Now that is disappointing!

[Ayayay80]

After my last eylea injection at the beginning of December I was told I did not need any more for the time being. Went for my scan etc on the 9th of January (no consultation). Today I had a letter informing me that I need at least two more, starting at the beginning of Feb at 8 weeks interval. No exact date yet. Well, there goes my break!

What puzzle me, I have mainly been seing two different consultants. Mr A is not exactly unfriendly but is not easy to talk to. He seems to be a "wait and see" man. Mr B is very friendly and talks with me rather than at me. His principle is "if we catch it early we have a better chance". He even mentioned that my cataracts need attention within the next year or so, especially in my "good" eye since the vision in that eye is hardly better than in the bad one, which Mr A seems to ignore. He seems just concerned with the injections although he too looks at the scans. Perhaps that is his role.

I wonder who of the two decides over my treatment or are there other parties involved. Does anyone know how the system works?

[lily0721]

Hi Ayayay80! This is really interesting. Did they explain why the decision was reversed?

[Ayayay80 in reply to lily0721]

Hi lily0721

I have not been given a reason for the change of mind and since I had no consultation with my last scan I had no chance to ask questions.

My treatment regime is "Injections as and when needed". So I am usually booked for 3 injections at a time with scans but no dilating drops immediately before the inj. Maybe some consultants assume that after the third - that this is it for now until a proper scan and photographs with dilating drops a month later reveal the true condition of the eye.

I think that is what happened in my case. It has crossed my mind in the past to stop the injections altogether, but .....

[Hidden]

Hi ayayay. Sorry for your disappointment x

I too see different consultants but I've noticed I see one more than the other so maybe it's just a scheduling thing ( ie if main one not free on the dates I need to be seen).

Each one I've seen has had an opinion and made decisions on my treatment, some have altered what previous one said. But also, the main guy has changed his mind based on how things have gone. The main guy always checks my other eye , the others not so much.

Thinking about it, I see the main man after whenever things have gotten worse and treatment needs to change so maybe thats how they apportion their limited time.

Don't think there's any set protocol, just different drs own ways ( good or bad) and clinic pressures on time/ availability.

Good luck x

[Ayayay80 in reply to Hidden]

Thanks for that, eyesright. I just wondered how it worked as even my appointment letters state whether it is Mr A or Mr B who wants to see me. It doesn't really matter, just a thought. By the way, I "always" have both eyes checked.

Hope all is going well for you.

[Catseyes235]

There has recently been a decision by NICE that those showing AMD through the scan should have treatment. Befire this, if your eyesight from the chart test was good you might not have the injection which was the decision of the Doctor I saw first. However he did set an appointment for following week and his colleague was really annoyed I hadn't had an injection straight away so I did start treatment. . Now with the NICE clarification such conflicting situations should not occur.

I have had two injection out of six without a scan probably based on previous scan. I haven't actually seen any doctors since the beginning but I ask the nurses and they tell me what doc has said. E.g. 'pleased with progress' 'drying nicely'. There are so many in the clinic they just don't have time fir a consult every visit.

[Ayayay80 in reply to Catseyes235]

Thank you for that, Catseyes235. On my very first meeting with a consultant some 18 months ago I was not prescribed injections even though the scan showed a massive swelling. But as my eyesight was still 20/40, so I was told. I would just be monitored. 4 weeks later my eyesight had been reduced to 20/60 and treatment was started. It is quite amazing how much treatment differes from county to county and hospital to hospital.

There is a whole new thought amongst certain medical bodies, for instance, some are trying to get Avastin licenced for eye treatment. The savings on costs to NHS would be enormous. From what I have read this drug, which was in fact the first to be used, is apparently as effective as eylea and lucentis, but with a slightly greater health risk. Time will tell.

[Catseyes235 in reply to Ayayay80]

My brother had a reaction it was thought to Eylea on second injection so they changed to Lucentis but a year later they decided to try Eylea again as what he reacted to was not really clear. He has been fine on that but they were very keen to go back to Eylea. My eldest brother however is registered blind as no good treatment available 15 years ago. Hate the injections but have to tell myself it's better than losing sight! I do have slight dry macular in other eye but so far so good. What are the extra risks with Avastin? With the numbers in Eylea maybe the cost will come down.

[Ayayay80 in reply to Catseyes235]

Avastin is licenced for certain cancers, colon for instance, and is supplied by the manufacturer in much larger phials than would be suitable for eye injections. By request the larger phials will be sent to repackageing companies who will split the larger amount of drug into small phials suitable for eye treatment; the manufacturer so far has refused to do so. This process could cause contamination and cross contamination of the drug and hence the higher risk of eye infection. Apparently this has happened when a whole batch of Avastin had to be withdrawn. Understandably, the producers of Avastin will not accept any claims if eye treatment goes wrong.

Eylea is marginally cheaper than Lucentis. That is probably why most hospitals these days opt for Eylea. If Avastin was licenced for eye treatment the cost of the other drugs would passibly come down. The cost of producing eylea and lucentis need not be anywhere near as high as it is, but the excess money apparently is spent on research.

Yes, we all hate the injections, but what is the alternative? The treatment has worked quite well for me and I am grateful for that. Perhaps one day we will just have to swallow a pill with the same success.

[Catseyes235]

Amen to pill form but guess targeting is the problem. Keep meeting people who have been having injections for years. At least I am in an 8 week cycle now. I asked nurse specialist if anyone stops the treatment and she said if it goes to every 12 weeks it usually means treatment going well. Good luck with your treatment.