Hello @rwinney , I appreciate your support.
Autoimmune diseases, Chronic pain, Healthy Living, Neurology (brain and nervous system), Women's health issues
Member not yet following any Pages.
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.
Hi @darlia, I have the elevated FGFR3 antibody also. My neurologist sent my blood to St Louis also and this was the diagnosis. I have had severe peripheral neuropathy in my feet for a few years which they thought was related to diabetes but apparently it is not oh, it has been uncontrolled for at least 2 years now and create so much pain for me but I had to stop working as a nurse due to all of the medications I have to take to help me get through each day. I also get very sharp nerve pain in other places like my hands my fingers my thighs my ankles just wherever it decides to hit can get. I started IVIG therapy for months ago and I think that it's helping a little bit but I am suffering quite a few side effects so we will see how things go. I will always available to talk to if you want to talk more about our symptoms and see how they compare. Take care, Kim
I am the same age as you are. My neurologist initially recommended the IV Solu-Medrol but I didn't want to take it because of its tendency to cause weight gain and I'm already overweight. So he started me on the fgfr3 infusions that I get it home by a home infusion nurse the four days a month every month. I think that it is helping a little bit stop. Enough to give me some hope. I've only had four treatments. I take 1800 mg of Gabapentin three times a day, hydrocodone twice a day, and morphine once a day along with some other medications that are supposed to help with nerve pain. It also helps if you can rub Diclofenac sodium gel on the spots that burn. That seems to give me just a little bit of relief sometimes.
Hello, I was diagnosed with small fiber poly neuropathy and have had my first treatment of IVIG therapy. The pain and burning is intensified even more than before. This disease has affected my whole life in many ways. I can't find much info on it. Does anyone else deal with this?