April 9, 2010 at 10:52 pm

Hi Cathie,
My daughter did not respond to IVIG. She had a series of 5, after the 5th IVIG infusion she became remarkably worse. Her diaphragm nearly stopped working and her breathing became labored, she was put in ICU and for a while was in between being ventilated and a bi-pap. By this time she could not sit up, could not do anything with her hands, not to mention she had not been able to walk since Feb of that year. Bottom line the IVIG was not effective at all, no one can say why. That was 2 years ago. Her dx CIDP.

Medical team asked me to agree to PE (fortunately I had red about it and knew what it was). After first series of 5 PE there was visible improvement in her hands and she could sit up, although by then her hands had lost any fine motor skills. Now, 2 years later, she receives PE 1 x every 3 wk, and once in a while she gets a series of 5 (I won’t even go into how that happens). By the end of the 3 wks. some of her symptoms are starting to return. Given her insurance situation, we are lucky she is getting PE 1 x 3 wk and are worried about losing that.

Pain and other problems I won’t go into here are ongoing. Lots of pain. We may have found a new pain mgmt doc that we have to pay, but if it’s helpful I’ll dig up the $$ somewhere.

So, bottom line is PE is effective for her CIDP IVIG was not and no one can even speculate as to why.