Anyone have the FGFR3 antibody gene?

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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

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?

John,

I appreciate the quick response, means a lot to me.
The IVIG treatment was a remedy for one of the previous diagnosis namely CIDP (Chronic Inflammatory Demyelinating Polyneuropathy), which seems to be incorrect.
I visited my neurologist last week, got the walk on toes, walk on heels, prick and tickle exam, discussed the potential of steroids, decided to skip due to side effects. The conclusion was to observe, use Gabapentin in case of flare ups.
I am extremely happy to be a patient of this neurologist, who after 14 years, visiting top doctors on the East Coast and spending thousands of dollars discovered the FGFR3.
Thank you again,

Pedro

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?

Hi Emo, my fellow FGFR3-er, makes me feel better that I am not alone suffering from this neuropathy thing.
IVIG - I had two rounds, multiple sessions in each round. First one was Gamunex-C, after multiple infusions, I got the Egyptian plagues reaction, I was visiting at the same time the cardiologist, the pulmonologist, the dermatologist and of course the neurologist. I was unable to walk a flight of stairs. To remedy rash, I was prescribed Prednisone, I would rather suffer from neuropathy, then take steroids again. Second one was Hizentra, no effect. The thought was, since Gamunex-C perhaps caused the plagues, I am allergic to this particular brand.
Plasmapherisis - done that, no effect.
I would have one neurologist in network of my insurance plan and one renowned outside and have the therapy by driven by the latter.
What works for me to dull he pain is minimal dosage of Gabapentin (I tried that for a week) and acupuncture (the magnets are the best)
One of the famed neuropathy specialists I visited told me, you keep teasing the neuropathy with all of these IVIGs and Plasmapherisis and you'll really mess yourself up ... but then again, he was not the one who prescribed the FGFR3 test.
My current in network neurologist (the one who prescribed the FGFR3 test and is quitting) gave me last week the walk on toes, walk on heels, prick and tickle test and concluded - observe the symptoms, take Gabapentin for flare ups and that's what I am going to do.
The symptoms feel and intensity fluctuate they are worse and they are better, but the overall tendency is a progressive decline.

I had the positive test in early 2021 after symptoms of CIDP and the positive nerve studies and spinal fluids. They blasted me with IVIG and cortesteroids. I couldn’t comb my hair or barely walk well at the time and awfully fatigued.
I was already on a heavy dose of Gabapentin for femoral nerve pain.
I’m now on a large dose of Hizentra weekly and periodic runs of oral Prednisone when any virus puts me down-just 3 times in the last two years. Still on the Gabapentin.

I have a life-no pain but a lot of fatigue and peripheral weakness and sensory loss cyclical with the wearing off of weekly infusions. I take a low dose of Ritalin for the fatigue.

I’m 73 and still working and am able to compete in agility with my dogs if I’m feeling well. But my health is like a full time job. PT is important. Acupuncture helps briefly plus a ton of herbs of unknown usefulness that makes my wife happy. Depression when I wake up and face my day haunts me.

My son just found out he has the fgfr3 gene after suffering with snf since he was 13. noe he is 22. the treatment for fgf3r is the ivig and rutuxin. My son is going to start the rutuxin in about a month and he has heard from people that it helps a lot. Ask your dr about that treatment.