My Neuro would not discuss plasmaphresis until i have went through six months of IVIG, Cellcept and Prednisone. The six months will be up in April.
When i see him on Mon. I’m going to ask to have the IVIG more freq than once a month until April 24th.
I’ve looked up plasmaphresis and it is harder on the body than IVIG. I’m willing to take the risk if it will let me walk or stand without a walker. I’ve also not been very accepting of the w/c.
I, too, am not ready for the rocking chair. Maybe I should be at 64. I exercise every day. They are sit in chair and lay on bed exercises, but they get done. Also, do standing exercises. Can stand alone unaided for 30 seconds now. YEA.
From this forum, I’ve found out that some type of exercise is really important.
I was dx with cidp in nov and have went through five tx of ivig, which so far i have not had any real improvement. i seem to be in a holding pattern and some days i’m worse than others.
I was started at 80 mg of prednisone and this month started alternating 60 mg with 50 mg of Prednisone. Plus, i’m on Cellcept 2000 mg daily and Arava 20mg daily.
MD is thinking of trying plasmaphresis on me. i’m not sure when this will be started.
I wouldn’t get all bummed out just yet.. Just look at your post just before the last… somtimes we can overdo it and it may take a day or so for it to catch up with us. I just wanted to tell ya, that after I sent you that email, about how I was getting numb in the legs again, I woke up this morning much better. It lasted for 4 dayz. I was doing so good, I had picked up my activity some…and like you, I’ve had that panicky feeling for a few dayz. Thats the way it is for us, well me anyway.
I hope after some rest you will feel better… peace my friend.
I been trying to get in touch with u. I sent u an email last week thru ur website..
Dr. shan ren zhou at summit has been my nuro since around 2000. I started taking immuran a little over 2 years ago, and made it about 20 months without ivig.
I spent last christmas and new years in tennesse christian rehab. Bedridden. I’m getting my 3rd ivig since then right now. (thats 3days 45/g/day) They make sure I’m really getting weak, then it takes a few days to set it up, and I wind up on my butt. I been working 2 hard to give it back. I’m sore and miserable every morning from exercise, and all that work down the tolit in a few short days. I read all of your site. I asked my ivig nurses, about your doctor uskavitch(sp) they all give him high marks I.m goan to send u a pm on here with my email