May 1, 2019 at 5:17 pm #116352
So my neurologist is sending me to a CIDP/GBS specialist. For about the last 8 months, I’ve had numb feet, calves, and fingers. My balance is a bit off and exertion causes shortness of breath.
Despite his efforts to treat me with higher doses of Prednisone and weekly IVIG treatments nothing is improving.
So what alternative treatments should I be on the lookout for when visiting the specialist on Friday?
May 2, 2019 at 2:53 pm #116353cer100Participant
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.
May 4, 2019 at 7:02 pm #116357
So the specialist wants to start me on Imuran and wean me off the prednisone. We will continue the IViG treatments.
Anyone here have any experience with Imuran?
May 5, 2019 at 12:32 am #116358
May 5, 2019 at 4:55 pm #116359
Thank you Cer100 and Jim for responding.👍🏼
May 6, 2019 at 9:16 pm #116361KathyParticipant
Good Luck with the Imuran. I hope you have great success with no side effects. I’m pretty certain I will be trying Cellcept. Will know more in June after my next neuro appointment.
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