Has anyone used the high dose of methylprednisolone
AnonymousOctober 3, 2010 at 8:36 pm
I believe that you are talking about solumedrol (methlyprednisolone) infusions. I was in very bad shape & had gotten many loading doses of IVIG, as well as biweekly IVIG for weeks after that & nothing helped me. When they started giving me the solumedrol infusions, I got back some feeling, had a little use of my hands & just a little bit of strength. For me that was enough, as it kept me out of the nursing home. I was able to feed myself (not make a sandwich thought), pull knit clothing on lying down, & use a sliding board to get from my powerchair to the bed & on & off the commode. But it turned out to be a short term fix, nothing more.
It depends on how bad he is & what age. I was 48 & did develop cataracts & 80# in 21 months, but it did enable me to remain at home with assistance. I would try it before going through the cytoxan protocol.
AnonymousOctober 3, 2010 at 10:13 pm
Norman is 62 (will be 63 next month). In the latest issue of The Communicator, there is an article about CIDP Treatment update and it talks about taking 500Mg orally each week of methylprednisolone and how mild the side effects are. Normans’ legs gave out this week and now he cannot get up at all. His brother comes over every morning to move him to the living room and comes back at night to put him in the bed. I feel like I’m just grasping at straws right now trying to find something that works for him but I AM GOING TO FIND IT and when I do I’m going to BEAT THIS MONSTER that is trying to take over my husbands body !!!!!!
October 5, 2010 at 11:27 am
I have been fighting CIDP since 1996 and have had many ups and downs as we all do. Have tried pretty much every treatment you read about on this site as well as many of the MS drugs.
We all respond differently to each treatment , so it is important to work with your doctor to consider different treatments and/or combinations of treatments untitl you find the one that works for you.
Currently my routine is PE every three weeks followed with a 500 mg dosage of solumedrol then the next day I get 100 grams of Gamunex. Has held me pretty steady for almost two years now, but I did have a major setback three weeks ago. My doctor immediately put me on a very high dose of oral prednisone for one week and what a difference. I went from dragging my left foot and barely able to walk on my own, to being able to drive a 1300 mile vacation trip last week. For me it have been “a silver bullet” every time I get into trouble. As I said, not everyone reacts to these drugs the same.
I did have cateracts(?) but surgery fixed them.
Generally, if I do not respond to the week of oral prednisone, then I get three days of 500mg methoprednisone IV. I am 67, so I can relate to the age thing.
Hope this information is of some help to you. Keep plugging away and stay positive.
AnonymousOctober 7, 2010 at 3:44 pm
Hi there, Firstly sorry you too are having to battle this condition.
Secondly, i agree with Pam H in that having more outside help at this time is essential. Even if you look at the xtra help as being a temporary thing – when things pick up and stabilise the help ccan be easily stopped.
It sounds like you are both struggling sooo much with very little if any benefit, and by your comments your husbands condition sounds like it needs more aggressive treatment options to be tried.
I have had high dose methylpred (initially 3 times a week iv) and now weekly orally. The doses have varied depending on severity of relapse etc. To me it has been a life savor treatment – I am now 36, have been diagnoised for 3 yrs and initially the first year was more down than up. I deteriorated very quickly to a quadraplegic status – and just as my breathing was becoming affected we introduced iv methylpred and immunosuppressants in addition to the regular IVIG (IVIG was showing to give very little but some effect (I needed ivig 3 times a week to just hold me from deteriorating.
I had already tried normal steriods also in combination with ivig.
Once we introduced the methylpred and immunos things began to stabilise and then gradual improvement began.
Since then we have tried reducing some of the treatments and i have had one major relapse (a year ago) as we obviously reduced the methylpred too much (was at 250mg once a week iv) when i relapse we start again with a very high dose (1000mg) for 2 treatments in that week then 700mg for a ffew doses then back to 500mg weekly (again this is with immunos and regualr ivig)
everyone is soo different and unfortunately it is a matter of trial and error.
as far as side effects from methylpred – initially i had a bit of hair loss, feel very unsettled and hyperactive the day of treatment, insomnia the night of treatment and then the next day i feel like a bus has run me over – yet that is all manageable and preferable to the state i would be in without it. Takin such high doses at my age is obvioulsy not desireable and our goal is to be on as little as i need – we have just had a big 6 week trip to canada so i stayed on what we knew should hold me while away – and from next week we will try again a wee reduction – 5oomg instead of 6oom orally! yeeha. I take extra calcium and biophosphanates to help combat bone disease – although did suffer a pelvic stress fracture recently although that could have been due to tooo much running!
I have now recovered to full strength, am running regular half marathons and am currently in training for my first half ironman in 7 weeks!!!!!!!
I hope your husband finds the treatment he responds to, cytoxan would have been the next one we tried if this combo didnt work!
All the best and hope you both start to see some progress in near future.
AnonymousOctober 7, 2010 at 10:04 pm
I know these are not the words you want to hear, but they are the words i have. Hang in there.
It may take time to get healing done.
CIDP is a nasty one to go through.
But I battle it as well, and my heart walks where your heart goes. I know the battles you are fighting and they are indeed tough. It may be a long road. Hang in there and take the successes where you find them.
Take love and joy every chance you can. You can still find that.
Make your next day better than today. My heart goes with you!!
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