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Anyone have the FGFR3 antibody gene?

Neuropathy | Last Active: Jul 31 10:32am | Replies (147)

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@kim61

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.

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Replies to "Hello @lisalucier, yes I would be glad to discuss my side effects with IVIG treatment. The..."

@kim61 - Patients are put in such difficult positions having to identify and decipher between treatments and/or medications being beneficial, successful or worth it. What a grind it is.

I give you credit for persevering and trying IVIG. Thank you for the feedback on this procedure. It is helpful. The best is wished for you as you move forward.

Rachel

Hi, @kim61 - wanted to check in with you and see if your neurologist had some suggestions for dealing with the side effects you were experiencing from your IVIG treatment?