TO: Our Family
We finally got the appointment to begin the clinical trial on Amylyx
0035 on Monday. Phyl will be the forth person anywhere to take this
experimental drug. It seems the first three people to get it from UMass
Medical found the taste horrible. The company has redesigned the drug
to taste better (we hope) and they are ready to continue the treatments
again. It is a powder she mixes with water daily. If you want to read
about the drug, see:
Phyl is a bit worried about her potential reaction to the drug. It is
composed of two other drugs that have been tested on humans individually
but not together. Most people have tolerated the two drugs but some
have had nausea. She has a very sensitive stomach and expects to react
badly (that is if she doesn’t get the placebo)!
They hope to signup about 150 participants in the trial from all over
the U.S., with 50 getting the placebo and 100 or so getting the drug.
She took one of the approved ALS drugs a few months ago and reacted badly.
The neurologist at UMass Medical, Robert Brown, seems pretty high on
this drug so we are trying to be hopeful.
Prayers are welcome….. love to you all.