So after being in Resp distress and impatient twice in the last month, I was finally able to convince my neuro to try plasmapheresis. I had my 5 treatments in about a 15 day stretch, and I am amazed at how much better I feel. Honestly I do not know how long its been since I have been this strong.

I know that I have to be careful yet not to over do it and to pace myself, buts its been wonderful to be able to climb a flight of stairs without taking a rest and without getting short of breath. Truly amazing changes.

Just a question about pheresis for anyone who has had improvement. How long for you has it lasted? How often do you need maintenance treatments? How long should I wait if I start getting weak again to actually go back in for more? I know everyone's experience w/ this is different, but I would love to hear how it has worked for others.

Thanks!

Jenn

When it was working for me it would last anywhere from 2-4 weeks. usually they will wit until you are weak enough to need it again as many people do not use it therapeautically..usually just when you need it. if you can get ur neuro to order it every 4 that's good. just be careful..it stopped working for me and could have been life threatening on immunosuppressants

I had 5 rounds of PLEX last year prior to thymectomy and it lasted about 6 weeks before I had to start increasing my mestinon dose. Within a month I started IVIG. I wonder how long PLEX would have worked if I hadn't had the huge stress of major surgery. I just had another round last week and felt better the very next day, so much better and faster than IVIG. Since I am seronegative it really is a confirmation of my diagnosis for me.

Tyson, please explain "it could have been life threatening on immunosuppressants". I am not currently on immunosuppressants but know of others who are and who receive PLEX treatments.

Tyson, you really got me interested in the question of PLEX and immunosuppressants since my next step is to treat with cellcept or imuran along with IVIG or PLEX. I found this article regarding combined therapies that seems to indicate immunosuppressants and PLEX combined have a synergistic effect leading to a better outcome. Am I reading it right? I hope the link works.

http://www.ncbi.nlm.nih.gov/pubmed/7453714