Reply To: Prednisolone making CIDP much worse….?

August 28, 2013 at 8:18 pm

Plasmapheresis 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.

I had a 2-line tunneled catheter installed in my neck; the tubes ran under my skin and out my upper chest. Unlike a PICC line or IV, this device can stay in for a good year. There is extra care needed to make sure you don’t get the exposed points infected. They tell you to flush it and change the bandage daily; I did that once per week because I kept it clean. You won’t be able to take a shower or get the area wet.

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. Some of the bad (CIDP) anti-bodies will not get removed if they are too deep in the veins at the time. This is one of the reasons multiple PE treatments are more effective than just a handful. If one’s auto-immune system is still producing the bad (CIDP) anti-bodies, PE can remove them, IVIG does not remove them.

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.

If you are in the Los Angeles area I would recommend using the Apheresis Center at Cedars Sinai Medical Center for the outpatient PE. The doctor that runs the program is excellent as are the nurses and equipment.

Hope this helps.