CIDP new approach

That is so hopeful. My husband has yet to be given a diagnosis, and he collapsed 12/24/23. He can walk with pain and use of a stand-up walker. He has a phone appointment with Dr. Dai in Albuquerque finally on Sept 19th. We live in Las Cruces, NM and NO help from any neurologists. One did the nerve study and said it is hereditary and you just have to deal with it.
Found a doctor that is a nephrologist- not his field but he has been helping us to get a diagnosis. It has been a struggle..........

My husband has been diagnosed since 2014. For 10 year IVIG worked great but now he's had a terrible flare up (?) and is wheelchair bound and his hands no longer work. He start Rituximab in Nov/Dec and gets it every three months. It is not yet showing signs of working but docs (at Northwestern and Mayo) say to have more patience, and their hope is that it break through and he will have some improvement. Our lives have been completely turned upside down. My husband has just retired and has been in hospital, rehab and assisted living since Oct. 2024. We head to Mayo in Rochester March 3 for more tests and advice. I'm so encouragaed the Ritux is working for you!! How long did it take for you to see results. Many thanks for your post. Hoping and praying for you!

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?

@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.

@altabiznet Thanks for the information.

I have a very rare form of Myasthenia Gravis and was not only going blind but couldn't walk without help and could barely talk (I was a Clinical Recruiter and spent hours on the phone) without lisping, drooling, etc. I tried CellCept, Immuran, IVIG, and plasma exchange. I was on my way to disability until my Neurologist (now retired) got me in the final phase of a Rituximab clinical trial. Nothing short of a miracle. After 2 infusions my sight returned and I officially was in remission!!!!! I was told I would probably need infusions every year or when my symptoms reappear. That was 15 years ago! I am still in remission and I am not on any immunosuppressant. Prednisone will never be an option for me again - I was on 60mg for 5 years and it took 3 years to wean off of it. I had every side effect possible. Knowing that Rituximab is now readily prescribed is a comfort. Now, if I can only find someone to help my husband! Good luck to everyone.

@margydolan Hi Mary, how is your husband now. Do you live in the Chicago area?

@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.

@itsmeagain wow, that was super quick. Sorry the Privigen hasn’t helped that much. I’m starting Retruxin this coming Thursday because it didn’t work that well for me either. Hopeful the Retruxin will 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.