CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Yes it helped but the Rituxan is working better...
I reported mine to the CDC 2 years ago and again a year later.. The FDA or CDC or somebody should be on this.
It takes 3-5 months to see a neurologist In the Santa Barbara CA. area,,, Talk to the neuromuscular guys at UCLA they are not afraid to admit it may be the covid Vaccine that caused it... It sure did me less than 2 weeks after the first vaccine I started falling down, then it seemed to melt away all the muscle in left leg first and then the right.
I had a friend get almost paralized and put on a ventalator a few years ago just 2 days after his vaccine,, after a week they put him on A Ventilator and he walked home 2 weeks later..
Dr. Behzad Ourmazdi. 805-383-2929 in Camarillo CA. good guy and good Neurologist
Hopfully the folks that gave us this affliction will try harder to fix it!

Yes, I have CIDP and I’m treating with IVIG every 2 weeks. I also have neuromyletis which is very painful. I take marijuana gummies for pain and spasms at night. Supposedly I have MOG antibodies disease. So I’ll now since February 2021

Same here except the vaccine for Covid paralyzed me from just below waist down and caused neuropathy in my right arm. I’m so ill also with inflammation and had to have a colostomy and a catheter. I’m treating still for many things including my heart.

I have CIDP and other issues. I was treated with Rituximab early on in this vaccine injury. First it brought out Shingles. It was light case because (I assume) had vaccine for Shingles about 8 years ago. 2nd infusion of Rituximab caused my hair to come out. So did not take that anymore. The sheath that covered the bundle of nerves shed off and I had sever nerve pain up and down my spine. It was so painful I wanted to die. I prayed to our Kird Jesus Christ to let me die . I had cried for a year and a half. Right after my prayers to God to stop my pain, I received the prescription from my neurologist at UAMS for IVIG. It took away that most horrible pain. I still have pain from stenosis and just plain ole arthritis and degenerative. Aging processes. I had found a product called IMary at health food store that seem to help with back ache but now they don’t sell it anymore.

Welcome @cathiee, A member in another discussion shared a link to the MOG Project website that might be a good resource if you are trying to learn more about the condition -
https://mogproject.org/. There are also several discussions on treatments for CIDP that you might find of interest. Here is a link that shows the discussions and comments - https://connect.mayoclinic.org/search/?search=CIDP+treatments.

From reading your posts, it sounds like you have been dealing with a lot of different issues and pain for quite awhile. Have you found anything that helps you manage the symptoms?

This is incredible news! Congratulations and thank you for sharing that for others.

44 infusions of IVIG and had a little improvement with it, but lost vision in part of my right eye and got cateracs, that they say was probably from the cortocosteroids.
The rituxan seems to be working pretty well, after 3 infusions, one every 3 months, right after the infusion for about 2-3 weeks feel weak and tired but with PT and running in the pool 3 times a week , Ive gotten ride of the walker and occasionally even the Cain. Has anyone tried the new one vyvgart?? for their CIDP

Rituxan seems to work better for my CIDP, 44 infusions over a year and half and little improvement. With 3 infusions of Rituxan over the last 6 months i'm getting better pretty fast, over 3 1/2 years since the covid vaccine !

In my 4 years of trying to find help for my CIDP in Albuquerque NM those doctors names never showed up. I did find help from https://www2.phs.org/providers/weiwei-dai/2073424 who battled my insurance such that I became the first person to be covered (fully) for Hizentra SCIG.

Harley, I just got my first infusion of the Rituxan bio equivalent Truxima yesterday at our Scottsdale office. It went well. The infusion center is very comfortable and the infusion nurse very good. I actually felt better today than I have in months. I expected the opposite based on a previous experience several years ago. so am curious how I will feel going forward. It’s supposed to take 2-3 months to work, but I am grateful for 1 day of better energy and less pain. I so hope you have a good result when you start your treatment. I am temporarily increasing the frequency of IVIG from every 3 weeks to every two but will go off IVIG in 3 months if the Rituxan is working well. I hope your relocation goes well. I continue to be impressed with Dr Sivakumar, and I am very picky. I feel a ray of hope arising in me which is more than welcome! Take care!