Hello everyone. If you are in the UK, another beautiful day.
This morning I went to the hospital for my regular check-up. I think this is the fourth month in a row that I haven't had an injection. On the one hand, great but on the other I am concerned. Don't want to end up with a massive bleed like I had last year and lose what little sight I have. The doctor assured me that there was no sign of fluid or bleeding. She said that if I notice a change in my sight to phone for an emergency appointment. I am concerned that my sight is so poor, would I really notice a change? Are the injections just for cure and not prevention?
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Bobbie915
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Hi Bobbie
I understand your concern. I too had a break from injections, once for 5 months, once for 4 months. I too felt a little anxious during those months. After the second break the fluid came back very suddenly and with vengeance and I knew immediately that there was something wrong. But you have a point - how will you know if your eyesight is so bad already? Perhaps you would see more distortion, which was the indication in my case. I first saw large dart-shaped spikes jutting out of everything I looked at, coming and going all the time rather than being static like the wavy lines. Then the wavy lines became massive like ocean rollers. I don't know if you can see that much.
And no, injections are not given for prevention. From my own unfortunate experience, they are not always immediately given even in the presence of fluid, but that is another story. I hope everything goes well for you. All the best!
Thanks for the reply, Ayayay. Yes I remember when you had a problem going so long without injection. I also remember you commenting about my news that they were putting my injections on hold. You said something, like, I hope it doesn't mean they can't do any more for you!
I know that the NHS only give injections if there is fluid or bleeding but it sounds to me as if some of our American friends say they don't take the chance of having longer breaks without. That is the reason I wondered if injections helped to prevent bleeds.
It would make sense that since the injections are also said to reduce the new blood vessels they could be used as a preventative. In my case it was not so much the long break from injections as the fact that when they found fluid building up again I still had to wait 4 weeks for my injection. That did the damage.
Ah! I go to Bournemouth, I had been injection-free for 3 months, then I had an appointment where it was noted that I needed an inj but they couldn't do it that day...I waited 4 weeks so a bit worried now. Otherwise all good.x
I haven't gone more than 8 weeks as I keep having small bleeds. I can tell straight away. I notice a new wiggle or a small bump if I am looking at windows or lampposts or a washinglines etc. Always a heartstopping moment. You don't get used to it. I'm sorry to hear your eyesight us so bad that you aren't sure you would notice more deterioration . So worrying.
On a brighter note, yes it has been a beautiful day. I have had a nice day in York.
Hello 2486G. Thanks for your interesting reply. The massive bleed I had in both eyes last year, that did the damage, lasted for at least 3 months. I woke one morning and immediately knew I had lost central vision in my best eye. I got an emergency appointment. The doctor took one look at the scan and went off to find a Consultant, not mine. He was quite blunt and said that eye is finished. He arranged for immediate injections and said I should have a loading of 3. Next visit I was told no injection needed. Then I said I was supposed to have 3 loading injections.. It was not entered on my record!! - but I did manage to get one injection in the better eye. 3 months later I went for my annual eye test and was told both eyes were full of blood and to go to the hospital. I did but nothing was done as I had an appointment for the following week. and was told to wait until then. Sorry for the long moan.
I will do my best to look out for signs as you mentioned.
Your day out in York sounds appealing. Somewhere I've never been but I have been told how beautiful it is.
How frightening for you to wake up and find central vision gone in your good eye. I know how I feel when I see a small ' bump'. My heart goes out to you. The Important facts being missed off your records are very worrying. All adding to your stress. What an awful few months you had. I feel so sorry for all of us that have these dreadful eye issues.
Yes York is a fabulous place. We went on a boat trip and it must have been about 22 degrees. Wonderful. I hope you have a nice weekend. 2468G
Hi Bobbie, I completely understand your fear. After the terrible way you were treated at the beginning it must be difficult to trust your clinic ( did you ever complain to PALS about it?).
All these eye treatments have risks and potential side effects so there is a balance between treatment of active bleed/ oedema and reducing the risks of ' unnecessary' inj. My understanding is that they are all about stabilizing the eye which isn't the same as a cure but equally if there is no active bleed etc then it can be deemed to be working and so no more inj is needed until the next flare up. For me, the longer the gap the better it means my eye is.
However, I have one ' good' eye and you sadly do not so of course your fear is higher and I do think your clinic should be more accommodating of that.
If I were you I would ask them exactly how you are to recognize any deterioration given your current poor sight. If they cannot give you a definite answer I would insist on monthly checkups. Write to the clinic manager and PALS if you have to.
Wishing you all the best going forward x
Ps the gap between my 3 rd & 4 th eyelea was 8 weeks despite returning oedema and I'm sure my clinic said that was a routine gap as opposed to lucentis 4 weeks ( can't be sure though as clinics seem to differ).
Thanks, Eyesright. No I didn't complain to PALS. I considered all sort of options but in the end decided what is done can't be undone. I just hoped they would take more care in future.
Reading your reply, I realise I shouldn't have used the word 'cure' because I know there is no cure, only treatment to stabilise.
I had completely forgotten about the risk of injections!!
I do have regular check-ups, about every 5 weeks. The one very good thing about my clinic is that appointments are always on time and injections, if needed, done at the same time. From home to the hospital takes about one and half hours, so would hate to have to go back on another day for injections.
If it hadn't been for the internet and particularly this forum and the super helpful members, I would still be in the dark.
It is all so frustrating and very concerning waiting for injections. I am now waiting for next eyelea injection and am overdue at 6 weeks. Also still have the remnants of a cyst so even if I get an appt soon they probably won't do it anyway. I do feel for you.
The function of the injections for wet AMD is to suppress the abnormal blood vessels developing behind the retina, stabilise the eye, maintain vision and prevent further damage. Therefore, if the eye becomes stable for a period of time, there will be no function for the injections. However, it is possible that the wet AMD may become active again, in which case further injections would be needed. During these periods of stability, it is important to check an Amsler grid weekly. This will help gauge if there are any changes to the eye, which may indicate if more injections are needed. If any changes are identified, then it is important that the eye clinic is contacted straight away.
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.
Thanks Rosalyn. On several occasions during the months leading up to the loss of central vision, I was told I could have injection or I could wait until next month. Previously, I was always told YES you need injection or NO you don't need injection. I had not noticed any change in my sight and wrongly assumed everything was ok. With hindsight or maybe more explanation, I would have grabbed the opportunity of an injection. We live and learn but I think I paid a high price for something that - in my opinion - just might have been avoided.
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