FGFR3 levels are high any treatments?

Posted by doctorshelley @doctorshelley, Sep 2 6:30pm

I have FGFR3 levels which are 1000 points over normal. The SFN pain is debilitating. Was told IVIG will not help this . I also have 3 heterozygous genes which are of unknown significance. Am desperate for more information or treatment. Thinking of going to ketamine clinic here but not really happy about that idea. Any info would help.

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?

REPLY
@johnbishop

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?

Jump to this post

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.

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@doctorshelley

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.

Jump to this post

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/

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