thoughts on high dose iv methlypred??

I don’t know about the combination of drugs but my neuro. tried me on IVIG to start and decided that wasn’t working (was it him or ins.?….. I’ll never know) so he put me on 500mg sulumedrol infusion twice weekly for I think 3 months and has since had me on oral methylprednisilone…am down now to 400mg twice weekly and next time I see him willl probably ween down some more. So far this seems to be working, have recovered probably 85 to 90% of my pre-cidp function, the biggest side effects I’ve seen so far are a slight rash, sleeplessness on steroid day and some nasty hot flashes, again mostly on steroid day, as well as moon face and some weight gain. I have also noticed that while I’m not certain it’s connected my blood sugar and blood pressure levels are now elevated and that has never been a problem before. I guess you have to take the good with the bad but am starting to wonder some days if the cure might end up being worse than the disease.:eek:

I was put on weekly solumedrol infusions of 1,000 mg a week for 21 months back in June of 2002. Initially, I was given 5 loading doses of 5 days of 1,000 mg to “jump-start” me. This treatment was only given to me after PE & many treatments of IVIG for 4 months (neither helped me at all.) The solumedrol gave me just enough strength to transfer from a power chair to a commode & into bed by myself (with a sliding board), feed myself very clumsily, & pull clothing on & off. I begged my neuro many times during that time period to wean me off of them, but each time I lost what little bit they had given me to be able to function at home (with help.)

When he finally did wean me off after almost two years, I first went down to 500 mg for a few months, then 400 mg, then 250, then nothing. By that time I didn’t lose any function, but had been unaware of just how much pain they had been masking. I never did need them again & was so glad to be off of them. I gained 80# while I was on them (still battling with the weight), have scars from a horrible rash I had while on them, needed cataract surgery in both eyes in 2004, had night sweats, mood swings… All in all, they were terrible for me, but they were all that kept me out of a nursing home…
Pam

My neuro. had me go from 500mg twice a week to 450mg twice a week for 2 months then down to 400 mg twice weekly for the past 2 months. I see him again on may 1 where I suspect he will reduce the dosage again. I have noticed that for a few days after a dosage reduction are a struggle but after my body adjusts to the lower dosage I haven’t lost any strength or function yet, will be interesting to see what happens this time.