Little survey on oral Methylprednisolone

I was his patient in 2002-2005, & if I still had to see a neurologist, it would be him. He had me on 1,000 mg of solumedrol weekly, but I was a very severe case. It is very cheap compared to IVIG, but the side effects long term can be pretty brutal. It is very easy to administer, does knock down the inflammation, & does give one back strength until the next infusion. It kept me out of a nursing home back then, but I have paid the price in too many other ways.

Hi all. Christine here. I am 4 months into dx. GBS/CIDP? and have just started 500mg oral prednisone weekly…80mg daily. We tried monthly IV steroids of 1000mg, tapering down each month…5 days – 3 days, next month – 2 days last month. So far am feeling some benefits from oral steroids, e.g. increased energy levels to get me through each day is a good result. I am wondering how many of you are on oral prednisone and what is the lowest dose you are managing on?
🙂 Am LOVING this forum…such a wonderful support – thank you.

Hi Laurel,
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
kathy

Laurel, I like your attitude about being manic versus dragging your ass…so true. Am in the midst of a steroid mania as I write this…feel like WonderWoman tonight, but will will be a different story tomorrow morning.
🙂 Christine.

I think I’ve done well since being weened off the prednisilone. Still have symptoms from time to time. I think the treatment regime is worth a try, if ivig and other medications fail… deanop