Hi everyone,
Just to say you that I stopped photopheresis treatment after 4 sessions.
I started feeling really weak after the third session and wanted to have a fourth to see.
After the fourth session, I wasn't able to stand up and needed a whelchair to come back at home. I ended up in severe crash during 5 days (in dark room not able to talk and very difficult to eat and drink).
My internist doctor advised me to stop the treatment. It was a very difficult time because I worked so hard to access it.
I am now at home in my severe baseline condition.
There is no side effect about the treatment itself, but i was drained after each session.
The stamina was affected and sleep too.
I haven't noticied any effect on my symptoms (cognitive dysfunction, constant head pressure, sore throat, PEM).
After testing several immunomodulatory drugs/treatments (high dose prednisone, imuran, photopheresis), it seems that my condition is driven by an other mechanism.
David