Reply To: Two flair-ups since October

February 17, 2023 at 3:04 pm


I had the first flair up in October.  Around December 1st, my insurance cut off further IVIG treatments due to lack of medical necessity.  I don’t think I was all the way recovered and the lack of IVIG lead to another bout in mid January.  I was on Cellcept and 40mg daily of Prednisone during the period.  My doctor tried 5 days of solumedrol before I went to the hospital but it actually made me worse.

I definitely think the shingles vaccine set my immune system into overdrive.

As to plasmapheresis, here’s my hot take on it. : )

-it is much more cumbersome compared to IVIG.  There’s the port in the neck, there is the 5 treatments, every other day, so at a minimum you are in the hospital for 10 days.  My blood pressure cratered after the 3rd treatment and I passed out and remembered waking up to 5 nurses working on me.

-where IVIG gives you faster results, plasmapheresis is painfully incremental.  It is definitely working, and 3 weeks out, I’m still progressing, very slowing in the right direction.

Getting the bad antibodies  out of my system is probably the right thing to do, and now it looks like my doctor has convinced the insurance to okay IVIG for 6 months, starting next week. He’s hoping these back to back treatments with their different approaches will put and end to this episode and also help alleviate most of the remaining numbness and difficulty walking.

His goal, was as well, to get me off the IVIG and have Cell-Cept be the main medicine.

Maybe that might work if I avoid any more vaccines ; )