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Anyone have the FGFR3 antibody gene?

Neuropathy | Last Active: Dec 17, 2024 | Replies (148)

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@lisalucier

Hi, @kim61 - thanks for sharing your diagnosis with elevated FGFR3 antibody and your experience with intravenous immunoglobulin therapy (IVIg).

Will you share more about what side effects you are having from the treatment?

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Replies to "Hi, @kim61 - thanks for sharing your diagnosis with elevated FGFR3 antibody and your experience with..."

Hello @lisalucier, yes I would be glad to discuss my side effects with IVIG treatment. The first three months I basically had headaches for two or three days during and after the infusion. After my last infusion which is my fourth one, I've been feeling much worse until today and I am 1 week and 1 Day post infusion today I have very dry skin, I have developed blisters on my face that have a very clear fluid inside of them that pop and turn into scabs, I have been feeling very tired and sick to my stomach with a lot of bloating and belching. But on the upside of things I do get moments a very little pain for the first time in years. I do get a lot of zingers which are like electrical shock stabbing me in different places all around on my body particularly in my lower extremities but also in my hands. I put a call in to the neurologist office to see if maybe there can be some additional assistance with managing the side effects because I don't want to stop the treatments but I don't like how this is making me feel.