Reply To: Going to see a specialist Friday, what alternative treatments should…
The top 3 afaik are
IVIG…mine worked for about a year and then improvements severely declined. High dose now for little benefit.
Steroids…helped a bit but dosage needed to be so high. Side effects pretty much too nasty to tolerate long term.
Plasmapheresis aka PlasmaExchange aka TPE. 10 days in hospital, treatment every other day. Amount of improvement and frequency between is unpredictable. Risk of line infection which I got as well as a blood clot. Ive been 3 weeks and Ive been 5 months and in between. Hate the experience but its about all that keeps me going now. All 3 neurologists Ive had said hate doing it regularly for patient.
Immuno suppressant like Rituxan IV has demonstrated some positive long term effects for some. Unfortunately it is not covered for CIDP under most medical policies and gets denied on appeals (going through this now)
Good luck. Let us know what they suggest for you.