Had my review today after 5th Eylea injection. The consultant was very pleased and also a little surprised how quickly and well my eye had responded to treatment. So for now, the injections have been stopped, although he said, as if so by the way, that my eye sight is as good as it isl ever going to get and that it would go on deteriorating. He has referred me to the low-vision dept at the hospital, yet at the same time he spoke of removal of cataracts within the next 2 years, so he must still be optimistic. (I wonder if I am still alive by then; if not, well, then I need not worry about cataracts and AMD anyway, lol). I will be monitored on a 6 weeks basis.
What I would like to know (the one question I forgot to ask the consultant) is, how long will it be before the neovascularisation flares up again. I know it varies greatly from person to person and cannot be predicted. I would just like to hear from other sufferers how they fared when their wet AMD dried up and the injections stopped. It seems no longer practice to keep the injections going to discourage further growth of blood vessels. Nowadays it sees to be a case of "if and when required" even at the risk of sudden leakage and more scarring and hence more loss of vision. It has possibly something to do with cost-cutting. Anyway, I am glad to have a break from those awful injections; I just hope I do not pay for it later.
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Ayayay80
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that's great news !! My friend stopped injections about 18months ago and is fine- but as you say, everyone is different. What is your vision like now? Hope it continues to go well for you
Thank you rosyG. Was your friend's eye condition wet AMD or something different? And what was her age? I am 80. Not that age should make all that much difference in this senario.
My visual acuity is 6/15 or 20/50 in both eyes, though only my left eye had the 'wet' AMD, so my vision is not too bad. Reading is becoming difficult and reading OS maps on my 8 mile hikes across the countryside is now impossible, so I print out my own magnified maps and rely mostly on my trusted GPS when exploring new areas for our walking club. Anyway, I am due for new specs, so that will help me even more.
Yes it was wet AMD and she is 70 years old - I hope you to can maintain the improvement you have had. You sound very well organised and getting on with everything as usual!!
Thanks again rosyG. I am as organised as I can be. My friends call me an inspiration, which I am not. Just an ordinary bod who plods on the best way I can.
Great news ayayah, so very pleased for you x I think if you keep checking weekly with the amsler you will be able to flag any new deterioration before more permanent damage occurs.
Thank you for that, eyesright. I will indeed keep checking the Amsler grid. It has become some sort of a way of life. I will also go on reading the posts. Over the past year I have had support from so many of you kind people especially at the beginning after my diagnosis when I was really in need of advice and encouragement from people who shared my dilemma. I thank you and everyone else for that. This forum has become almost a new circle of friends for me - sad, isn't it! And I hope I have given support and understanding to others in a small way.
I hope your seemingly endless troubles will also be resolved soon. Again, a big hug and a Thank You from me.
I am also a member of the Health Unlocked Atrial Fibrillation forum and have just come back from meeting a group of members in London- people do become actual friends through the forum I think!! Three people travelled in from the West Country which was great but its usually those of us within about half an hour's travelling time!!Everyone discusses what's been happening health wise but they didn't like the sound of eye injections!!!- so I didn't say much about them!
Hi Ayayay80, so pleased to see your injections have stopped it is such a relief to have time off from them. Mine dried up for a couple of months but then leaked a little so I was put back on the injections to try to stop it . Last of the 3 Lucentis next week so I am hoping that will stop it for a while again.
Good luck to you Ayayay long may it last for you. x
Thank you, SYLKE. Sorry to hear that your break from injections was so short. But this is exactly what I am trying to find out. As I already said, no one can predict how long it will be before the condition becomes active again. It is just good to get some guidelines and meanwhile hope for the best.
How many injectios did you have before the respite? Do let us know what happens after this latest batch of 3 injections.
I hope you will get another rest from the mini-tortures. Good Luck!! xx
Thank you Ayayay, I had 6 before the respite and now another 3, my consultant did think he might change to Eylea if it doesn't work. They do keep reminding me I am lucky but I really don't feel it when I am laying on the table in that room I would rather be at the dentist! lol xx
Oh I don't know, SYLKE, I am no fan of dentists either, but I know what you are saying. I guess we are lucky really, because before the days of injections people just were left to go blind.
The function of the injections for wet AMD is to suppress the abnormal blood vessels, stabilise the eye, maintain vision and prevent further damage. Therefore, if the eye becomes stable for a period of time, due to the abnormal blood vessels being successfully suppressed, then there will be no function for the injections. However, as you have acknowledged, it is possible that the wet AMD may become active again, in which case further injections would be needed.
I have copied the link to our Treatments booklet and our Essential guide to wet AMD:
Please do not hesitate to contact us if we can be of any further help. The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.
Thank you Rosalyn. While I have become quite well informed about the ins and outs of AMD, the one thing I am still trying to figure out is - how long may it take for the vascularisation to become active again. I know it varies greatly from person to person; I would just like to establish known time spans.
I am very greatful for the work you are doing and you have been eneromously helpful to me personally. I sincerely thank you for that.
I am afraid that I am not able to usefully comment on time spans. Obviously vigilance and rapid action are the best form of defence when it comes to wet AMD.
Last year I went from May to the following January not needing injections after it dried up. Have just started a course of 3 injections as there are signs of bleeding.
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