Reply To: Treatment options

December 24, 2013 at 8:23 pm

Plasmapheresis versus IVIg/SCIg
From my non-medical view, the bad (GBS/CIDP) antibodies are already in your bloodstream while you are being treated with IVIG/SCIg. IVIG stops your auto-immune system from releasing more into the blood stream, but it does little or nothing to kill the bad guys already released. Unlike IVIG, Plasmapheresis will remove (filter out) the bad guys from your blood stream, but won’t do much about stopping your system from producing more. One pass of Plasmapheresis won’t get all the bad guys because some are too deep in the veins at the time. Since the blood is always circulating, the bad guys will soon show themselves again and that is why Plasmapheresis works better after several treatments.

PE can be summarized as the removal of units of whole blood anticoagulated with heparin followed by centrifugation to separate the blood into the cellular elements and plasma. The cellular elements are then mixed with a replacement for the discarded plasma and reinfused.

Plasma Exchange helped me more than IVIG. I had approx 75 PE sessions over about 18 months, mostly outpatient. I noticed improvements 2-3 days after my first PE treatment. I never had any noticeable improvement with IVIG, although it may have helped limit the severity of my GBS/CIDP/MFS when I first came down with it.

The outpatient PE exchange takes ~3 hours, longer if using a PICC line or other slower infusion method, and they replaced approx 4 quarts of fluids during each session, in my case. They will administer 4 to 6 bottles of the replacement plasma, depending on doctor recommendations. The fluids removed from my bloodstream were very gross (dark and dingy looking) when I first started, then changed to yellowish, and then became clearer towards the end.

The PE always made me very sleepy and I was weaker when I left than when I started. I always slept well the night after. I started outpatient PE at twice per week for several weeks, than dropped to once per week. Then every other week, then every two weeks. I stopped for a few months then started up again at every 2-3 weeks.

I had many side affects after Prednisone took my immune system off-line. I got the typical puffy face plus diabetes, pneumonia, shingles, thin skin, cataracts, and a very rare fungal infection that required neurosurgery to remove (left me with vision loss in one eye).

Other folks report tolerating Prednisone well. I recommend you discuss alternate immunosuppressants and cortisteriods like Imuran, Cellcept, etc. with your doctor before deciding what is best in your particular situation.