Hi guys
My husband had a bad reaction after his 7th IViG infusion. Started as a rash on his palms and soles of his feet almost like tiny blisters under the skin. Then they started severely peeling and cracking. Painful and skin keeps falling off. We have been using cortisone cream and heavy moisturizer then putting on glove and socks for a week. No real improvement. Anyon else have this and if so do you have any recommendations to help heal it faster.
Thanks Roo
Yes Roo, same thing here.
From reading your reports, both your hubby and myself contracted a mild version, I was diagnosed in Dec 2015.
I was paralysed from the shoulders to the waist but still had some movement in my legs and my breathing wasn't affected.
Within hours of developing the symptoms I was on a 5 day course of Octagram. After that I rapidly regained my strength and was out of hospital after two weeks as I could walk around and feed myself.
However once I had finished the IV course, and I could walk a bit, I started to develop two strange symptoms; redness in the face and extremely itchy little blisters on my hands. I asked for and got some cortesone creme but it did nothing and I found the only relief was to run hot water over my hands to take away the sting.
Unfortunately, the hot water in the hospital is limited to a certain temperature, so it would take a long time to produce the relief I was seeking and the other patients in my ward must have thought I had some sort of compulsive behaviour problem, standing at the handbasin every hour for 10 minutes at a time washing my hands over and over.
This itchyness lasted about 10 days.
The peeling problem was all over my head. It started with my face turning bright red similar to sun-burn and then, just like sunburn I started peeling. It was more like dandruff than sheets of skin, but was from my neck up and all over my ears and head.
This continued from week 2 to week 4 and my relief was gained by Selson Blue (anti dandruff shampoo) contains an ingredient not found in other brands (selenium sulphide), and by using it wash my head and face 6 times a day quickly cleared up this flakey dandruff all over my face, neck and hair, and the associated itch. After each use I would moisturise my face using my wife's Nivea cream and went through an entire tub, but I had the softest face at the end of it.
I have been diagnosed wirh CIDP that affects my feet, and manifesting with a burning, stinging sensation and some loss of balance.
After treatment by means of three series of administering IVIG, large itchy blisters apeared on my upper arms and back, with skin peeling in sheetsf rom the palms of my hand.
Treatment by means of steroid creams was ineffective.
On advice of a fellow suffererer, I took 80mg of predisòne orally once only (I weigh 83 kg and am 1.8 metre tall).
Almost immediately itching stopped and the blisters healed. But four years later I still have scarring.
My CIDP is now under control with one Cellsept 250mg twice daily. The only downside is thinning of skin which bleeds easily, and the need to avoid exposure to direct sunshine.
Yes! I understand. I come out in itchy spots sometimes after an infusion. If I can’t deal with them using a topical cream, I go to Prednisone for a few days and then cease using it. This normally deal with the itchies.