CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

I was diagnosed with CIDP last summer but have had symptoms for several years. I am 74, female. I also have chronic EBV, small fiber neuropathy and had an acute exacerbation like Guillain Barre following a Covid infection last summer. The autoimmune process destroys the myelin sheath of peripheral nerves. It’s absolutely worthwhile being “tested” for it, although it’s really more of a clinical diagnosis. An EMG, certain neurological autoantibodies in serum and spinal tap can help in the diagnosis
. IVIG is very helpful for many. I’m on that plus steroids and immunosuppressants. Without the diagnosis, you won’t get treated accordingly. I wish you well! I think this condition is far more prevalent than reported, especially in women.

I have been on IVIG for about a year. I still feel like my legs are very heavy when I walk. Most of my symptoms seem to be motor related. Also, I have a lot of fatigue. Has anyone tried Rituxan for this condition? I also seem to have Post exertional fatigue. Is this a common complaint. Wondering if I have long Covid as well. Thanks for the help.

I will be starting Rituxan infusions in a few months with a new neurologist in a new state.
I have had IVIG in the past over an 8 mon period
It did not help me at all.
My new neurologist seems to think it will work for me.
I sure hope so as I’ve been dealing with this over past 11-12 yrs
Now it’s in my right hand, both feet are numb, balance is awful, and I have alot of other issues
My lips have been numb since the beginning

@dklaus @harley22 Since both of you are dealing with the same issues I thought I would answer both of you together. Use of IVIG has not helped at all and now you would like to try rituxan. be prepared for the insurance companies to deny you at first. the cost is very high and insurance would like you to use cheaper ones first. That’s what happened to me and others on this site. I had rituxan in Feb and am scheduled again in Aug. I thought it was wonderful! I don’t have CIDP, so really can’t compare.
Do you think you could ask your doctor about IVIG and rituxan? Why they worked for a short time and then didn’t. Aand is there any clear evidence on rituxan?

I just finished my second IVIG treatment for multi-symptom SLE and small fiber neuropathy. I am having difficulty with the side effects , mainly debilitating migraine (6days), nausea and weakness. I have not had any positive results yet but understand it can take several months for any relief.

I’ve been on IVIG / SCIG since 2021 for CIDP and occasionally steroids too following viruses.
My rapid decline in 2021 halted then slight improvement aided by PT (ms style). The SCIG (Hizentra) is more “even” than IVIG and gives me a better quality of life.
The fatigue is a big battle. The PT helps with stretching to maintain movement ability and exercises to fight muscle loss.
I also take Ritalin to fight the fatigue.
The CDIP is with me for the rest of my life. I’m 74. I have a life. It is not the life I had before but it’s good. I have to work at it and be super proactive in my daily health and health care.
There is a new drug approved in the pipeline, VYVGART Hytrulo, specifically aimed at CIDP. See my recent post.

I am 70 and was diagnosed in 2020. My CIDP neuropathy affects my right foot and extends to my shin. I am very fortunate that the CIDP has not progressed. I also had a drop right foot but I was able to eliminate that with an injection of exosome stem cells. My fatigue was treated with Amantadine and it had a positive effect. I stopped taking it after one year. The severity of the fatigue comes and goes; life style changes have helped. I no longer drink (I was a social drinker with 5-7 glasses of wine/cocktail per week) and I try to eliminate as much sugar as I can. Exercise is very important - walking 10,000 steps a day helps. Managing your life affairs in which you schedule yourself at your most energetic times is key.
R-lipoic acid with a high quality vitamin (MD Prescriptives 5-1 is outstanding) and getting a vitamin B panel assessment to ensure you are getting the right Vit B also helps me. Keep moving!!!

HELP My husband had covid in mid-October 2023, had his covid shot mid-November 2023 and collapsed on 12/24/2023. The neurologist diagnosed him with peripheral neuropathy, saying it was genetic. He did not do any genetic tests. Nobody will listen to me and MAYO is not taking new neuro patients.
I am at wits end. I found a nephrologist- yes nephrologist to help me with tests. His spinal tap showed somewhat elevated levels of protein, but he needs a nerve biopsy. I cannot find a doctor to help us. It has been 7 months. We are desperate.

@debbiewave Your husband’s situation sounds so difficult for both of you. Is he currently being seen by any doctor? If you live in the Mid- west, there are several options.
this first link is about the numerous hospitals that partner with Mayo.
https://www.mayoclinichealthsystem.org/?
Other options to try are comprehensive medical centers and university teaching hospitals. You can call the hospitals directly and ask for what you need. That’s what my husband had to do. When I was at my worst and getting no help from our local hospital, my husband called the university hospital in Denver and asked for an appointment. I didn’t make that appointment, though, because I got very sick and ended up in ER. Then our hospital called the university hospital and asked for help. They told the ER how to treat me! And that’s how I came to still be here and telling you what to try!
What do you think you’ll say when you make the calls?

Thank you. We will try that option. The center for peripheral neuropathy suggested Function Medicine???