much scarring,..

a different consultant stopped my inj in left eye after 5 yrs ..and he didn't shift from 8 weeks...out of the blue after an inj he said no more inj due to scatting, no warning....Macular society tried helping by me asking to try going back to 4 weekly as it might work...but he wouldnt hear of it.

.

[JJnan]

I pressed the reply button by mistake ....i wanted to add, i have an app this Fri, i'm eager to see what's going on as i feel sight is worse....good luck xx

[BagelBrent]

Hi Patty! This has happened to me. In my next consult with my doctor I told him how I was feeling. He did a thorough exam and saw that twelve weeks was not working and we went back to an eight week rotation. Please call your doctor and let her/him know about the problems you are experiencing. The doctor will see the leaking during the exam, it will be obvious that the twelve weeks is too long. Best of luck to you!

[Shimano]

Thanks for bringing this up fatty patty. The replies have been an eye opener (pun intended) for me too. I was getting injections every six weeks for my right eye And every three months for my left (good!!!!) eye. In spite of my optician sending scans which I had done privately between injections which showed bad deterioration in the good right eye I had no response and this eye is now much worse than the other. Am echoing the comment of the nhs worker who has been desperately trying to get treatment for a bleed. The stress of trying to get something done is becoming worse than the complaint. Good luck fatty patty.

[NettRoy]

Hello to everyone that is commenting on their injection times, if I may I would like to add my experience, I have gone from my three loading injections, straight to nine weeks ,some of you may remember me saying that my consultant was totally unapproachable, however, at my last app. when he just yelled at the door 9 weeks , I called him back to say that I felt 9 weeks was too long, his answer to me was I quote "This is not a cure you know, we have to extend your injections. " I am not a yes person, and usually have no problem voicing my opinions, but on theses occasions I am scared that he will stop everything, In the six months that I have been going, he has never had a sit down conversation with me.