Reply To: Any experience with centers for excellence?

IvIg doesn’t work for everyone. I had two five-day regimens of IvIg, but this did not stop the progression. I then had intensive plasma exchange — nine treatments over a three week period while in the hospital. Since then, I rely only on oral medication.

I take it your plasmapheresis is being done outpatient. I don’t know how that compares to the hospital routine, but I would think any form of plasma exchange is not well suited to long term treatment because of the port. What is the plan for how long you will be doing plasma exchange? Are you also taking drugs such as prednisone?

Chronic tiredness is normal, although in some cases (such as mine) it improves slowly over time.