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TS-HDS Antibody and Small Fiber Neuropathy

Neuropathy | Last Active: Nov 13, 2023 | Replies (156)

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@jasonarnsberg

Has anyone had IVIG treatments

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Replies to "Has anyone had IVIG treatments"

There is a discussion on the topic here...

IVIG Infusions - https://connect.mayoclinic.org/discussion/ivig-infusions/

I did see a clinical trial on the treatment - IVIg for Small Fiber Neuropathy With Autoantibodies TS-HDS and FGFR3: https://www.centerwatch.com/clinical-trials/listings/212909/ivig-for-small-fiber-neuropathy-with-autoantibodies-ts-hds-and-fgfr3/

Yes I has my first one on Monday Feb. 27th for immunoglobulindeficiencyanemia. My blood level of IGg was 194. Doctor said anything under 400 requires treatment. I am getting 400mg/kg every 4 weeks. I was very well hydrated and apparently a must to prevent nasty headaches which can land you in the emergency room I've heard. There is a Facebook site that helped me so far called IVIG saved my life or something like that. I believe my deficiency was related to chemo drugs. I'm upset right now as I don't want this to be for life as some people say it is. I had a headache for 2 days but kept Tylenol and Advil on board. Apparently it is used for many things. I never knew all this and I am a nurse since 1982. Not working now. Hope this helps. This is my first post so hope I learn to use this site. Best wishes to you.