Reply To: Your top signs that your CIDP is coming back/getting worse

Bryan, I would not want to guess at what may have failed for you, the Prednisone, the IVIg, the lack of PE, or something else. The good news is that you have many drug choices other than Corticosteroids such as Prednisone. Several of the options have fewer side affects and can help lower your autoimmune system responses, especially responses that may trigger antibodies that cannot distinguish “self” from invading antigens. Most of the alternative drugs are listed here starting on page 9:
https://www.gbs-cidp.org/wp-content/uploads/2012/01/CIDP.pdf

More alternative treatment approaches are discussed here:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3487533

A new drug in clinical trial is listed here:
https://forum.gbs-cidp.org/topic/mycophenolate-sodium

I’m sure you’ve learned by now that because those of us with CIDP do not respond in the same way to treatments, finding the treatment that works best for us can sometimes require a trial and error approach… but please, only under the guidance of a Neurologist experienced in peripheral neuropathies. Unfortunately, another complication can be how our insurance companies allow us to proceed. They often error on the side of their short-term pocketbook savings over our near-term health, causing their long-term pocketbook expenditures to increase and our health to worsen.

I hope you find treatments that help you get well quickly from this awful disease.