Reply To: New to Cidp? I think?

January 31, 2020 at 8:18 am

Thanks for the input, and the articles. I initially responded to iv steroids when I was first hospitalized. The third hospitalization steroids didn’t help as much so next came the ivig. Not really sure how the ivig is supposed to work, but on the days I get it I feel awful, and then the same for the next few days. I describe to family and friends as that you could wipe the floor with me. 2-3 days after the ivig I feel a little better, walking a little better, and usually 2-3 days before the next infusion gait is not that great.

Not sure how others respond to the ivig but I guess everyone is different?

Weight loss has been an issue for me as well. Lost 14 pounds first hospitalization, regained it back. When was re-hopitalized in October lost 10 pounds and have had a hard time regaining it back. Having a hard time maintaining my weight considering my ravenous appetite from the steroids. Usually by now with the holidays last month I would have put on 10 pounds but actually lost an extra few pounds. I guess if there is any silver lining with this at least the cidp helped keep the holiday weight off.