Injections terminated.

[Whitegoose]

Today my consultant terminated my Eyelea injections, apparently my eye with wet macular has not responded to the treatment after having 11 injections. He said in his opinion the central vision has gone and the cells are dead. I asked about any trials I could go on, and he was not interested in about talking about any further treatment. He said he thought it would not get any worse and I would still retain the peripheral vision. Although I have dry in the other eye, the vision is good. And that was it, no more appointments at all. I asked him would I go blind eventually in that eye which had the injections , and he said no. I was then more or less dismissed. Any advice please.

[tallyho]

Sorry to hear this . His bed side manner ( call it that) may not be very good but he has certainly given you a good try of Eylea. He is correct about your sight it should not get any worse and your peripheral vision is not affected by AMD it’s just the central that is affected. You have one good eye so I suspect that is why he is not treating you any more, if both eyes were the same he may well have continued. The brain is very good at compensating with one with good and one bad eye.

[Whitegoose in reply to tallyho]

Hello Tallyho, thank you for the support, I supposed he just felt that there was nothing else to be done. But you never know what treatments will be in the future, I’m lucky to have one eye that’s functions well. I was feeling sorry for my self yesterday after seeing him, so thanks for the reassurance.

[tallyho in reply to Whitegoose]

As I said he has really done as much as any other opthalmologist would do. If it was worth having more injections he would be doing them. Having worked with opthalmologists myself I know a fair bit about the reasoning behind decisions. He has probably gone even further in your treatment thank some others would have done.

[ironbrain]

I'd lost nearly all the central vision in my left eye, and before beginning Eylea injections in my right, I said something along the lines of: "I suppose a retinal transplant is a bit futuristic." I was told: "Very."

[Whitegoose in reply to ironbrain]

Hello ironbrain, I realise now that there is nothing else to be done, he said after 11 injections, there is no change, all the central vision cells are dead. It was a shock, but I have thought about it this morning and as I said to tallyho I’m lucky to have one good eye. I do have dry AMD in that eye, but my vision in it is good at the moment.

[ironbrain in reply to Whitegoose]

Are the cells, the RPE cells, actually dead, or is it (just) the extent of the scarring, or whatever it is, and mess from the bleeding/leaking that's the problem?

[Whitegoose in reply to ironbrain]

Hello Ironbrain, I don’t know if he was referring to the RPE cells. He just Said you have lost your centre vision, and your vision has not changed since having the Eyelea injections. My husband asked about alternatives and he said she’s been having the most advanced of the Injections available. He was very off hand. We asked about trials. There is a new Trial called S.T.A.R. That several hospitals around the Uk that are recruiting for this now. He said it was of no benefit for me. My eye would stay the same. I do notice an improvement after injections. I told him that. But the outcome didn’t change. I did have a massive bleed 12 months ago, and was given another injection at this time to help disperse it and it worked.

[ironbrain in reply to Whitegoose]

I think an implant even regrows the RPE. Haven't read about Adeno-Associated Viral Vectors, so can't comment about S.T.A.R. I guess while one still has one eye, one can wait to see how implant methods, and other treatments if appropriate, develop, rather than being an early guinea pig.

[Whitegoose in reply to ironbrain]

Here is the link on S.T.A.R. Trial

clinicaltrials.gov/ct2/show...

[ironbrain in reply to Whitegoose]

Oh, I was looking at this:

mangen.co.uk/research/our-r...

I think the S.T.A.R. treatment is similar to the one one gets if the blood vessels become polypoidal.

[Whitegoose in reply to ironbrain]

Hi, yes it was started in 2014 and it’s now recruiting for the second part.

[McNaughton]

Hi ...75 ....female. treatment at York Hosp. I have wet mac in both eyes. I have lost my central vision in my right eye ..... but have injections in both eyes every month . This keeps the bleeds steadyish ...... Now had 88. ..... Allthough my central vision has gone in the one eye I would hate to think it got any worse ..... still lots of sight there. Think I would be going for a Second Opinion. Keep positive..... its your sight ...fight for it.

[Whitegoose in reply to McNaughton]

Hi McNaughton, I’m going too, just to give me piece of mind.

[Hidden]

I do not suffer from AMD but I understand that stem cells are being trialled at St Paul 's Eye Research Unit in Liverpool and possibly London Moorfields a are showing promise.

I hope this is not a duplicate because my initial post disappeared!

[Whitegoose]

Hi Rennatk, yes I actually applied for that trial last year, but the recruiting had stopped. The new one is called S.T.A.R. but you need a referral from your doctor, which obviously he won’t give. I’ve been dismissed from any treatment.

[No2020]

Avastin? Lucentis?

Sometimes, a change in meds works.

I would definitely get a second opinion.

[Sukie1903]

I have a similar problem, dry AMD in one eye, and wet in the other with loss of central vision due to scarring. However I've noticed that my brain has started to compensate for the distorted and patchy vision in the bad eye. I still have depth perception , so useful information still comes from it. I've also acquired some magnifying lamps to help with reading.

[Whitegoose in reply to Sukie1903]

Hi Sukie, that’s very encouraging. Thank you.

[pinkperfection]

I am quite shocked to hear this and like others have said I think getting a second opinion is a good idea. I also think this could happen to me as I don't seem to be responding to injections. It seems that the fluid goes away then comes back again after a few injections. They are going to review it in June so just hoping they come up with something positive. I do feel for you as it isn't nice being told you will have to rely on your good eye. The worry is that your good eye may also fail. My biggest fear. Hope things improve for you soon.

[Whitegoose in reply to pinkperfection]

Thank you pink perfection, and good luck.

[Hidden]

I would ask for a second opinion and ask to try lucentis. Maybe cells are dead but you want to be certain its not worsening before you give up. Sending you a hug x

[Whitegoose in reply to Hidden]

Thank you eyesright, I was left with no follow ups. I do realised that if anything drastic happened to that eye, I could go to A&E. The consultant said you can’t even read the first line of the eye chart. I can see tops of some letters but they jump about and it’s only fragmented letters I see.

[tc68]

I had a bleed in my left eye and was getting injections every 4 - 6 weeks in it for 3 years - but my vision has not changed over the past year so I stopped going since I had such a bad reaction after each one. When I look at 3 lines of print - the top and bottom ones are wavy - kind of make a circle. The needles are supposed to "slow down" the progression of AMD - but won't stop it. I'll eventually lose any vision in the center of that eye anyway. But you only lose the center. My right eye is good so I can still manage to read books!

[Whitegoose in reply to tc68]

Hi tc68, thank you, I feel more comfortable with the situation now, I think I was stunned how the consultant told me and his lack of interest to my questions. I know I’m only a number to him, but there was no explanation as what may happen in the future.

[tc68]

He sounds a lot like the guy I see - too busy to talk at all. I live in Canada in the north/central part of B.C. and have to drive 2 1/2 hours to get there - he covers a lot of territory and only does injections one day a week so usually 20+ people in there waiting their turns! Took quite a few visits before I even got him to crack a smile!! It's been 4 1/2 months since my last injection and have seen no change in that eye so I don't think they were helping. The first few helped right after the bleed - but after 3 years of them they eye just kept getting worse - then has stayed the same for over a year now!

[JJnan]

Hi Whitegoose, I'm sorry to hear this, I'm in similar situation, had 5 yrs of 8 weekly injections, (no break)...have wet in both eyes, but only left eye they are giving up on, I to have asked is there anything I could do to help it, and told no....but 1 Doc said it eventually burns itself out !!..he isn't a consultant ..I was taken aback at the time and mentioned it to another who just raised his eyebrows!....has anyone heard of this ?.....wishing you good luck Xxx

[Whitegoose]

I’m sorry that you have these problems, From what I have read since I was told no more injections, if there is no response to treatment they stop the injections. That once the central vision has gone, you cannot get it back.

We live in hope for new research, best wishes. xx