Eyelea schedule

[Bobbie915]

Hi Everyone. My hospital has informed me that I will now be having injection every 3 months instead of 2 months.

I am concerned because a few years ago I was told my eyes had not changed for 18 months and I was being put on wait and see. For about 4 to 5 months at check up, I was told I could have injection or wait until next month. I wrongly assumed that meant it wasn’t urgent. Previously, a doctor would say, no injection today or yes you need injection. I ended up having a massive bleed in both eyes. Lost central vision in one and the other badly damaged.

Now I am worried that I could loose what little sight I have left.

With the routine being changed with lockdown, we no longer see a doctor to ask questions.

Anyone else having the same issues?

[springcross]

Hi Bobbie, nice to hear from you again but sorry to hear the reason why. Mine isn't as bad as that yet but it's creeping back up. I had retinal surgery for a detachment on 12 January and was told that my Eylea injections would probably have to be every four week afterwards. I'd had a vitrectomy too and was told that the cataract was getting bigger also. I had my Eylea injection two weeks ago today but was told that my next appointment was going to be six weeks and I queried that, not only because I was told it would probably be four weeks after the surgery but because I know that there will be leaking there as it was quite active, according to the consultant on my follow-up after the retinal surgery, but there then seemed to be a change of opinion (different person). When my appointment letter came last Friday, it was for seven weeks and I was absolutely furious. They did this to me last year in April by making me wait eight weeks twice and that caused more damage which ended up worse than when I was diagnosed. I ring every day to see if there are any cancellations so that I can bring it forward to six weeks but no joy.

It seems that the nurses, ophthalmologists and injectors have been changed where I go and they are very matter of fact and don't seem to care, unlike before when the same staff were seen each time - are you finding that's what's happening where you are? I have heard other people saying the same thing where I go also.

Yours is very upsetting Bobby and I can understand why you are worried, as would I be. Maybe you could ring the ECLO at the hospital and ask for help with it or maybe contact one of the administrators here (Becky maybe) to ask if they can advise you on what to do. I wish you well with it Bobbie, it's such a worry and unfortunately, I feel that staff no longer seem bothered or seem as though their hearts are in it any more. Please let us know how you get on. All the best. xx

[Bobbie915 in reply to springcross]

Thanks Springcross. As if we don't have enough problems already. I think Rosalyn's advice is sound. Apart from my sight, I also have a hearing problem and I hate talking on the phone to people I don't know incase I don't understand them. I am hoping my daughter will phone for me. I have just lost my husband and my daughter has been my lifeline. Don't know what I would do without her.

[springcross in reply to Bobbie915]

Oh Bobbie, I'm so very sorry to hear about your husband. I know he wasn't well but that is so sad, my deepest condolences to you and to your daughter, it's good you have her. I agree that it's a good idea from Rosalyn as you really do need some help with this and it seems that if you don't ask, you don't get. I hope you get some joy Bobbie and please keep in touch and let us know how it goes. Take care and all the best. Thinking of you. xx

[RosMacularSociety Partner]

Dear Bobbie915,

It would be worth you contacting your ophthalmologist via their secretary and asking if the decision to extend the time between injections is clinically determined, explaining your concerns. Then, please get back to us for further discussion.

Kind regards,

Advice and Information Service

0300 3030 111

[e-mail]

[Bobbie915 in reply to RosMacularSociety]

Many thanks Rosalyn. I will let you know what happens.

[Hidden]

Springcross and Rosalyn are right - definitely challenge. If treatment is to be changed as the patient you should be kept fully informed as to why.Good luck xxx

[Bobbie915 in reply to Hidden]

Thanks Eyesright. They did say in the letter that my eyes are stable. That is the first time in all the years I have been having injections that Ive been told that. Before lockdown, one doctor did tell me that my eyes have never been dry since Ive been having injections.

[Hidden in reply to Bobbie915]

Good you're stable. Keep checking weekly with an amsler grid so you can flag quickly if anything changes x

[Shimano]

Gosh Bobbie, no wonder you are worried. I do hope you get some good attention and help soon. I really feel for you. Kick up a fuss, even though it is hard to do, especially in current circumstances. Good luck.

[Shimano]

Hello Bobbie and springcross. Your posts echo my own anxieties about not having information re changes or lack of treatment. Like Bobbie I am recently widowed with no family nearby and feel very isolated though my daughter is supportive. My optician has been a lifesaver. I go for regular scAns privately and she has twice contacted the consultant for an urgent referral when fluid has built up in my left eye. It is worth £30 a scan to every 6 weeks or so to have some idea of what is going on in my eye and to feel there is someone who will support me if necessary. You must be very anxious and in not a very good place to cope having lost your husband recently. I think I do have some idea how you feel and send very best wishes for you to come through this really bad patch.

[Bobbie915 in reply to Shimano]

Hello Shimano. Many thanks for your reply. I have been thinking of doing exactly the same as you and getting an OTC scan locally. It would be reassuring to get an independent opinion. Will get that organised. Thanks again.

[springcross in reply to Shimano]

Hi Shimano. I have only just seen your post and wanted to say how very sorry I am to hear that you have lost your husband, it really is so sad to read this. I'm glad your daughter is supportive for you and wish you all the best. I'm glad to hear that your optician is looking after you and your eyes so that must be some relief for you. Take care. xx

[Shimano in reply to springcross]

Hi springcross. Thankyou for your kind wishes. It has been hard loosing my husband and then getting diagnosis and injections. Unfortunately, my left eye has also gone wet so I am up for a loading dose plus my usual. If pain relief was effective for me it would be easier to bear. However, I know I am far from being the only one in this situation and many are worse. Roll on treatment by tablet!!!! I hope you are enjoying the sunshine as much as I am. Xxx

[springcross in reply to Shimano]

Hi Shimano. I'm sorry to hear about your left eye now wet, it never rains does it!! It must be awful for you having to have injections in both eyes as I know that it's really painful for you. Yes, roll on treatment by tablet, I agree. All the best. xx