Too good to treat?

[MikeG1944]

Seen in another post, is this really true? Surely it's better to treat a disease in the early stages to stop it getting worse than to wait till it's bad.

Could this account for the apparent change in my schedule for Eylea injections? I was originally told that I would have 3 injections a month apart. The first one was done within a week, then the next 5 weeks later, and after asking why I hadn't had an appointment come through for the 3rd one after 4 weeks, and being told they will sent when they know, I received an appointment for 8 weeks since the 2nd one.

I luckily have better than 6/6 vision in both eyes at the moment, albeit with some wavy lines in the bad one, and have very early stage Wet AMD in the bad one, so could this be the reason I wonder.

Has anyone got a link to this new legislation?

Thanks, Mike.

[Bobbie915]

Hello Mike, I have not heard of any new legislation as far as treatment of AMD. As far as I am aware, the normal would be a loading of 3 injections, approximately 4 to 5 weeks apart. After the loading injections, a scan is done and if there is no fluid or bleeding you will not have injections. Afterwards, monitoring will be done every 4 to 5 weeks. Injections are only given if there is any fluid or bleeding - and never less than 28 days since the last one.

When I Googled for information on stages of AMD, I read that if it is wet, it is already at the late stage.

I am no expert on the subject and probably like a lot of others, only find out details by searching and reading the experiences of others on this forum. You should be able to ask questions during your monthly check-up. Good luck to you. I wish you well and hope you have a smooth journey.

[MikeG1944 in reply to Bobbie915]

Thanks for your reply Bobbie915. I guess I will have to wait till my review after the 3rd injection and the tests they will do again before I'll know for sure if it's stopped the bleeding. It has made a small improvement so I think it's working. I started to ask a question of the consultant at the 2nd injection just before I left and was told bluntly 'your procedure is over' so made a hasty exit. I realise they were very busy that day with a lot of people to see but it did sound a little bit off to me. The doctor who did all the tests was very helpful and would answer all your questions so I'll have to wait till I see him for the results.

With regard to NICE and their rules they have apparently already banned eye supplements on the NHS so it wouldn't surprise me if they were more stringent on the rules for the injections costing what they do.

[Hidden in reply to MikeG1944]

Hi Mike. I saw that too. It was from the Mac Soc I think, maybe they will post us something about it ( or ring them if you're concerned it's been applied to you). I agree with Bobbie, the loading dose is 3 usually spaced 4 weeks apart.

Re not getting info on inj day - it's the same at my clinic. Ours have 15 min per inj and have to get a certain number done so absolutely no time for anything else. Only get info on review days ( and then have to ask questions, they don't often say too much).

Good luck going forward.

[MikeG1944 in reply to Hidden]

Yes eyesright, I think that was the reason; too many people to get through; there were around 20 more to see when I went in. The first time there were only 3 or 4 of us. The review will be the time to ask and they'll have more info after the tests.

[fed12]

Where I am (Macclesfield), they're obviously swamped! I have to battle nearly every time when my injection appointment is due, and the Macular Society have often helped me by emailing the Consultant on my behalf when even his secretary is unable to help. Too many people for too few appointments!

My and the Macular Society's, and I hope other patients' pleas have resulted in extra clinics being organised, (weekends/Sundays/bank holidays?). I feel sorry for overworked staff. There are exact timings for injections, as said, i.e. 3 loading at monthly intervals, and then 1 every 2 months. Ideally you should be given a protocol.

Sometimes my injections have been late by up to 10 days, sometimes I've been bunged in right at the end of a busy clinic. I am not the only one to this happens to. It occurs all over the place from what I gather.

[Hidden in reply to fed12]

I have a similar problem with appointments, being placed on the "as and when protocol". I only get 2 appointments at a time, then a review, and then a wait for the next step. I never know when the next appointments come after each set of 2 injections, which makes planning ahead very difficult. I too get slotted in, sometimes on a Sunday and sometimes at the end of the day when the staff are tired out and most have already gone home.

[Hidden]

Almost 2 years ago now, when I first was diagnosed with wet AMD in my left eye, the consultant was reluctant to give me treatment despite the massive macular swelling. My visual acuity in that eye at the time was 6/12 or 20/40. He insisted on calling it dry AMD while the tests clearly suggested otherwise and I was told so at one of the tests. 4 wees later my vision had deteriorated to 20/53. This same consultant told me that "we can start treatment now as NICE stipulates that vision has to be worse than 20/40 before treatment should be given". And as I said, that was 2 years ago.

Since then I have had regular treatment with a 5 months break in between that period. Occasionally I see another consultant, I'm not sure whether he ranks higher or lower, but he believes that even a small leakage should be treated for a more successful outcome. So it seems it depends on the discretion of the consultant. I have been placed on the "as and when required" routine. So far I have not had another break from injections, but they have been extended to 2 months intervals. My vision has never returned to 20/40 or better.

I know the costs to the NHS are enormous and I suppose it is cheaper to allow thousands of people to lose their sight. What a sad state of affairs!!!

[MikeG1944]

Thanks for your reply ayayay; that could explain the delays in my treatment; luckily mine is apparently very mild but I would like to keep it that way. It will be very interesting to see what is said at my review. The doc who did the tests was keen to have it treated, even though mild, and my 1st injection was within 1 week. Hopefully I will see the same chap again in a couple of months. Perhaps the consultant who did the injections looked at my notes and thought my eyesight was too good to bother treating me?

[Ceri2]

Hi Mike, The link to the revised NICE guidelines is on the Macular Society website, scroll back under news . The Society describe it as opening the way to treatment before sight drops to 6/12, but not a guarantee that clinics have to. It suggests that the guidance is giving consultants more flexibility to treat earlier, so potentially worthwhile fighting for. Good luck.

[MikeG1944 in reply to Ceri2]

Thanks for that Ceri2; took a little while to find it so here's the link for others who may be interested...

macularsociety.org/news/nic...

[Macular_1]

Hi Mike,

Other posters have given you good information and advice.

If you would like a chat with the Macular Society helpline, please call us on 0300 30 30 111 (9.00am to 5.00pm Monday to Friday).

Best wishes

Macular Society

[MikeG1944 in reply to Macular_1]

Thanks Macular_1, I have all the info I need at the moment from your excellent publications on here, and the other members experiences, but if I need any info urgently I'll certainly give you a call.

Mike.