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Anyone have the FGFR3 antibody gene?

Neuropathy | Last Active: Jul 31 10:32am | Replies (147)
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@david1959

I just joined. I was diagnosed in 2017 with AntiFGFR3 autoantibodies. I have been in pain for years prior with no explanation. I have been getting IVIG monthly for almost 4 years now. It helps but Doctors are not even sure of proper dosage levels. I used to be at 180 grams but now I am on a maintenance dose of 90 grams. There are some studies occurring. Most notably a longitudinal study out of St. Etienne U in France. Hopefully some answers will be found. Sadly there is emerging evidence that AntiFGFR3 neuropathy is not only sensory but can have motor nerve function involvement in it's pathogenesis. I am doing my best but it is a very hard road....

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Replies to "I just joined. I was diagnosed in 2017 with AntiFGFR3 autoantibodies. I have been in pain..."
John, Volunteer Mentor | @johnbishop | Oct 6, 2021

Hello @david1959, Welcome to Connect. Sorry to hear that you have not found much relief for your neuropathy symptoms. There is a clinical trial in phase 2 that sounds somewhat related to your condition -- IVIg for Small Fiber Neuropathy With Autoantibodies TS-HDS and FGFR3: https://clinicaltrials.gov/ct2/show/NCT03401073. They haven't posted any data that I can find but hopefully will soon. There are also a few other articles I found that may provide more information for you if you haven't already seen them.

-- Autoantibodies and Small-Fiber Neuropathy: https://neuropathycommons.org/neuropathy/causes-neuropathy/autoantibodies-and-small-fiber-neuropathy
-- Clinical characterisation of sensory neuropathy with anti-FGFR3 autoantibodies: https://pubmed.ncbi.nlm.nih.gov/31690697/

@doctorshelley may have some suggestions or more information to share on the topic. You mentioned having been in pain for years. The Foundation for Peripheral Neuropathy also has some complementary therapies listed on their site that may be helpful - https://www.foundationforpn.org/living-well/

Have you had to make any lifestyle changes or have you tried any complementary therapies to see if they might help?

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