I'm about 12 weeks into the initial CIDP symptoms and am 1-week post first-treatment. At some point in the last couple of months - I cannot remember if it was pre-or-post onset of initial CIDP symptoms - skin on my forehead and near my hairline started getting dry, slowly. And then started getting flaky. Then it covered more of my forehead and a little around my nose. Now behind my ears is dry and flaky.
It is really unsightly and so I use lotion to help.
After either my 2nd or 3rd IVIG infusion ~10 days ago my wife noticed my face was really flush, like I had been sunburned. It still is. It is almost like the lupus face pattern, but way less noticeable. Maybe more like I was wearing sunglasses and sat in the sun.
I have an appointment with my primary care doctor in 2 days. But I'm curious if anyone else has experienced this associated with CIDP. For all I know this is just a big coincidence. Or having CIDP is enough of a kick to the body to make other conditions that your body was handling to rear their ugly heads.
I recently went through a week of IVIG and I am now feeling the side effects the same as yours. First, my hands started drying out and now are peeling all the skin off my palms. My neck looks like a really bad sunburn and I'm afraid that will start peeling next. It has already started peeling behind my ears.
This was my second course of infusion. The first was last May and I had a reaction to that one but the treatment helped my numbness. The neurologist held me off til now for the second round and has had me on prednisone 5mg daily since then. Not sure what she will try next but I am certainly miserable now.
I went to my primary care physician yesterday. Someone needs to coach health care professionals on things not to say. She looked at my skin and said "Hmmm, I've never seen anything quite like this before.". Niiiice, thanks for that. Now I'm brimming with confidence at whatever you say next.
Ultimately she said it was probably just dry winter skin, ie sebhorrea. Hopefully it is. I just find it coincidental for this to happen now. In my 39 years on the planet the worst rash/dryness/whatever is on my face smack dab in the 8-12 weeks period where I was diagnosed with and treated for CIDP.
I was prescribed with some kind of a steroid cream or lotion that I need to pick up today. I'll give that a shot.
My palms have just about peeled off leaving them red and sore. My neck seems to be next or maybe my arms.I've been around for 70 yrs and I can assure you the old Drs were better than what they are putting out today. Modern medicine has come a long way but they forgot to teach bedside manners.I can only hope that we can get over this miserable illness. Two yrs ago I was very healthy for my age and now I am almost a cripple.
jobe said:
Thanks bbirder.
I went to my primary care physician yesterday. Someone needs to coach health care professionals on things not to say. She looked at my skin and said "Hmmm, I've never seen anything quite like this before.". Niiiice, thanks for that. Now I'm brimming with confidence at whatever you say next.
Ultimately she said it was probably just dry winter skin, ie sebhorrea. Hopefully it is. I just find it coincidental for this to happen now. In my 39 years on the planet the worst rash/dryness/whatever is on my face smack dab in the 8-12 weeks period where I was diagnosed with and treated for CIDP.
I was prescribed with some kind of a steroid cream or lotion that I need to pick up today. I'll give that a shot.
It's from the CIDP and comes from autonomic nerves not working correctly. Sometimes CIDP effects the nerves that normally trigger the moisture producing glands in your body and they just either slow down production of moisture or stop all together. What you need is a CREAM not a lotion. What's the difference? Lotions are water based and creams are oil based. Creams help seal in whatever moisture/oil your skin is producing and basically adds oil to your skin slowing down the evaporation process. Lotions evaporate and take more of your own moisture with it. Cetaphil cream is a good one, I think they also make a lotion so be sure to the cream. You can get it at Walmart/Target for around $10.00...it comes in a 1# tub and it's hypoallergenic meaning even people with the most sensitive skin can use it.
Thanks for the advice Sunshine. I'll be sure to grab that one after my prescription runs out.
I was prescribed with a .05% Desonide cream (or lotion?). Even with insurance it is like $50, so not cheap. I've been using it just a few days now and have seen significant improvement.
After this runs out and if the problem comes back I'll try the Cetaphil cream.