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Recently diagnosed with CIDP like condition. Onset of muscle weakness in legs and arms was more rapid than normal according to my doctor (neuromuscular specialist). I had the first IVig infusion 20 days ago, and my symptoms continued to become worse despite that treatment. Because of the aggressive deterioration my doctor is recommending the use of Rituximab. My condition went from normal function to not being able to stand and being unable to turn on my electric toothbrush with my hands in 31/2 months. My questions are What was the time between when your condition was noticed and when it reached its peak? And has anyone with CIDP had experience with Rituximab as a treatment?
Replies to "Recently diagnosed with CIDP like condition. Onset of muscle weakness in legs and arms was more..."
@martin2091
from @ itsmeagain
How about overnight?! I was walking along nicely with my 4wheel walker. I was at home, fell and broke my ankle in 3 places. Two days after the surgery the therapist tried to stand me up to determine how much weight I could put on it and my legs were like jelly. I’ve been in a wheelchair ever since. Four days after my last coved vaccine! That was 5 1/2 years ago.
I’ve been on Privigen ivig 2 days a month and it hasn’t helped that much. I’ve reached a plateau and I still can’t walk very well without great help.
@martin2091 My CIDP is autoimmune. I am taking Panzyga every three weeks for three days. It has turned my life around. I had tremors from the motor neuropathy. I can write and sign my name. I have problems with balance and walking was wheelchair bound. I am walking without my crutches and don’t have to use my wheelchair. I have been on it a year. IVIG mainly is successful if it is autoimmune related. I also have lupus, sojourns, mixed connective tissue disease and Hashimotos. I was on IVIG from age 10-18. A research neurologist in Boston told me I would not be in the shape I am in today if I had never gone off it, I live in Texas. The infusion takes awhile to work my third infusion it started working. I don’t know your dosage I am on 2 grams instead of 1 gram infusion time 7 hours. It has helped my arrhythmias and pericardial effusion. I had muscle atrophy and it has gotten better. I was shocked when I reached over to itch my upper arm and there was muscle. It freaked me out I felt it again to verify it was there.
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@martin2091
I have a similar condition post chemotherapy for stem cell transplant. The onset of weakness happened very fast; within 3 weeks I was receiving treatments at the hospital. I drove myself and walked in before the treatment, and then over the course of 3 weeks at the hospital I was unable to stand, lift my arms, or walk for more than 5 min right through the treatment. Almost 1.5 years later, I still have the same weakness. Initially, it was believed to be post-transplant fatigue. But now it is clear, that this is neuropathy. My blood test for autoimmune neuropathy panel came in negative. It is not clear if I have CIDP, but all the symptoms are there.
I also have scleroderma, autoimmune condition. However, disease progression from scleroderma does not happen that fast. I believe, this is due to chemotherapy. Currently, I am on Myfortic, oral immunosuppressive drug similar to Cellcept and Humira (for arthritis). Myfortic (Cellcept) makes it a little better.
A combination of Cellcept plus Rituximab has been reported to be very helpful. Check out CLIPPERS and Cellcept discussions. You may find there more information from the patients with neuropathy. Many reported positive results post Rituximab treatments.