my cousin diagnosed as CIDP (NF155 IgG4 positive)
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February 18, 2016 at 8:13 am
My cousin is about 25 years old, just recently diagnosed as CIDP (NF155 IgG4 positive).
He has difficulty climbing stairs and walking is normal but slow.Did anybody know about this special kind of CIDP? How is the treatment and recovery? any special doctor or facility you know?
This month he did do plasma treatment, but not see obvious improvement.
Any suggestion or sharing is greatly appreciated!
— Joy
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February 18, 2016 at 3:29 pm
This form of CIDP is more resistant to traditional IVIg treatment. Plasma Exchange may be a better treatment option to keep the disease from doing much more damage. You may wish to look into treatments using Rituxan as this may offer better hope for recovery in your cousin’s case.
A technical discussion of the IG4 antibody can be found here:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3959751A recent summary:
http://www.practiceupdate.com/content/2015-top-stories-in-neurology-cidp-unresponsive-to-therapy/31536If you can give us your city, we may be able to suggest some medical providers.
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February 19, 2016 at 2:49 pm
Thank you so much Jim. The article is really helpful too. My cousin is not in United states. I am in Miami in Florida.
He probably will plan to have treatment in United States. It will be great if he can find the better doctor or facility. -
February 19, 2016 at 8:49 pm
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.
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October 7, 2021 at 1:50 pm
Hi Joy,
I just got diagnosed with that nasty disease. May I know where did he get the antibody NF155 tested (which country) and where to get that test in Miami? I am overseas in South America and it’s been tough to get a proper analysis/diagnosis.
Thank you.
Jorhe
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October 7, 2021 at 4:10 pm
Doctors and hospitals in the Miami area are listed here:
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