FGFR3 levels are high any treatments?

Hello @doctorshelley, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. There is another discussion where @eoglover mentioned her husband has the FGFR3 antibody over 9000. I'm not sure what treatments have been used but she may be able to share more information.

-- FGFR3 ANTIBODY: https://connect.mayoclinic.org/discussion/fgfr3-antibody/

I also found a couple of articles that may provide some information for you.
-- Use of Intravenous Immunoglobulin in Small Fiber Neuropathy associated with FGFR3 (P2.433): https://n.neurology.org/content/90/15_Supplement/P2.433
-- Clinical features with anti fibroblast growth factor receptor 3 (FGFR3) antibody-related polyneuropathy: a retrospective study: https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-021-02090-2

Have you done any research into ketamine treatments?

Thank you so very much. I am going to direct these articles to my neurologist. I have not yet looked into ketamine. There are several clinics here. Have to start research. Some people on other boards have tried with success.

There is another discussion you might find helpful for ketamine infusions.

-- Questions to ask about ketamine infusions: https://connect.mayoclinic.org/discussion/questions-to-ask-about-ketamine-infusions/

@colleenyoung posted the following link in the discussion that might provide some help with what questions to ask when you talk with the ketamine clinics -- 10 Important Ketamine Infusion Questions To Ask Any Ketamine Clinic: https://kureiv.com/ketamine-infusion-questions/

I would like to report that after 3 treatments of ivig for my sfn I have had some pain relief! I have elevated antibodies that I ordered through Wash U.

I would also like to get a reference for the current ongoing study at Mayo for this. I would like to ask some questions of the people leading the study. Can the mentor connect me? Thank you.

Shelley, that's great to hear that IVIG treatments appear to providing some pain relief. Fantastic.

I believe you may be referring to this research study being conducted by Loyola University (not Mayo Clinic).
- IVIG in the Treatment of Autoimmune Small Fiber Neuropathy With TS-HDS or FGFR-3 Antibodies https://clinicaltrials.gov/ct2/show/NCT04153422

Recruitment for the study has been suspended because the principal investigator is leaving or has left Loyola University.

In addition to CIDP tests, I had a positive test for FGFR3 2020. My symptoms did not include pain but were bilateral sensory/motor neuropathy and fatigue. IVIG and now SCIG with periodic steroids arrested the advance of the disease.

My son has suffered with sin and we just found out about the fgfr3 gene is also causing his immune system to attack itself. Now the IVIG helps my son for about a day and a half but soon for the fgrf3 he is going to try rutuxin which is an infusion which he will take along side the ivig. from other patients at his doctors office people have done well with these 2 drugs. the rutuxin is very expensive so my son had the office contact the company and they are doing it for free due to my sons yearly earnings. My son has had this since he was 13 and now he is 22. He has debilitating pain and will try anything for it to stop. The gabapentin helps please don't stop it.Also the IVIG takes a little while to get used to your body so you have to give that some time.
concerned mom

Hi! what is SCIG? My son has sfn and fgrf3. he is on ivig and will start rutuxin in about a month. he is only 22 and has had this since he is 13.
thanks

That is NOT TRUE. IVIG does help with son and the fgfr3 gene. The ivig gives my son 1 to 2 days of feeling more human than in delbilitating pain. Now his neurologist wants to try rutuxin for the fgrf3 next month. I will let you know what happens. But definitely try the IVIG it works! promise!