Reply To: "Flare Up" at 6 months post GBS diagnosis

April 15, 2017 at 4:19 pm

Recurrent Guillain Barré Syndrome (RGBS) is a rare entity that has been reported in about 1–6% of all patients with GBS. Some prominent neurologists believe that if symptoms reoccur after a year it is likely CIDP.

With almost all autoimmune diseases, our systems have learned how to make antibodies that can attack “self”. Sometimes what triggers this can be an infection such as the flu, or a flu shot, or something else our system sees as needing specialized antibody intervention. People on this forum have reported a myriad of triggering events for them. Usually the bad antibodies attack the myelin sheath, in rare instances the axons.

Corticosteroids will slow our immune system response and reduce inflammation (from myelin assault). This can help reduce our susceptibility to future episodes of RGBS/CIDP. However, this group of medicines (including Prednisone) can have many bad side affects for some of us if taken long-term.

Finding the best treatments for each of us often requires some trial and error because none react exactly the same to the same treatments. I highly recommend treatment at a center of excellence or by a neurologist well experienced treating peripheral neuropathies.

I hope you can fully recover from this awful disease, which might take 2-3 years under the best treatment conditions.