Hello everyone,
I had plasmapheresis prior to my thymectomy in April. The surgery went very well, but now some of my symptoms have returned, post surgery, and I am considering plasmapheresis again. I was just wondering how many foks have had plasmapheresis post surgery, or plasmapheresis without having had the surgery. How often have you had it? I am debating starting cellcept after the plasmapheresis, to see if that will be helpful. I would greatly appreciate any comments that you could provide regarding your experience/side effects with plasmapheresis and/or cellcept. Thank you in advance!

I have been taking cellcept for almost 4 years and my symptoms are not as bad now.

I have also been taking immune globulin infusions for the same amount of time.

No way to know if one or the other or both is responsible for improvement.

If you do decide to take cellcept, I sure hope it helps.

scrubbs

Scrubbs

Did you see increasing improvement over time or was it mostly initial improvement has been maintained?

The first year, no improvement. Second year, maybe a little.

The last 18 months I have been considered stabilized. My symptoms were still fluctuating but are less severe.

Less fluctuation in symptoms the last 3 or 4 months and would only consider these last few months as being stable.

But I still seems I continue to get weaker.

I have read a lot of members posts that have had very similar treatments, but none that replicates my experience.

scrubbs

Hi lurleen,
I've been taking Cellcept for almost 5 years without any definite effect...
My base treatment has been Pred, Mestinon and regular PLEX since December 2009 (1 exchange every 40 days now).
Pred has been tapered from a max of 75 mg/day, Mestinon pretty well stable (5 or 6 x 60 mg/day) and PLEX every 10 days, then 2 weeks, then 3...aso as my condition was improving.
I tried IVIg twice without success.
Maurice.

Thank you everyone for your kind replies. It has been very helpful!