Tag Archives: red skin syndrome

Day41 Red Skin Syndrome Strikes Again

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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.

Day36to37 Redness Calms Down

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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?

Happy holidays!

Day19to32 Eczema worsens and spreads with TSW

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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.

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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.

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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.

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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.

 

Doubted by Others

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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?

Cheating on TSW with Elidel

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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?

Day22 Scratch until you see red

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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!

Day21 Eyelid Dermatitis from TSW?

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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.

Day17&18 Burning from Steroid Withdrawal

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My skin rarely burns from eczema but when it does its usually because I’ve been a lazy bum and allowed my skin to dry out; It’s when I finally  slap on some creamy moisturizer that my skin feels like its on fire. That’s why I was pleasantly surprised when both of my lower arms began to burn after applying moisturizer these last 2 days. Its even odder because only my neck has burned in the past. Somehow I think its a possible side effect of topical steroid withdrawal. And remember those pimple like dots I mentioned in the first week of TSW? They came back with a vengeance in these last 2 days. I now have 2 large bumps that resemble pimples on my right arm and a few smaller pink bumps along my thighs. I truly wonder if other people undergoing topical steroids withdrawal have experience the same thing. If you have I would love to hear from you!

Lastly, I’m not sure if I have red skin syndrome but I decided to try to withdraw from it regardless so that people who are thinking about withdrawing from it will have the benefit of other people’s experience. The internet can be somewhat shady at times in that you don’t know what reals an what not. Anyways, good luck everyone!

Day14 of Topical Steroid Withdrawal

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So today I decided to post some pictures of my eczema following TS withdrawal.

???????????????????????????????Day 14!

The area of redness seems to have decreased today. Normally, the red spreads to my lower neck and at times, near the shoulder area. It’s also possible that I’m having a good skin day but I’m trying to remain hopeful.

Here’s a picture of my wrists where I have used significantly less topical steroid in comparison to my neck. You can see that its not as red as my neck. Its a bit wrinkly from steroid damage, I think. This is one reason why I think that I have red skin syndrome, because there seems to be a correlation between severity of eczema in terms of redness and frequency of steroid usage, but its hard to say whether the chicken or the egg came first.

???????????????????????????????Day 14

Update: Everything was fine when I wrote this post at night but when I tried to sleep I couldn’t because I suddenly got really flaky and itchy.

Has anyone every experienced a time when their skin was really good and then had a massive flare-up at night? Please comment :)

What happened when I left topical steroids behind?

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My update on red skin syndrome:

I have no idea if these are the side-effects of topical steroid (TS) withdrawal. I haven’t experienced oozing or a whole lot of burning, as other people have noted in their blogs. Perhaps it’s because I was on 0.2% hydroval or that my dreaded skin isn’t as addicted as it could have been when I decided to stop. So here are the out of ordinary things that happen during the 10 days I stopped TS:

Day 1 – My neck is very unhappy. It’s red, dry, and very flaky. I noticed red pimple like dots along my upper thighs, stomach and lower arms

Day2 – My eyelids have become flaky and dry. I managed to keep my neck well moisturized but it’s still red. It’s very hard to sleep because my neck is very itchy

Day3- I woke up to dry eyelids and a stiff and red wrist

Day4 – Dry flaky eyelids. Neck is pink, flaky and dry. A few red dots along my arm

Day5 to 8 – I will be completely honest and confess that I got lazy

Day9 – My neck is behaving well today. It’s a bit red but it is keeping in moisture pretty good and isn’t shedding skin like crazy. (lol, I just realized I called my own neck, “it”). I also took a bleach bath at night and it really made a noticeable difference in the redness on my neck. Hopefully, this is working for others as well

Day10 – My neck is behaving well today. It stayed pretty moisturized throughout the day at least until night hit. At night I had a really dry itch on my neck. Scratch scratch

Day11 – My neck hurts from turning. It feels so thin, I feel like my skin will break open and bleed. It’s along the front of my neck. It is also very sensitive today. It could be because I only had 3 hours of sleep

In my opinion, there does seem to be a basis for topical steroids addiction based on the red dots and itchy dry eye lids, which only popped up a day or 2 following my withdrawal. I can’t be 100% sure that I’m suffering the effects of topical steroids withdrawal, but hopefully this will help someone who is as confused as I am and experiencing something similar without the oozing.

I will continue to update readers! Hopefully this is a case of topical steroid addiction and not just a bad case of eczema because at least with the former, you have a chance of getting better by stopping steroids.