Scared about receiving anti VEGF injections.

[Britgirl80]

Hi, I've been told I have to have anti-vegf injections. Initially a loading dose of 3.

I had a very uninformative appointment with an RS who diagnosed me with wet MD and have been left very scared and very confused.

I have been told I will start on Ongavia, I am worried about having a biosimilar injection as opposed to Eyelea which is what I presumed I'd be having.

The side effects frighten me so much, that I don't want the treatment. I'm really struggling. I've called the macular society and things have been explained, but I'm still left with a deep seated fear of the treatment and concern that the side effects can be so severe (stroke, detached retina, infection, blindness).

Currently I have very minimal vision changes, my condition was seen on scans and I have mild sporadic distortion but nothing else.

My instincts are screaming at me and I'm just so low, so frightened and cannot process any of this.

I have no idea of any do and donts following treatment (self care, hair washing, face cleaning, etc, exervuse, working). I just feel SO unprepared and SO in the dark about what to expect.

If anyone can share any thing to support any of my concerns, I'd be most grateful.

[Caradog29]

first of all don’t panic! Let’s look at Ongavia - that’s just a brand name. The drug is essentially Ranibizumab. This was originally marketed under the brand name Lucentis and is highly effective. I’ve personally had a number of Lucentis injections. Ongavia will be exactly the same. The original drug is now out of patent and is allowed to be produced by other companies. So don’t worry about the drug itself.

Serious side effects are rare, probably less than 1% and the same as any other anti vegf injections. Far less risk than going blind without the injection. While your vision is not seriously affected is the time to catch it. Mine was cured completely as caught in early stages.

What you can expect is to have numbing drops in your eye before the injection. This will ensure you do not feel any pain from the very fine needle. You will feel slight pressure and that’s it. Afterwards your eye may be red and will feel gritty for around 24 hours. You may see some floaters or dark blobs - quite common.

Dos and donts - not many really, try not to rub your eye. Perhaps don’t shower the first day. I just carry on as normal now. After 48 hours you certainly can carry on as normal.

Please don’t worry at all, none of us look forward to injections but it’s really not as bad as it sounds, and certainly not painful.

You may find this helpful:

royalfree.nhs.uk/patients-a...

[whiskbroom in reply to Caradog29]

I agree totally. Very sensible and calming advice. I've had shots for about 7 years with no side effects and no restriction to my way of life.

[Britgirl80 in reply to Caradog29]

I honestly cannot thank you enough for your reply. When I was reading it, I felt as if a friend was sitting with me reassuring me, and your words, advice, and support have really given me a much needed boost.

I am struggling so much since my diagnosis and the fear of injections and afterwards is making me feel as though I can't cope. I'm sure once I've had my first one sone of it will feel alot less overwhelming.

Once again thank you 🫂

[tomo123]

Britgirl…sorry you are going thought this but hopefully those of us who have gone through it before can alleviate some concerns. My experience started in 2008 with injections after seeing some wavy lines on my computer. I was 47 then and have been receiving Avastin and Lucentis since then.

The injections involve some numbing, cleaning and a fairly quick treatment where you feel some pressure. Makes complete sense to be concerned but I’ve never had any side effects other than an irritated eye for about a day or two after the treatments.

I’ve been given very minimal donts after treatments…no showers on the day, no swimming for a week or so, don’t rub your eye, don’t drive yourself immediately after.

I have seen some more “don’t” recommendations but I am being treated at John’s Hopkins in the US and these are their items.

Other than that, back to normal the day after.

On the most positive side, my vision has been stable and is still 20/20 over almost 17 years.

Hope that helps…take care and let us know if we can answer anything else.

[Britgirl80 in reply to tomo123]

Thank you so very much for taking the time to reply, sharing your experience, and giving me advice. I really appreciate it. Reading other's experiences has really started to take the edge off my fear. The whole situation is so scary to me and I don't have a lot of support around me, so I'm feeling pretty alone in it all. You've really reassured me, so once again thank you 😊

[Lupin1587]

Hi.I would agree with all the above. I've had 30 injections so far. I was told in the early days -2016 not to shower or wash hair for 48 hours after. Not to watch tv or go on screens for a few hours. Keep away from steam in kitchens etc. No swimming gardening or eye make up for one week.

I have dry eyes and was told I can use my drops as much as I want for this and it certainly helps me. Also have some simple painkillers available just in case you need them hopefully you won't. I also try and do something nice for myself after the injections I usually go to bed and listen to some music or meditation to relax. Also get a takeaway. Treat yourself and it seems a bit better! Take care and let us know how you get o.

[Britgirl80 in reply to Lupin1587]

Thank you so much that's really great advice and gas reassured me. I hadn't thought of a treat for the day. My daughter has taken a couple of days off work to fuss around me and we've downloaded an audio book ready to enjoy together.

[Lupin1587 in reply to Britgirl80]

That sounds great. I like an audiobook too or just something nice on the radio. It's a good excuse to have a relaxing day!

[StokeySue]

To repeat what everyone has said, the side effects are not that common and mostly are the result of the intravitreal injection when they do occur. I've had over 50 now, only very minor issues all of which have cleared up

[Britgirl80 in reply to StokeySue]

That's so reassuring, thank you 🫂

[tallyho]

hi there I am an injection buddy for the Macular Society I am happy to chat if that helps if you phone them up they have people who you can talk to who have had injections. I also made a video of what it’s like to have an injection and will post it here if I can it’s just me chatting no pictures it’s a walk through of what happened in the day

[tallyho in reply to tallyho]

youtu.be/2tFF6K1nafo?si=p4V...(Not working as expected?)

[Britgirl80 in reply to tallyho]

I can't thank you enough for sharing this video with me. Hearing a steo by step has helped me to visualise and understand and now I do feel better prepared mentally. I've cried myself to sleep every night since I was told this would be the treatment, abd whilst I'm so very grateful that this is available, the fear has been overwhelming. Before I watched your video I was considering putting my appointment off because I really couldn't imagine I'd be able to go. Everything I think about it I get waves of fear. I'm very eye phobic, so this is hard to overcome. But it doesn't sound anywhere near as bad as the picture I'd built up in my head.

I'm worried about the aftercare as I'm an unconscious face toucher, but I do wear glasses which may help. I'm worried also about touching it in the night without realising but that's likely my overactive anxiety treating what ifs again.

I think at this point I just need it nicer with, the whole process has been so draining that I'm mentally exhausted.

From a sight test to diagnosis in a week has made me feel like my brain has been tumble dried!

Once again, a huge thank you 🫂

[tallyho in reply to Britgirl80]

I made the video as there did not Seem to be another like it glad it has helped. Maybe b eye shield might help you feel less worried just a thought

[SueMulk]

The nurses doing the injection are used to people being scared particularly the first time and are very good at reassuring you and doing the whole thing well. With the anaesthetic drops, it shouldn't hurt. If you have any queries afterwards then just ring the clinic. Like someone else has said, I have very dry eyes and my eyes were sore after the injection but I rang up and was told to use eye drops every hour if necessary rather than the 4 times a day originally specified. I was also advised on how to clean my eyelids with cooled boiled water if I needed to.