Injections not helping, Stop?

[PFOhio]

I have been taking my dad for injections for wet macular degeneration in his left eye for two years. They have switched medicine twice and last time went back to the first meds. He had one shot in his right eye that responded right away, and a few months later, a couple of injections in the right and it responded. The left has not responded to any of them and he is getting tired of going. What happens if he stops getting the shots if none of them have helped?

[PFOhio]

I received a response asking why we would quit if it works in the right eye. We wouldnt quit completely but he has only had 3 in his right eye and saw improvement each time. But he's had one almost every month in his left for over two years at $56 a month with zero improvement. He says he is tired of going and they have started to really hurt him. He is in good health but 86 years old. I hate to turture him if it isnt helping.

[ironbrain in reply to PFOhio]

Is the condition in his left eye getting worse? If it were not working, would he not be gradually losing his central vision in that eye? I think for most people, or even generally, it only stops the growth of errant blood vessels and it's then a case of seeing how much the eye heals itself. I was told it's only about 10% that the injections don't help at all.

Have they got the condition stable? If so, would x-ray radiation therapy not be appropriate?

[McNaughton in reply to PFOhio]

He will loose his central vision.... unable to read etc. Try diluted iodine and a good wash out at the end that may be more comfortable for him. I have had injections in both eyes every four, five weeks for four years.

[Hidden]

You have to ask yourself, although you say there is no improvement - is your dad's condition going to get worse if he stopped the injections? You don't say how bad his vision is in his left eye. If there is a lot of scarring his eyesight is probably never going to improve with our present treatments but they may be able to stop or at least slow down progression.

[PFOhio in reply to Hidden]

Thanks. I am encouraging him to continue treatment but he has a couple "friends" who told him the treatment made their eyes worse. At each appt the dr either says his left eye isnt any better or it is slightly worse. I think we may have waited too long to get him seen. His right eye has gotten better quickly with each treatment. He does have underlaying diabetes which is being treated with a daily pill. He also has modiate dementia but is able to live on his own. I got him to agree to going back in April or sooner if he notices any vision changes.

What should he look for?

[Hidden in reply to PFOhio]

The earlier the treatment is started the better the result though there is no cure at present. Injections do not repair damage already present, but they can prevent or slow down further deterioration. Occasionally, the appearance of cataracts or other complications have been blamed on injections, but with diabetes he is prone to them anyway. I believe the injections do more good than harm, despite what his friends say. Does he have regular check-ups?

What he needs to look out for is more distortions. It is always a sign of fluid build -up. Also: deterioration in eyesight, dark patches in his field of vision. If he notices any changes at all it should be checked out immediately. Tell him not to wait, because more damage can be done. He should check his eyes himself regularly. Get him an Amsler Grid, which you can download from the net. He can trace the lines with a pencil and compare them week by week.

April seems a long way to wait.

Hope that helps.

[StokeySue in reply to Hidden]

I think if possible you should ask the doctor administering the injections *why* they think it’s worth doing the injections , because they wouldn’t do a delicate and expensive treatments if they didn’t believe there was some benefit.

I have injections every 10 weeks. I don’t see any improvement after each one but I really find it worthwhile because the injections have maintained my sight (or sight loss) at the same level for a long time. When I started having injections I had them because I had retinal bleeds and oedema, and I did see an improvement when the injections worked on those problems and resolved them. I do not want another bleed, they are scary and always remove some sight, so for me maintenance / prophylaxis is best.

[Hidden in reply to StokeySue]

Hi StokeySue, You are addressing the wrong person, preaching to the converted, I would prefer to have regular injections despite the unpleasantness, but our clinic does not work that way and I can only take what is offered to me. Twice now I had a break from injections for over 4 months, not my choice. No maintenance or prophylaxis here. It is a wait and see game at our clinic. Sooner or later the fluid always comes back and only then do I get an appointment for another set of injections, 2 at the time, usually followed by 2 more or however many it takes to dry up the fluid again. I call myself lucky that my visual acuity has not permanently changed much since I started treatment two and a half years ago, though it tends to be up and down a bit, probably due to the irregular treatment. I do have regular OCT scans & check-ups every 6 weeks and also sometimes just before injections. I never had a bleed, only fluid leakage. Perhaps that is the reason for my treatment being different from yours.

[StokeySue in reply to Hidden]

I’m not a UK NHS patient

[PFOhio in reply to Hidden]

Thanks. After posting this I realized dad has been going for these monthly injections for at least 3 or 4 years. I am confused because the doctor always insinuated that he expected dads eyes to have shown improvement, and switched the treatment multiple times because his eyes hadn't responded to the treatment. It seems that everyone on here thinks the treatment isnt supposed to improve his sight, just slow down further damage. I don't know what to do, dad doesnt want to go back because of the pain and the fact his eye hasn't responded. He actually believes it's made his eye worse.

[Hidden in reply to PFOhio]

Hi PFOhio

The injections do not as a rule improve eyesight; they may however slow down the process of losing central vision. Occasionally my vision becomes totally distorted when everything looks out of shape like cartoon drawings. Even my other eye cannot compensate on those occasions. Injections have helped to temporarily eliminate the awful distortions, so in that respect it could be called an improvement, but my visual acuity has not improved. If anything, it is slightly worse than it was 2 years ago. Any scarring, damage caused by bleeding or leakage, cannot be reversed. Of course we all respond differently to injections, but I do not think that it is the injections that would make your dad's eyesight worse. One of my consultants told me that it would get worse in time. Why does your dad have "monthly" injections? Is he on avastin? Perhaps eylea or lucentis may work better for him, but unfortunately, these drugs are far more expensive, but he probably would need fewer of them. I can understand that he does not want to go through the pain every month, but as long as there is any sight to be saved, he really should continue.

Wishing you both the very best. .