After 5 days of normal skin, the dreaded redness on my neck and hands has returned. I’ve been having this horrible urge to scratch my neck and hands the entire the day. This sensation of itchiness feels different. It almost like a burning itch instead of a dry itch. My neck feels both red and raw. I had always expected the redness and eczema to return because I know from reading others people’s blogs on red skin syndrome that it can often involve an initial period of worsening eczema followed by alternating periods of calm and less severe eczema flare-ups.
Sometimes I sit there and wonder whether if I will ever reach a point where I won’t have to deal with eczema on my neck anymore. I want to say its a tough life, but I know I have no right to complain given how there are worse things that could have been given to me. Hopefully, other people are showing good signs with topical steroid withdrawal as well.
Today is the first time in a while that my neck has not been flaming red. Although my neck is still pink and dry, its rare to see the redness calm down by itself without me having to take bleach or epsom salt bath. It must be the stress relief from Christmas holidays or that topical steroid withdrawal is slowly showing good signs. Either way this makes for a perfect Christmas holiday.
Just a quick update: Its day 37 and things continue to look good. My neck is much smoother and the redness has calmed down significantly although not completely obliterated. It only took 37 days of TSW to see my skin calm without the help of topical steroids. There’s a part of me that thinks that it might be due to the fact that I’m not spending my days in the lab, and that I’m getting much more sleep lately. I will continue to update to see how long this persists.
Out of curiosity, for those undergoing TSW how long before you began to see improvements in the skin?
One of the most difficult things with topical steroid withdrawal (TSW) is preparing yourself mentally for the periods of low. It was 2 weeks into TSW before I saw the full effects. Not only did my eczema spread to new areas it worsened in pre-existing areas. In particular, my hands and wrists took the biggest hit. It is quite common for me to scratch my wrists until they bleed, something that did not happen prior to TSW.
Below is a picture of my wrists on day 22. The red line shows the boundary of where the eczema used to be and the green line shows where it has spread to since TSW. You can’t really tell from this picture, but the whole area within the boundary is noticeably red and not smooth (I promise I will post a better one soon). The black arrow shows skin discoloration from eczema.
It also spread past my wrists towards my elbow. If you look at the lower region of my arm, the skin is dryer and redder on day 22 than day 14.
Day 14 Day 22
When I took the pictures on Day22, I still had those pimples I was mentioning in previous posts. There’s quite a bit of red bumps along my thigh.
My neck hasn’t gotten any better. In fact, I’ve been having more periods of skin shedding than usual. My eyelid dermatitis did get better but it’s still a bit dry at the corners.
Anyways, I want to apologize for the bad camera. For some reason it seems incapable of capturing the redness on my skin.
The conversation went like this:
Me: ”I think I have red skin syndrome”
Friend: “What is that (shocked expression)”?
I point to my red hands and began to explain but before I can finish she replies:
“I think you have been self-diagnosing yourself again; it’s red because you’ve been scratching”
It’s frustrating because I feel that she being my closest friend is never going to understand what I go through on a daily basis. She doesn’t know the big effort I make every morning and night to make sure that my skin is well moisturized. I wanted to tell her that my eczema isn’t magically spreading as soon as I stopped topical steroids and that it’s the spreading eczema caused by TSW that is causing the scratching and not the other way around. However, I didn’t because, in truth, I can’t blame her for it. Part of it is because it’s hard to explain that I have red skin syndrome, when I myself cannot say with confidence that I have it for sure. To make matters worse, I can’t get a diagnosis because it’s so medically unrecognized. It’s sad that it easier for people to believe doctors when no one knows better than yourself if you have it. I’m not upset at my friend (she’s the greatest). I only hope that one day red skin syndrome will be more widely recognized by doctors just like any other disease.
Has anyone had similar experiences?
I have a confession. I had a Christmas party to attend and my neck was red from inflammation so the day before and of, I applied Elidel, a non-steroid based medication for eczema. I didn’t want to go to the party with strangers and have them asked me why my neck was red and flaky. I managed to tone down the redness a little bit and I didn’t shed like crazy during the party.
My only concern stems from another blogger who is going through withdrawal from Elidel. I’m not sure if topical steroids and Elidel work under the same mechanism. It makes me wonder if I have just sabotaged myself. Just in case, I’m not going to do it again but I do wonder if someone else has done something similar.
Has anyone else cheated during topical steroid withdrawal?
When I read about sleepless nights due to eczema, I always found it hard to imagine that eczema could be that bad for someone given how bad it already is for me. In the 3 weeks that I’ve stopped topical steroid (TS), I have had 3 nights where I’ve had trouble sleeping. I would be really tired and then get to bed and then start scratching like crazy. And you know once you start you can’t stop. It would be about an hour of scratching. I’ve had one of those nights yesterday. I had to grind my nails and put a pair of long fuzzy socks over my hands so that I could stop scratching enough for me to fall asleep. Somehow those socks always end up on the floor. (I’m thinking about poking some finger holes in them). I feel like my trouble sleeping has been more frequent and severe since topical steroid withdrawal (TSW). The worst part is waking up with bloody scratches, that make it painful to move.
But even with that sleepless night, I managed to have a good skin day today. My flaky eyelids also disappeared. I feel really happy and it makes up for the lasts 3 days. If anyone has suggestions for falling asleep when your having an itch attack, I would love to know! I feel bad that I haven’t replied to any comments yet, but I’ve been just so overwhelmed these last few days. I just wanted to let you know your comments are appreciated and makes it worthwhile to write about my experience. Thank you!
Today, I woke up with extremely dry and flaky eyelids. There’s also a dry itch around my eye. I noticed some dryness a few days ago but it was not this bad. It’s a horrible experience because the flakes land on my eyelashes and then I end up blinking like a weirdo. My eyelids aren’t necessarily red or inflamed, as suggested in pictures for people undergoing TSW. I’ve also noticed that my eyes were very dry but it could just be the winter weather.
Has anyone else experienced something similar? I would love to hear from you.
You’re going to see a post about Day 19/20 soon, which have been hell but I haven’t gotten down to writing about it. This is truly the worst week of TSW thus far.