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

April 5, 2017 at 10:45 pm

Hi Kaylee, You are in the right place and asking the right questions! It seems you and I were gifted with this disease in the same year… how much luckier could we be lol. Seriously, it’s an awful disease and I wouldn’t wish it on my worst enemy.

Having the disease means, our autoimmune systems know how to make antibodies that can attack “self”. When an invading antigen such as the flu gets a hold of us, our autoimmune systems go to work producing specialized cells to stop the invader. A discussion of the types of cells involved is here: https://forum.gbs-cidp.org/topic/new-cipd-and-central-nerves-cranial The thread also talks about what others have experienced treatment-wise and may offer some insight into helping you choose future treatments.

Metaxalone is a muscle relaxant used to loosen muscles and relieve pain caused by strains, sprains, and other musculoskeletal conditions. It does not treat CIDP, but can help alleviate symptoms. CIDP treatments are listed above in this thread, in my post dated April 2nd. Please follow the links there to learn more about your treatment choices.

Regarding side affects to IVIg, here is a good article that covers them and what to do about them:
http://www.igliving.com/BlogEngine/post/IVIG-Side-Effects-When-to-Seek-Medical-Attention.aspx

Have you been on any Corticosteroids such as Prednisone? Such drugs can reduce your systems immune response, thus lowering the creation of antibodies that attack “self”.

You may wish to consider taking Alpha Lipoic Acid. ALA is over the counter and can help improve Peripheral Neuropathies. A dosage of 1200MG to 1800MG per day is suggested. You can search these forums for more info about it. I use the brand listed below:
https://www.luckyvitamin.com/p-6120-now-foods-alpha-lipoic-acid-600-mg-120-vegetarian-capsules

I hope the information in this forum can help improve your quality of life and end the recurring attacks you seem to be prone to.