End Stage wet AMD

[MsDirecto]

I have had great results for 12 years with injections in my left eye. I have had Eyelea and Avastin and Lucentis. Currently on Lucentis and my vision was 20/25 2 weeks ago. I developed wet AMD in my right eye a year ago. I agreed to participate in a clinical trial for either Lucentis or Avastin. It was to compare the results in one or other in the trial population. I don't know which one I got. The leakage reduced and my vision improved initially. After about 3 months, my vision in my right eye began to deteriorate. By June, I had no central vision in that eye and was diagnosed with end-stage AMD. Has anyone experienced a rapid progression to end-stage AMD?

[Hidden]

Hi, I have to wonder why there was a clinical trial for medications that are widely in use...could you have gotten something else? What does your MD say?

[MsDirecto in reply to Hidden]

Because Avastin has to be constituted in the Doctor's clinic, whereas the syringes for Lucentis and Eyelea come pre-loaded, and some insurance companies won't pay for Avastin. It is cheaper than the others and although this a "masked" study(the term now used in the US for "blinded"). I know how to read these things. It's an attempt by manufacturers of Avastin to show that the outcomes for patients in the study were equivalent, no matter which of 2 drugs was used.

I would not have agreed to a clinical trial of an unknown medication, especially since I also was diagnosed with Giant Cell Arteritis and am on prednisone for that. The whole thing was done in my regular retinal doctor's office. The difference was the support staff and nurses were different, patients were tracked and the doctor administering the injection did not know which drug was being used.

Some background: I had been going to this doctor's office for 8 years. (I live near San Diego, CA now, had been in the Seattle area before that.) The head of the practice here was a Doctor T, who was well known in the US and lectured all over the world. He was gentle and easy-going. I loved talking with him because his office was involved with multiple clinical trials.

Unfortunately, Dr. T passed away in December 2019, shortly after this new AMD sprang up. I had had such great results in my left eye over the years that when the new Dr. D took over, I expected I would continue to have the same good effects. I enrolled in the Study in January 2020. I regret it now. Dr. D, who was now clinic director, was a bit younger, rude/dismissive, and rushed in his injections. There were a number of things that made me feel like a lab rat instead of a patient. When my eyesight rapidly degenerated, and I flunked out of the study, he said: "I have never had this happen before." That's all. I think if my old Dr T had been doing the injections, he might have taken me out of the trial and started on Eyelea. Or at least treated me as though I were his patient. Years ago, he had also told me that injections were not the last tool in his bag and that laser surgery was sometimes used if injections fail. Maybe not; there was no further leakage: I just was losing my sight. I was looking for an excuse to transfer to another retinal group and did so in the summer of 2020. When I met dr J, he told me that my chart said had "end-stage macular degeneration." Dr. D. did not tell me that,

I still need injections in my left eye, and if I had stayed with Dr. D's clinic, I am not sure I would have gotten any answers. I certainly would not trust him to do surgery of any sort.