Weird Patterns and Eczema

Have any of you ever noticed how your eczema would suddenly improve or worsen in certain occasions? Well over the years I’ve noticed a few things about my eczema. It has always fascinated me and I wondered if this was true for others with eczema.

1) It seems to improve during menstruation

2) Sometimes I’m so tired I fall asleep without showering or moisturizing and I wake up with non-inflamed or red but very dry skin

3) Sleeping a lot seems to help with eczema

4) When I get sick with the flu or a cold my eczema magically improves

5) I’m asian and I suffer from low alcohol tolerance. What I notice is that if I drink a lot of alcohol I have really bad eczema that night but really good skin the next morning.

6) Probiotics seem to help occasionally

7) It gets worse with stress and lack of sleep! Sadly impossible to avoid as a Medical Student 😦

Let me know about your strange experience with eczema!!

7 Months – Stagnant

For these past few months my eczema has been pretty much the same. I posted earlier that the eczema on my shoulders that I got when I stopped using topical steroids finally went away. That is still the case except that the skin there has become very dry, wrinkly and flaky. I’m still fighting eczema on my neck, elbows, behind the knees, face, and the eczema that has spread to my lower back, arms and hands. It quite scary to go from having eczema in a few areas to having almost full body eczema when you stop topical steroids. Sometimes I wonder if it will ever go away but I guess 7 months in is too early to tell. Bleach baths, vaseline and lots of sleep seem to help a lot.

Day 118 Hope

I’m going to kill myself for not keeping a better track because I’m sure some of you would really like to know when I started seeing improvements. It has been at least 2 weeks since I have not had a major flare-up equal to the ones I’ve had in the past. I did have a short itch attack once or twice. In addition, my eczema has not prevented me from sleeping for the longest time. The improvements are to a point where I would not have considered using steroids in the past at all because its only mildly red. In short, it feels like the severity and time between flares have decreased. The only negative thing is that I’m still quite itchy occasionally although not as flaky. In addition, the eczema that was induce on my shoulders, stomach, and chest have not gone away.

I would love to say that topical steroid withdrawal helped but it could also be the changes in weather from winter to spring (cheers!). Its too early to say but I will keep everyone updated!

Day 41-64

I feel very much like I traded one hell for another. In place of a constantly red and inflamed neck (prior to TSW) I now deal with alternating periods in which my skin is calm and smooth followed by periods of an intensely raw and itchy sensation. During the bad periods, the eczema is localized in the entire region above my chest and along my entire arm. My eyelids are dry and itchy, my cheeks and forehead display a reddish blush, and the skin around my shoulders peel like grated chocolate curls. I call this a new hell because while my neck is noticeably less red than it has been in the past, the fact that topical steroid withdrawal (TSW) induced eczema on my shoulders make it physically painful to move, wear backpacks or bras due to the rawness and sensitivity. Most fabrics now irritate my skin making it impossible to wear many of my clothes. When the eczema was just on my neck, I didn’t have to worry about these things because it was literally bathed in air. The worse part of TSW is the pain. I can’t describe it perfectly but its almost an intense itchy sensation. You want to scratch it but you know that if you do, the skin becomes more sensitive. When I fight the urge to scratch, it feels like ants are crawling up my skin. I’m not sure if I should call this burning. It’s a lot more intense and painful than what I dealt with prior to TSW. This burning sensation is constant, so for the whole day I feel pretty much like I’m in pain. Sometimes I get so sick of it that I wish I was never born. Despite this, when the good period comes its absolutely rewarding! For anyone deciding TSW, just please make sure that you prepare yourself mentally and emotionally because it literally is like a roller coaster.

Day41 Red Skin Syndrome Strikes Again

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.

Day38to40 Skin Continues to Improve

Strangely, the redness on my hands and wrists have disappeared during these last 5 days. I did feel that today, it seems to be on the verge of coming back. I find it so amazing that my neck has calmed down so much. If improvements continue, then no doubt, red skin syndrome was the culprit all along.

 

Day36to37 Redness Calms Down

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

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.

Day 22

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.

Day22

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

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

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?