Diagnosed with AMDoctober 2017. Had first Eylea injection November2017. After second injection my sight improved and was almost back to normal, but following the third injection after one week my sight deterioted though not as bad as before my first injection. I have now had a fourth injection but it has not improved. My consultant said further fluid had accumulated under my retina.
Will further injections help or will I continue to have further leaks.
I find it depressing. Has anyone experienced this and had a good outcome
ODTL
Written by
tottloh
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First of all as far as injections helping I would certainly continue with them. You don't say whether you have it (wet AMD) in one or both eyes. I had a similar experience with my first 3 injections albeit with Lucentis rather than Eylea. I have wet in my right eye and dry in the left. The fluid in my right eye disappeared completely after my third injection. I was asked if I wanted to stop the injections or carry on for another 3. I decided against having more as my eyesight was very good and was not affecting my day to day activities in any way. However on returning 8 weeks later for my review the fluid had come back! I regretted my decision at the time, but as the consultant told me that even if I had carried on with injections at the time it could have come back at any time anyway.
I am now 27 injections further on now (Eyelea) and the fluid still persists! However it is not impacting me in any way other than my prescription is getting a little stronger, and I have early stage cataracts. I know full well how disappointing it is to be told that the fluid has returned but don't get too down over it but keep on with the injections. Your consultant may decide to try Lucentis at some stage if no significant improvement. As my consultant said different people have different outcomes. Some people achieve a complete cure, others don't and lose their central vision or worse. I would place myself somewhere in the middle and if the injections are keeping me there then I'm not complaining!
Keep positive and try not to get too depressed as its early days yet, and keep in mind that there is significant and promising research taking place worldwide all the time.
Thank you for the encouraging words. I will try to be more positive but sometimes it is hard to stay upbeat. I have wet AMD in the right eye and dry in the left. My vision in the left is very good at present. Thank you again
It is prettty depressing if you let it get you. I know my vision is not going to get better so it’s the loss of driving etc although my doc tells me stories of miraculous recoveries and I have a 93
year old friend who needs an injection every 4 months or so. So I am the jealous-type too. What I did to combat all these negative- not helpful feelings was to start a low vision group. We meet once a month and share horror stories. (painful injections, non empathetic mds), information. We get speakers when we decide we need some expert on assistive devices,, or take afield trip to the assistive device store. We even trade these on ocassion.. mainly we laugh a lot. Believe me, some of the stuff people bring up in the group is pretty hilarious .
Hi, ohlewis
First of all, don't let the thing get you down. I know it is scary and unsettling at the beginning. No one can predict how it will pan out for you, as the severity of our eye conditions and how we respond to treatment varies from person to person. The fact that after the first 3 injections your consultant had given you the option to have more injections or stop them is promising, although now you say that the fluid is back. At present there is no cure, but your condition can be stabilised and your consultant is the best person to judge how often you need treatment. Be guided by your medical team.
In my case, after the first 5 injections I did not need any for 5 months. Since then I have been given 2 appointments at the time in the hope that it may dry up again, but so far it hasn't happened again, but I have now a whole 2 months interval between the injections.
So, do not get too depressed. As time goes by, and you learn to understand your condition better, you learn to accept things for what they are.
We note your distress and uncertainty about your treatment, which is understandably leaving you feeling low.
As regards your treatment for your macular condition, nobody can predict the future course of this for you as an individual other than your specialist. He or she is best placed to advise and will only recommend it if considered appropriate and beneficial.
However, we can offer you some support as a Society, as we have a telephone counselling service for which anyone with a macular condition can enlist. Read more here:
You would need to ring us on our Helpline: 0300 30 30 111 so we can explain more, and gain your consent before referring you to this service.
You may also be interested in going to a local Macular Support group to meet others with the condition who will be understanding and supportive. We can give you a local contact number if you ring the Helpline.
Just to make you aware, we are currently offering free 6 month membership. This is a good way to keep up with current developments. Please ring us if you would like to benefit from this, or join via the following link:
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.
I've had twelve injections over three years as although the injections clear up the fluid it always seems to return. I believe it's always going to be like this.
Thank you to all who left me encouraging posts. I am more upbeat following contact with you all.
Ohlewis
Hi ohlewis, sending you a hug x You're in the early days of dealing with your diagnosis and it's hard so be kind to yourself. It's known that the emotional impact of sight problems is comparable to bereavement. The macular society have an excellent helpline, info and support groups so do check them out.
Everyone responds differently but there is every chance the inj will stabilize the eye. You may need regular inj to achieve this though. Try to focus on the positive aspect - your sight is not worse than at the beginning.
Best of luck going forward. This forum is a great place - you are not alone.
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Confusing consultation today! All views welcome- sorry for long explanation but hoping to pick your brains please
Very confused
How will NHS Eye Units manage to catch up ?
Debilitating eye injections
Delay in second loading injection
