Since yesterday my trial is over. When I think back how much we expected in the beginning and what hopes we had!
Now one year is over and I have no idea if it was placebo or not? And whether the drug is doing any good at all. In the beginning I didn’t wanted any deterioration, I automatically associated it with placebo. But the drug is supposed to slow down the progression or in the best case just stop it, and it’s very hard to tell.
First of all it is hard to find someone similar to me. To find the same subtype, similar age and stage of the disease is almost impossible. Besides, we are all very different, you can say “how many patients, so many different disease course”. So I don’t know if I am on placebo or not and the worsening that occurred after all would be worse without the drug? So the plan with the trial, to gain time, “to freeze the disease” has not worked. The studies from which I expect something more, (anle138b, ATH343, Sirolimus, Exenatid-4, BiiB101) have either not yet started or there are no results yet.
All those who claim that the tablets have made things better, are definitely on placebo, because the drug promises no improvement at all. Best case is that everything should stay as it is, or slowly(!) get worse. Well, define “slowly.” I have been seen by two doctors in the past two weeks and both are quite satisfied. Phrases like “slow progression” have come up. So I think the deterioration is rapid enough, if that’s a moderate course, I don’t even want to imagine an aggressive course.
I had an MRI at the beginning and now at the end of the study, I am curious about the evaluation.
Whether I got the drug or placebo, I will know at the end when all are finished and Biohaven have made their evaluation, it will take at least until the end of the year. Now I get the real drug, like all study participants. Which is great. The first group in America finished much earlier (we were delayed in Europe because of COVID), and they’ve been on the real drug since August, September, October 2020 – no miracle stories.
All in all, it was important to do this study, but there wasn’t much else left for me to do. An overview of all studies can be found on the MSA Coalition site: HERE
I don’t know many of them. There is also a YouTube post by Professor Gregor Wenning from 2019 about ongoing studies at the MSA Coalition Congress here.
Part of the whole thing though is research, nobody is born with this knowledge. Primary care physicians usually don’t know anything, so it takes initiative.
At least there are a lot of studies. Fortunately. I have heard that about 100 studies are necessary before one is successful and approved as a drug. Well then, I see black for me, or I need a lot of luck.
Yesterday, the TV was on in the background, news on Bloomberg, and I became aware of the name Biogen. I know them, they are currently conducting the study with BiiB101 (which is now paused because of COVID). They are conducting several studies and a compound against Alzheimer’s has been approved by the FDA (The U.S. Food and Drug Administration is the U.S. Food and Drug Administration). This is exactly such a hotly awaited drug. It is not for us, but it creates excitement and brings wind into the world of trials.
I’ll do what I can for now, I understand that it takes time, I JUST DON’T HAVE TIME! And neither does anyone else.