Nothing new here, just waiting on my appointment @ Duke in Sept. I’ll post again if anything changes.
Thanks for reply, I am not sure that they are planning to offer me IVIG again because of the anemia. I have to do something soon because I seem to be getting worse week to week. I guess not knowing what’s next is a little scary not knowing. Thanks again
I am new to CIDP and had my first treatment with IVig in May. After my treatment I became short of breath and had chest pain with any activity. By day 7 I found myself going to the ER with DX of anemia and put thru the ringer for elevated CPK = full Cardiac work up. I also had small blisters covering both hands,all of the skin pealed of within 2 weeks and still small blisters popping up on my hands and feet more than one month later. My Neuro is sending me to a Neuro Muscular specialist and my rheumatologist thinks I will require nonstandard treatment but I am not exactly sure what he means by that. I am glad to find others willing to post details about their challenge’s with CIDP.
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