1. < Neuropathy
Profile picture for sarabd3

Antibody Plexin D1 positive neuropathy

Posted by sarabd3 @sarabd3, Sep 27 8:14pm

I’ve had neuropathy symptoms for a few years, with significant relief of my symptoms follow two courses of rituximab (which were given based on a misdiagnosis). I had a recent negative skin biopsy, but got a “slightly positive” result from the Wash U Small Fiber Neuropathy serum panel for Plexin D1 autoantibodies. Plexin D1 neuropathy generally responds to immunotherapy (including rituximab). My neurologist says she would only consider further rituximab treatment with a “strongly positive” Plexin D1 test result. I am currently without any treatment (I could not tolerate gabapentin) and my symptoms are worsening. Especially problematic are reduced sensation and autonomic symptoms (including severe fatigue). Does anyone have information to offer or advice? Thank you!

Interested in more discussions like this? Go to the Neuropathy Support Group.

Profile picture for celia16
celia16 | @celia16 | Sep 28 4:21am

I’ve never heard of this. Very interesting. Do you have pain?

REPLY
Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | Sep 28 8:09am

Hello @sarabd3, I would like to add my welcome to Connect along with @celia16 and others. I also had not heard of the Plexin D1 connection with small fiber neuropathy. Here is some research I found on the topic:

-- Efficacy of rituximab on antibody-positive small fiber neuropathy: A series of 5 cases
https://www.sciencedirect.com/science/article/abs/pii/S0165572825000396
-- The Role of Antiplexin D1 Antibodies in Small Fiber Neuropathy:
https://www.neurologyadvisor.com/news/the-role-of-antiplexin-d1-antibodies-in-small-fiber-neuropathy/
Since the rituximab provided significant relief for you, have you thought about getting a second opinion from a different neurologist or discussing it further with your neurologist?

REPLY
Please sign in or register to post a reply.