Reply To: my cousin diagnosed as CIDP (NF155 IgG4 positive)

More on the treatment Jim mentioned.

“Abstract OBJECTIVE:

To describe the response to rituximab in patients with treatment-resistant chronic inflammatory demyelinating polyneuropathy (CIDP) with antibodies against paranodal proteins and correlate the response with autoantibody titers.

METHODS: Patients with CIDP and IgG4 anti-contactin-1 (CNTN1) or anti-neurofascin-155 (NF155) antibodies who were resistant to IV immunoglobulin and corticosteroids were treated with rituximab and followed prospectively. Immunocytochemistry was used to detect anti-CNTN1 and anti-NF155 antibodies and ELISA with human recombinant CNTN1 and NF155 proteins was used to determine antibody titers.

RESULTS: Two patients had a marked improvement; another patient improved slightly after 10 years of stable, severe disease; and the fourth patient had an ischemic stroke unrelated to treatment and was lost to follow-up. Autoantibodies decreased in all patients after rituximab treatment.

CONCLUSIONS: Rituximab treatment is an option for patients with CIDP with IgG4 anti-CNTN1/NF155 antibodies who are resistant to conventional therapies.

CLASSIFICATION OF EVIDENCE: This study provides Class IV evidence that rituximab is effective for patients with treatment-resistant CIDP with IgG4 anti-CNTN1 or anti-NF155 antibodies.”

here: http://www.ncbi.nlm.nih.gov/pubmed/26401517

This gbs-cidp website has a list of Centers of Excellence.

http://www.gbs-cidp.org/get-support/centers-of-excellence-2/

Perhaps if you contact USF Tampa ( a center of excellence) they will have a referral to someone in Miami.

Website http://www.health.usf.edu/medicine/neurology/faculty

Phone Information

Department Of Neurology – 813-974-3541

Good luck.