Timeframe for antivegf injections…

[Deepbluesea2022]

Hello me again! Sorry this is all really new to me. I ve just a week ago had a macula bleed with suspected myopic maculopathy and my health board is slow to send an urgent appt despite me being an NHS worker and being off work with it. They have classed me as needing an appt in a few weeks but I m aware that the anti vegf injections need to be done in a time frame! Can anyone say what the time frame is? I think NICE recommend within 2 weeks. I ve booked a private appt for next Tuesday incase the nhs one doesn’t come through which will be two weeks from the day of the bleed. I feel like I m running out of time! Thank you v much for the support.

[springcross]

Hi Marathongirl. I understand your fear. You could try having a word with your optometrist to see if he/she can chase it for you. I have wet AMD and the timeframe was two weeks, that was in 2018 and even then I had to wait about 3 - 3½ weeks on the NHS. Did you check with the Macular Society at all? Is the private appointment with a consultant who also works for the NHS. If so, he/she may be able to get you seen sooner once a diagnosis has been confirmed. Good luck.

[Deepbluesea2022 in reply to springcross]

Thanks so much. That’s useful. Yes optometrist has chased it. We ll just wait and see and yes the private consultant is the same one as works at my hospital so that’s good too. What did you think I need to check with macular society? The time frame is it? Can I ask did you get benefit from the injections? Or did it keep things stable for you? Many many thanks. This group is fab.

[springcross]

Yes the time frame, things have changed because of Covid and it varies from area to area. Yes I did get benefit from it initially but it was diagnosed late (my fault) so now being kept stable. Good to hear your private consultant works at your local hospital. It definitely is a fab group. You're very welcome. Good luck and let us know how you get on. xx

0300 3030 111

[Deepbluesea2022 in reply to springcross]

Thank you so much. Glad to hear you are stable. How do I contact the macular society? Is it through here? I will keep you posted definitely. I have been a high myope (-12 now) throughout my life but this is the first time anything like this has happened. I ve been more worried about looking out for signs of a retinal detachment!

[springcross in reply to Deepbluesea2022]

I left the number for you on my last comment to you above.

[springcross in reply to Deepbluesea2022]

Sorry Marathongirl, I just realised I left a sentence out of my post last night. I had to rewrite it three times as, for some reason, it wouldn't post but it should have said "I've left the link below" after mentioning the time frame and I obviously forgot to include it the last time. Apologies for that.

[dbjones]

I have had wet amd for 8 years and it has been stable for 2 years with no injection.Prior to that I had injections at various time intervals which kept my sight well. In one eye I cannot see well because of membrane and cataract. They do not operate because it might provoke wet AMD further in that eye. I read and drive well with one good eye and peripheral vision in the other. The brain adapts. For me the injections were painless and effective. I had a very good nurse who gave injections, better than Consultants!

[Deepbluesea2022 in reply to dbjones]

That sounds great. Thank you so much for responding. It sounds like you ve adapted well to your experience and glad things are stable. Thank you again for sharing. Is your experience typical do your think? I m trying to get a best and worst case scenario to manage my expectations.

[Carol_MacularSociety Partner]

Dear Marathongirl24,

Regarding anti VEGF injections, you should ideally be treated within two weeks after initial identification in line with NICE guidelines. I would advise you to contact your consultant via their secretary to obtain an appointment as soon as possible.

macularsociety.org/macular-...

The Macular Society Advice and Information Service is open 9am – 5pm Monday to Friday on 0300 3030 111. Alternatively, you can contact us via: [e-mail]

Kind regards,

Carol

[Deepbluesea2022 in reply to Carol_MacularSociety]

Hi Carol thanks for this. I m unsure who my nhs consultant will be as they haven’t even offered me an assessment yet. I have tried to chase. It will have been 2 weeks next Tuesday that I had the bleed. I have booked myself in to see the consultant on Tuesday privately but unsure if they do injections on the same day as assessments…

[Carol_MacularSociety Partner in reply to Deepbluesea2022]

Dear Marathongirl24,

You can call the ophthalmology department of your hospital and ask which consultant you have been assigned to and obtain the secretary's contact details. You could also ask if your hospital has an Eye Clinic Liaison Officer (ECLO) who may be able to help obtain an appointment for you.

Kind regards,

Carol

[Deepbluesea2022 in reply to Carol_MacularSociety]

Hi Carol yes thanks for this. I have coincidentally just had an email back from the numerous people I ve sent them to. Already emailed liaison officer but she is on AL and also the nhs and private secretary of the consultant. The initial assessment appt will be 2 weeks from the time the bleed happened which I guess might not be the same as 2 weeks from diagnosis but will ask if they can do the treatment same day. Many thanks all x

[KDCH]

I think it depends on the bleed, really. I had my first bleed diagnosed in Feb this year and was sent for injection the next day, as it was massive and directly in the foveal area. I sincerely hope they have assessed your bleed individually - 2 weeks sounds like a very long wait. I would get that critical first injection done privately/immediately if you can somehow afford it! (I do not live in UK, just FYI)…

[whiskbroom]

I live in the US and have been getting regular injections in one eye for about three years from a Retinal Specialist. In my opinion, make as much noise and as many demands (politely of course) as you can so you can begin receiving the injections. I agree with KDCH that getting the critical first injection privately, if you if you can afford it. Two weeks does sound like a long wait. I think it should be "as soon as possible" for you to begin your injections and get on a schedule. Best of luck to you.

[Deepbluesea2022]

Yes happy to pay but still can’t get a private appt before next Tuesday and I doubt they will give me the injection then. I think it is just assessment. It’s so frustrating. I have phoned and phoned and also discussed nice guidelines and everything but think it’s not going to happen. The chasing up and negotiating the system is more stressful than the actual problem almost! It ll be 2 weeks after it happened on the day of the private appt. 😬

[Carol_MacularSociety Partner in reply to Deepbluesea2022]

Dear Marathongirl24,

If you would like to use our advocacy service please call us on 0300 3030 111 to give us your details. We can then try and contact your NHS consultant on your behalf.

Kind regards,

Carol

[Shimano]

Hi marathon girl. You are so right. Chasing up and negotiating the system can be more stressful than the problem. It has caused me great anxiety and I just hate the need to pressurise when I know how stretched the system and the staff are. Having agreed with my consultant thAt, after three years, I now needed injections in both eyes every six weeks I have just got an assessment Appointment with another consultant which is a week after I should be getting my injections. This means waiting for another appointment which could be weeks. My anxiety is through the roof again after feeling it was all sorted out. It is a waste of the doctors time and mine, especially as I have to travel a distance. So I really wish you all the best and hope you get a good result soon. Try to stay cool and keep persevering. The injections really should help.

[doubleorbust]

I was diagnosed with wet AMD in the L eye and dry in the R 18 months ago. Had my first injection of Eyelea within a fortnight - the first of 4 loading doses which is standard practice - at least in my clinic here in the UK. I was delighted to see the retina completely flat at my second appointment which made me feel i was a good" responder". So 3 injections at monthly intervals and the fourth after 2 months then on to 6 weekly review. 2 further incidents followed by injections and was recently put on to 10 weeks review as it was thought to be stable - 7 months no change - but had another bleed within this time. I am disappointed to experience a noticeable deterioration so soon(now only 18 months since diagnosis). Went to the optician for a routine eye test 3 weeks after the last injection. L eye much worse and scan showed the bleed not completely gone but he did say the vitreous was cloudy probably as a result of the injection still and that might improve. My main problems are low light (can't see the coins in my purse for example) low contrast and going from light to shade. I've wandered off topic - sorry for that. Definitely seek out the earliest possible first injection.

Incidentally I only just realised that AMD is notifiable to the DVLA. I'm surprised no one ever pointed that out to me.

The very best of luck to you starting out on this. Fingers crossed you'll have a really good result from injections as many people do. And I have never found them painful - just feel a slight pressure. Not nearly as bad as you think.

All the best

[Deepbluesea2022 in reply to doubleorbust]

Thank you for this. I have a private appt this week so will hopefully get a sense of what is going on then. I haven’t been diagnosed with anything yet so will wait to see what they think. Hopefully they have actually triaged my otc scans and not felt it was that urgent! Fingers crossed! Many thanks all for your support and thanks to Carole too for helping. X

[Diamonds273]

Sooner the better delays can result in damage that is irreversible. 1 week would be a better time frame. I have had wet macular for 7 yrs..and several flare ups.