Has anyone had any experience with a Clinical Trial Study?

charley0419

My wife was on one for about 2 months , meds/placebo saw nothing going on and figured better on a meds by her Nurologist that may at least slow down

M1

Two months is too short of a time frame to expect to see any changes Charley. There are lots of excellent trials out there, with the advantage being free care and early access to promising therapies that are not yet available to the general public. Not all trials include a placebo arm, some compare new treatments to other "standard" treatments. There are no oral therapies for Alzheimer's currently that prevent disease progression, so it is unlikely that the neurologist will have much to offer. If she is very early, she might be a candidate for one of the IV therapies, but these are very expensive, difficult to administer, and rarely used.

Let us know how her neurology appointment goes.

charley0419

i know 2 months not enough but I didn’t want to make her an experiment, felt 2 yrs long time to be on nothing that’s why I took her off. Neurologist just put her on meds. My DW has anosognosia forsure. Stopping her from driving she can’t let go of it.

Windsock

https://alzconnected.org/discussion/comment/188742#Comment_188742

Charley, i totally understand your thinking on these trials. I have to weigh quality of our lives Vs the time commitment to travel the 1.5 hours to University of Washington to participate in a trial. My DW can still travel so want to make the best of this time in our struggle with this disease.

ThisLife

My H was in three clinical trials from 2015 to 2021. One was med/placebo. The other two were low dose/high dose/placebo. Don't ask me which drugs they were, I didn't keep the records. I do remember that two were to clear amyloid plaques. For one he had to also have the Tau Tangles which he did.

The last one the company paid for the high dose for anyone who completed the study period. He finished and was getting the high dose for 6 months before we moved out of state.

H was about Stage 4 when diagnosed and is now mid Stage 6 in ten years. I suspect that the clinical trials maybe helped slow the progression. His skills have decreased faster since we discontinued the trials. Initially, he wanted to do the trials to help the research. Further along, he thought he was going to be cured. Finally, he wasn't wanting to do the infusions and was confused about why he was having them.