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.

Lavender Essential Oil for Eczema

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lavender Does lavender essential oil help with eczema?

I remember coming across a post about using lavender essential oil to calm that troubling itch at night. Thus, when I came across this cute little stand selling essential oils, I decided to give it a good try. Every night for the past week, I’ve been putting a few drops onto my pillow case. I also, soak a few drops onto a piece of fluffy cotton and place it near where the mist comes out of the humidifier hoping somehow that it would lift the scent of lavender into the air. I’ve also applied it directly onto my neck during a flare. It gave off a very cool feeling and did reduce the urge to scratch (I’ve only tried this once so don’t take my word for it).

My conclusion is that no significant changes were observed. However, I have been able to sleep better since I’ve started using it but that could be because I’m on holiday. We just have to wait and see I suppose.

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?