Gee, Lots of folks have lots of opinions?

October 27, 2008 at 6:47 pm

For me, when I first started on IVIG, I had lost over 25 pounds due to loss of appetite and lethargy from the CIDP.
Each and every time I got a round of infusions, I would gain exactly four pounds of weight. Sort of equal to the IV pre-meds and IV liquids infused into me…regardless of my well-hydrated pre-infusion weight. I would lose two of that four pounds over the next month only to be repeated again with the next infusion. It DID add up? My rationale for it is that IT IS A BLOOD PRODUCT and would not be rejected as excess fluid by my body other than thru normal blood dispersion means. Makes sense to me, I don’t know if to anyone else tho. I’ve lost lots of weight thru other issues tho and it’s a two edged sword… we shall find out after heaps of tests up blind alleys?
And any subsequent weight loss is akin to the life span of IVIG in our bodies [w28+/- days]
Yes! All that weight seemed to grow in my abdomen too! It would get to the point that I’d hate to see doc’s not informed about CIDP and IVIG as they’d become disturbed about it. My neuro just went…Hummm…OK. And wasn’t worried as there weren’t any other s/e’s.
Changing brands of IG did help stop this issue tho, it depends on the mixture that you get and how well you tolerate it I think.
That you went slower this last round of infusions and felt fewer side effects makes sense to me! Keep on that track? Rates make such a big difference in how well we recover and avoid side effects. That all is well documented.

CIDP Kid? Do question your docs more about the ‘autonomic’ aspects of Abby’s issues, gastroparesis and other issues can and do occur which are NOT fun for adults to encounter let alone a 12 year old girl! Yes, there are meds and some therapies that can help, but do approach it all fully informed and with caution. As for Gas? Have her tell folks that she’s working on her own ‘power plant’ or something…that’d get them thinking at least?