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Anyone had IVIG Infusions for CIDP ceased after a number of years?
Autoimmune Diseases | Last Active: Apr 17 2:57pm | Replies (8)Comment receiving replies
When you stop IVIG the neuropathy progresses a lot faster. I was on it from age 10-18. That was for 8 years the only reason went off of it fell off my parents insurance. I was told by Dr Anne Oaklander in Boston a research neurologist that if I would have remained on it that I wouldn’t be in the shape I am in today. I have never been told that your body quit responding to it. It has been proven stopping IvIG for neuropathy will cause progression. Once you are on it it’s for the rest of your life.
https://www.sciencedirect.com/science/article/abs/pii/S0022510X24004490
Here is another article. Mine is autoimmune.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9166547/#:~:text=Adrichem%20et%20al.,in%20clinically%20stable%20CIDP%20patients.
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My thoughts about stopping IvIg (for Sjogren's) are because my veins are starting to blow-they won't hold the pressure of the drip. I suspect my age (78) has something to do with it. It makes sense to get a port if you are having chemo with a finite treatment time, but mine will be open ended. Eventually I will get an infection in the port and that will be a mess. Better I face it now. Afterall, it is my body attacking itself and I should find a way through this. I've had a lifetime of doing that.