Receiving monthly Avastin injections now 5 days past due and I notice a decrease in vision

[Edman777]

Being treated for CNV. Somehow, I was given a 5 week follow up form my next injection so instead of receiving my scheduled 4 week injection last week, I will get it this week. My vision was getting better and I was able to read things I couldn't read before. Yesterday my vision wasn't nearly as good and today it is a little worse. Seems like a lot of my visual gains have gone away. This has me discouraged and concerned. Any of you folks notice vision decrease after a delay in your anti-VEGF injection? Thanks.

Edman

[springcross]

Hi Edman. I have wet AMD and have been having Eylea injections for over two years now and I had this problem five months ago. There are two long posts about my experience of being left eight weeks on two or three occasions when I should have been having injections five weeks apart. My last injection was 15 October and the doctor, after looking at my scans, said there was more fluid there than in March. I explained about all the hassle I had five months ago and that I knew it would come to this and that my sight now is worse than when I was diagnosed. She said I was to go four weeks for the next appointment and then five weeks until they could get it stabilised again. When my next appointment letter came early this week, it was for five weeks. I was furious. I rang the appointments office and told them what the doctor had said and was told that they didn't have any appointments to offer me unless I wanted to go to another clinic in another area, in which case they could offer me four weeks. I accepted this and I'm hoping it will be OK as I don't know anyone there. I understand that Covid has caused all this but I am wondering if it could maybe have been handled a little better.

I wouldn't worry too much about your sight as it's only been a week's delay and probably as soon as you have your injection, your sight will return to how it was prior to the week's delay, but if that doesn't happen, then ring them and let them know. It is a worry though and I can quite understand how you feel. All the best and let us know how you get on. x

[Koalajane in reply to springcross]

I have to say I had this before Covid and things have greatly improved since!

At one stage I rang the consultants secretary which worked like magic

[springcross in reply to Koalajane]

Thanks for that Koalajane. I did try that during the time mentioned on my above post and a woman who shares her office answered and said she wasn't there but that she (this person) would get someone from the team to ring me, no-one did and when I rang back, she had gone and the answer machine was on telling people to ring a certain number which just happened to be the number I was listening to the record message on!!! It was a real shambles.

[Edman777 in reply to springcross]

So I got my Avastin injection. Waiting 5 weeks caused fluid to start building again. The OCT scan was quite telling. I received another Avastin injection and within a few days I could literally see the fluid beginning to reduce(my scotoma got smaller). My eyesight has improved in that eye to where it was. My doc now realizes that the Avastin isn't working as well as it should and is trying to get me approved for Eylea. I should know tomorrow if I've been approved. Edman

[springcross in reply to Edman777]

Good luck with that Edman, I really hope you get it. I had mine yesterday (Eylea) and was told that the fluid was no better than four weeks ago so it will be four or five weeks for the next one. I asked the doctor if it will go back to what it was like before the lengthy wait, he said sometimes it misbehaves but then gets back on track. Not long after I got home I had a telephone call from the woman (optometrist/opthalmologist) who discussed the scan with me, who said that the computer she was using had not updated whilst she was with me but it was now showing that there has been improvement from a month ago and she just wanted to let me know, also that they would still be keeping it at four to five weeks for the next one. I hope it's four weeks not five. Good luck for tomorrow, let us know when how it goes. x

[fed13]

This is all SO deja vue fir me. It is a continuing saga how us ophthalmology patients can't get appointments in the time frame dictated by our doctors. In the time frame we need. They do not realise , or are ignoring the fact, that there is no capacity. The poor booking team personnel are always getting it in the neck for not booking our appointments in time. There just isn't the capacity. I've said it many times before and will cheerfully say it again, write to your consultant and send a copy to your Health Authority.

Keep writing. Do it now. No, you won't get penalised for complaining. You can put it very nicely; beg for extra clinics to be run; send a copy to the head of booking services asking for their help. It would be a nice change for them instead of being cursed.

Let us know how you are getting on. When I ran up against an unsympathetic brick wall on one occasion the Macular Society came to my aid. If you're told no-one else has complained, (not obvs. by M.S.), that's probably not true, or they jolly well ought to be complaining. Don't be a mouse. We're all in this together! All the very best xx

[Becky_MacularSociety Partner]

Good Morning Edman777,

When you go up for your appointment this week, bring it up. Make sure you let your consultant know too, whether you do this by talking to them at your appointment or by contacting them via their secretary's phone or email. Of course you can write a letter, but this takes a lot of time, especially as the Royal Mail is facing delays at the moment.

Let the know as much as possible and find out if/who the Eye Clinic Liaison Officer (or ECLO) is at your eye clinic, so if your next appointment is delayed, you can contact them to try and bring it forwards for you.

All the best,

Becky

[Hidden]

Hi Edman.

Here is the good news from my experience with Avastin...but remember it is MINE and may very well NOT be the result for your situation;

I was forced to skip all injections for almost a full YEAR.

My wet eye did bleed but was brought back under control once I was able to continue injections.

I DID notice a lot of gained sight lost during that time.