Kristina1
Senior member
- Joined
- Jan 26, 2017
- Messages
- 822
- Reason
- PALS
- Diagnosis
- 03/2017
- Country
- US
- State
- MA
- City
- Grafton
I was in the amylyx trial which ended January 2nd. In this trial, only 1/3 of patients were on placebo. I did feel it was helping me. They are going to do a one year open label extension where everyone gets the real drug. They got it approved with the IRB but we are waiting on the drug itself (I guess they have to make it and send it to the trial sites?). So there has been a lapse.
I have not had the drug since January 2nd. In that time I have felt that my progression is speeding up/worsening. I did also get a port placed the same week that the trial ended, so maybe that stressed out my body and increased progression. But I do wonder if it's because I'm off the drug.
I'm curious to see if progression slows again once I'm back on the drug. Just thought I'd share.
I have not had the drug since January 2nd. In that time I have felt that my progression is speeding up/worsening. I did also get a port placed the same week that the trial ended, so maybe that stressed out my body and increased progression. But I do wonder if it's because I'm off the drug.
I'm curious to see if progression slows again once I'm back on the drug. Just thought I'd share.