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CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Autoimmune Diseases | Last Active: Oct 13 3:46pm | Replies (312)
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@dklaus

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.

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Replies to "I have been on IVIG for about a year. I still feel like my legs are..."
harley22 | @harley22 | Jul 5 7:09pm

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

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kgitti | @kgitti | Jul 24 10:55pm

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.

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