1. < Neuropathy

Anyone have the FGFR3 antibody gene?

Posted by Darlia @darlia, Jul 21, 2017

I was recently diagnosed with the FGFR3 ANTIBODY GENE. It is RARE.
My Neurologist found this by sending my blood sample to a special St. Louis lab. This means my NEUROPATHY is being caused by this ANTIBODY which up till this discovery, my neurologists said my cause for neuropathy and gastroparesis was UNKNOWN! I don't have diabetes.
1. I am now looking for others who have this incurable ANTIBODY. I've been told the only treatment I can get is an IV Solumedrol steroids series for 6 months. I am concerned though about side effects and reluctant to have this treatment. Any others who have please give me your experience. 2. Also, I am looking FOR any info I can find about how this can be dealt with in any other way, even if there is anything of a homeopathic nature.
3. I am also looking for if there are any clinical studies.

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

david1959 | @david1959 | Nov 3, 2021

Hello John, Thank you for the links. Yes I have tried numerous therapies over the years ( prior to diagnosis ) with varying results. To date IVIG has helped the most. I have made life style changes over the years, voluntary and involuntary, to try and modulate the severity of this disease. I do wish there was more research completed involving AntiFGFR3 autoantibodies ( My level is around 35000 ) in order to facilitate a possible cure. I am hoping the St. Etienne study has some answers.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Nov 3, 2021
In reply to @david1959 "Hello John, Thank you for the links. Yes I have tried numerous therapies over the years..." + (show)
@david1959

Hello John, Thank you for the links. Yes I have tried numerous therapies over the years ( prior to diagnosis ) with varying results. To date IVIG has helped the most. I have made life style changes over the years, voluntary and involuntary, to try and modulate the severity of this disease. I do wish there was more research completed involving AntiFGFR3 autoantibodies ( My level is around 35000 ) in order to facilitate a possible cure. I am hoping the St. Etienne study has some answers.

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Hi David @david1959, I'm not sure if you saw my post in another discussion on the following Foundation for Peripheral Neuropathy webinar. It's this afternoon 2PM Central time. If you have time you might want to check it out.

FPN Webinar: Biomedical Research 101 — Wed, Nov 3, 2021 2:00 PM – 3:00 PM CDT

Patients and scientists alike recognize the importance of scientific research to increase the understanding of peripheral neuropathy, lead us to new treatments, and give us hope for the future. But do you understand fully the research process and where patients can play a part?

Please join us for our upcoming webinar, Biomedical Research 101, to learn the basics of biomedical research terminology, to understand the basics of the clinical research process, and how to find out about current peripheral neuropathy research. Kristy Townsend, PhD, will provide a quick course in research basics, as well as an update on some of the recent research projects focused on peripheral neuropathy.

A Q&A session will follow the presentation.

Register here: https://register.gotowebinar.com/register/6924826904544731149

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tricia7681 | @tricia7681 | Feb 15, 2023
In reply to @darlia "Thank you John for the reply and the welcome. I was researching on the Mayo Clinic..." + (show)
@darlia

Thank you John for the reply and the welcome. I was researching on the Mayo Clinic website because I have paperwork I am filing out for my attorney here in Missouri where I live now on my SS disability case and I had gone to the Mayo Clinic as a patient when I lived in the Phoenix area for many years. They want you to list your prior medical help so I listed Mayo. I then saw that there was the support community and decided to give it a try. I was told by my Neurologist whom I see here at the University of Missouri Hospital in Columbia, MO, that my neuropathy is FGFR3 Neuropathy, but had been told prior that after my nerve tests it is Peripheral Neuropathy. I have in my feet and legs. It started in my left leg just randomly as a spot on my left calf that was kind of numb. That was back in 2011 or 2012 I believe. It has progressed to my heels being numb in spots and into parts of my feet, mostly the left. Now my hands are having tingling on and off too. My right leg has a little, but not much as of yet. The only treatment I have been told so far that there is as this is a rare condition and that the medical community has just been made aware of this in the last 2 years, he said, is an IV SOLUMEDROL steroid that he wants to do for 6 months and then says I won't even see any diff until at least 2 yrs!. Or there is another treatment that involves being administered by IV that has fractions of blood, immunogentherapy or something. I spelled it wrong. Anyway, it is not an option for me because the treatment is likely to cause renal failure and I only have one kidney as I am a cancer survivor to have lost my right kidney to renal cell carcinoma in 2008. So, at this point, he says that the steroids are the only treatment. I asked what if I DID NOTHING? He says, well then for sure it will just progress. The steroid treatment though is not a guarantee of help either, it is kind of a shot or chance. I also have the gastroparesis which until now had an unknown source because I am pre-diabetic, but NOT diabetic. Normally GASTROPARESIS happens because of diabetes. So, if I don't do anything, this condition is just probably going to get worse, The downside is that I have to watch everything I eat, most of the time, I am pretty good, but it is hard to not eat any raw veggies or fruit until they are broken down like in a smoothy which is ok. The key is to have the food already broken down, I eat pouches of baby food, which surprisingly is pretty good nowadays. LOL. I like the fruity/sweetpotato ones or the fruit mixed with other veggies. I also like from Walmart the Organic SuperFood dehydrated fruits and veggies and probiotics mix. It is very green and it has good spirilina and alphalfa in it. I mix it in Pineapple or Grape Juice. I get my vitamins that way too.
So, right now I am waiting to get an abdominal MRI and checked out out by the Nephrologist that my one kidney is okay to undergo the start of the steroid treatment. But in the meantime, I am searching for other help. Reading about the side effects of the steroidal treatment is scarey and I am very reluctant to do it. Any info you can provide on this would be much appreciated. Thanks again!
Darlia

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Hi there, I was tested last June at the same lab as you. My levels were "slightly" elevated. I'm getting the TS-HDS done by a swedish lab since it can't be done in US right now. My small fiber neuropathy is non length dependent and I don't have diabetes just hashimotos. My pain is getting worse. I'm on 125mg of lamotrigine and 20 mg of namenda. It's keep it bearable, but I have really bad weeks. It's all over my body.
Tricia

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seanywonton | @seanywonton | Feb 22, 2023

I just found your post because I was looking into a clinical study for myself, and you have to have the antibody you are mentioning, or another antibody, that is causing Small Fiber Neuropathy. I don't know if that's the disorder you have, but take a look at the study. There may be some helpful info even if that's not what you have (this intravenous treatment they are studying) . Best of Luck.
(It's not letting me post a link, so search for this: "IVIG in the Treatment of Autoimmune Small Fiber Neuropathy With TS-HDS, FGFR-3, or Plexin D1 Antibodies")

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 22, 2023
In reply to @seanywonton "I just found your post because I was looking into a clinical study for myself, and..." + (show)
@seanywonton

I just found your post because I was looking into a clinical study for myself, and you have to have the antibody you are mentioning, or another antibody, that is causing Small Fiber Neuropathy. I don't know if that's the disorder you have, but take a look at the study. There may be some helpful info even if that's not what you have (this intravenous treatment they are studying) . Best of Luck.
(It's not letting me post a link, so search for this: "IVIG in the Treatment of Autoimmune Small Fiber Neuropathy With TS-HDS, FGFR-3, or Plexin D1 Antibodies")

Jump to this post

Hello @seanywonton, Welcome to Connect. I see that you wanted to post a link and thought I would share the link for you since new members cannot post links for a short period of time to prevent spamming and advertising in our discussions.

--- IVIG in the Treatment of Autoimmune Small Fiber Neuropathy With TS-HDS, FGFR-3, or Plexin D1 Antibodies: https://clinicaltrials.gov/ct2/show/NCT04153422.

Have you signed up for a clinical trial? Do you mind sharing a little more about your neuropathy diagnosis?

REPLY
1 reply
seanywonton | @seanywonton | Feb 23, 2023
In reply to @johnbishop "Hello @seanywonton, Welcome to Connect. I see that you wanted to post a link and thought..." + (show)
@johnbishop

Hello @seanywonton, Welcome to Connect. I see that you wanted to post a link and thought I would share the link for you since new members cannot post links for a short period of time to prevent spamming and advertising in our discussions.

--- IVIG in the Treatment of Autoimmune Small Fiber Neuropathy With TS-HDS, FGFR-3, or Plexin D1 Antibodies: https://clinicaltrials.gov/ct2/show/NCT04153422.

Have you signed up for a clinical trial? Do you mind sharing a little more about your neuropathy diagnosis?

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Thanks for posting the link, John. I am trying to sign up for this clinical trial but it would be my first. I SFN all over my body. No known cause. I'm going to see if I have already been tested for the anitbodies listed in the clinical trial and if not, I'm definitely getting those tested for regardless of whether I make it in the trial or not.

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sunflowergirl050710 | @sunflowergirl050710 | May 4, 2023

I found this thread today. I was just told my FGFR3 level was 10,000. Was IVIG helpful for anyone? I am a first grade teacher and I am worried about the side effects of IVIG while I am teaching. Just to understand, it sounds like the FGFR3 can be the underlying cause of small fiber neuropathy?

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | May 4, 2023
In reply to @sunflowergirl050710 "I found this thread today. I was just told my FGFR3 level was 10,000. Was IVIG..." + (show)
@sunflowergirl050710

I found this thread today. I was just told my FGFR3 level was 10,000. Was IVIG helpful for anyone? I am a first grade teacher and I am worried about the side effects of IVIG while I am teaching. Just to understand, it sounds like the FGFR3 can be the underlying cause of small fiber neuropathy?

Jump to this post

Welcome @sunflowergirl050710, It's difficult not to worry about a treatment when you are not sure of possible side effects. I don't have any medical training but from what I've read I'm not sure it would be the underlying cause of small fiber neuropathy. Here's some information from a clinical trial on the topic.

"The antibodies to TS-HDS and FGFR-3 are detected in up to 20% of patients with otherwise idiopathic small fiber neuropathy, but are rare in patients without small fiber neuropathy."
--- IVIg for Small Fiber Neuropathy With Autoantibodies TS-HDS and FGFR3:
https://clinicaltrials.gov/ct2/show/NCT03401073.

There are a couple of discussions that might be helpful for learning what others have shared about IVIG infusions:
--- IVIG Infusions: https://connect.mayoclinic.org/discussion/ivig-infusions/
--- Chronic Inflammatory Demyelinating Polyneuropathy and IVIG reactions: https://connect.mayoclinic.org/discussion/cidp-having-ivig-reactions/.

Do you mind sharing what kind of neuropathy symptoms you have or other treatments you have tried?

REPLY
emo | @emo | Jul 3, 2023
In reply to @sunflowergirl050710 "I found this thread today. I was just told my FGFR3 level was 10,000. Was IVIG..." + (show)
@sunflowergirl050710

I found this thread today. I was just told my FGFR3 level was 10,000. Was IVIG helpful for anyone? I am a first grade teacher and I am worried about the side effects of IVIG while I am teaching. Just to understand, it sounds like the FGFR3 can be the underlying cause of small fiber neuropathy?

Jump to this post

Hi- I was wondering if you ever went forward with IVIG? I was diagnosed with the FGFR3 antibody in late 2019/early 2020. By the time we got around to discussing treatment options, it was covid lockdown and the idea of going out for infusions or doing home infusions with a stranger sounded crazy.

But then my neurologist left and so far there hasn’t been a provider willing to implant her plan of care or who felt knowledgeable. I’m considering it again, but because the blood test isn’t fda approved and neither is IVIG for this purpose, my insurance may not cover it and it’s kind of a toss-up whether or not it would help. So I’ve just been sitting on it. I wanted to ask what your experience has been?

REPLY
1 reply
sunflowergirl050710 | @sunflowergirl050710 | Jul 3, 2023
In reply to @emo "Hi- I was wondering if you ever went forward with IVIG? I was diagnosed with the..." + (show)
@emo

Hi- I was wondering if you ever went forward with IVIG? I was diagnosed with the FGFR3 antibody in late 2019/early 2020. By the time we got around to discussing treatment options, it was covid lockdown and the idea of going out for infusions or doing home infusions with a stranger sounded crazy.

But then my neurologist left and so far there hasn’t been a provider willing to implant her plan of care or who felt knowledgeable. I’m considering it again, but because the blood test isn’t fda approved and neither is IVIG for this purpose, my insurance may not cover it and it’s kind of a toss-up whether or not it would help. So I’ve just been sitting on it. I wanted to ask what your experience has been?

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Hello! I am no longer using hotmail. Thanks, Kelly

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