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Anyone have the FGFR3 antibody gene?
Neuropathy | Last Active: Jul 31 10:32am | Replies (147)Comment receiving replies
Hello everybody,
My latest diagnosis is idiopathic sensory-motor polyneuropathy, I am exhibiting the symptoms for the last 14 years.
I just had the "Sensory (+- Motor) Neuropathy Panel Antibody IGg vs FGFR3" test down, the result is 20,000.
I would like to share an IVIG "Article in Brief" from "Neurology Today" Mary Beth Nierengarten from September 7, 2023 (I was not allowed to paste the link):
"In a review of evidence from 2008 to 2021, the American Association of Neuromuscular & Electrodiagnostic Medicine published a new consensus statement updating its recommendations for the use of intravenous immunoglobulin G (IVIG) for neuromuscular disorders. The updated statement advises against using IVIG for small fiber neuropathy that is idiopathic or related to tri-sulfated heparin disaccharide antibodies or fibroblast growth factor receptor-3, among other evidence-based guidelines."
I already obviously took, in the past, a couple rounds of IVIG, to no avail.
... and of course I would like to ask for any advice for effective treatment to lower the FGFR3.
Thank you in advance,
Pedro
Replies to "Hello everybody, My latest diagnosis is idiopathic sensory-motor polyneuropathy, I am exhibiting the symptoms for the..."
Hi Pedro- I’m sorry the IVIG didn’t work out. I never got to try it, but I am also FGFR3 positive, though I have small fiber neuropathy. I suppose depending on how you look at it, I have “idiopathic” (I loathe the term even if it’s the appropriate medical one) neuropathy, or for the camp that believes the FGFR3 antibody is the cause, then it’s not idiopathic.
I came across the study you cited as well and was disappointed because I hoped IVIG might be an option for me and was keeping an eye out for any new research.
As far as I know, both the FGFR3 lab test and IVIG to treat associated neuropathies are considered experimental. From the info I’ve been able to find, researchers have been able to observe an association between it and neuropathy, but not necessarily a causal link. IVIG was one proposed treatment as you know. It’s not known if lowering the antibody or addressing it would change symptoms…
My neurologist told me alternatives to IVIG were plasmapherisis (plasma exchange to remove extra antibodies or proteins from the blood) and prednisone, which has long-term side effects. I don’t think there’s much support in the research for either, at least not for the small fiber neuropathy that I have, so neither seems feasible in my situation.
Still, thought I’d share it since you were thinking about alternatives.
Did your neurologist have suggestions after the outcome from the IVIG?
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Hello Pedro @pitord, Welcome to Connect. I'm sorry to hear that you have been dealing with the sensory-motor polyneuropathy symptoms the last 14 years and have now been diagnosed with the condition. I thought I would share the link for you since new members are not allowed to post links for a short period of time to prevent advertisers from spamming our community.
--- New Recommendations on Use of IVIG for Neuromuscular Disorders
A Consensus Statement from the AANEM: https://journals.lww.com/neurotodayonline/fulltext/2023/09070/new_recommendations_on_use_of_ivig_for.3.aspx.
There is another discussion you might find helpful:
--- FGFR3 levels are high any treatments?: https://connect.mayoclinic.org/discussion/fgfr3-levels-are-high-any-treatments/
Has your doctor or neurologist suggested any other treatments?