Yes i have been on pulse methylpred for 3 years now. I would definately consider it if ivig wasnt working in addition or not with immunos.
I have read quite a bit of Dr Parrys research also and to date my side effects have been minimal especially in comparison to the alternative (I had reached quad status with breathing just becoming affected when we added the methylpred to my treatment reigeme) which had included the basic ivig treatments (including up to 3 times weekly,) ivig in combo with o prednisone, and then we tried the reg ivig plus immunos and pulse methylpred.
That was 3 years ago and since then we have tried to see what we can reduce without causing relapse etc. We started on high dose 1000mg 1v twice weekly then got on to 500mg iv weekly regeime for a year – tried to get down to 250mg but relapse resulted with ending up wheelchair etc. that was a year ago and since then i have been on 600mg Oral weekly and as from next week am trying 600mg fortnightly! How exciting!!!! 😉
Side effects for me have been the manic type state i feel on the day i take the meds, the insomnia that night, and hence feeling like a bus has run me over the next day (these symptoms are all manageable and i always book in an early night on tuesdays and weds) Initially i had a bit of hair loss – no major and it grew back, i have had a recent plevic stress fracture but that could be attributed to regular long distance running?? but my med team have considered it could be methylpred related. Otherwise to date no other complaints really.
hope this helps
all the best