I read a recent study titled:

“A prospective study of atopic dermatitis managed without topical corticosteroids for a 6-month period.”

Here is an excerpt that I found extremely interesting and identified with immediately.

“Topical steroid addiction also known as the red burning skin syndrome may occur after prolonged use of TCS and has been discussed for many years. The skin produces cortisol, and so prolonged application of TCS can suppress this cortisol production in the same way that systemic steroids suppress the production of cortisol in the adrenal gland. Once the production of cortisol in the skin is impaired, irritants and allergens from the environment cause increased inflammation unless there is a consistent supply of TCS, and so the eczema becomes refractory. Prolonged use of TCS has been shown to cause a patchy defect of cortisol staining in the epidermis.”

 

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Month 19 – July

This month has been rough on my sleep schedule. I can’t remember the last time I had this much trouble, probably around the beginning of the year. It’s been especially hard balancing work while not being able to get any sleep until 5AM and then having to get up at 6:30AM. Basically this whole month has revolved around work and catching up on sleep, which makes me feel really unproductive in life. I’m not even working every day either, usually only 2 or 3 days a week but even that much is hard to manage. I also slipped up on my coffee intake earlier in the month which seemed to really mess me up. Or it could have just been a regular TSW flare but coffee and black tea really seems to destroy my skin after a couple of weeks of steady intake. You would think I would have learned my lesson by now but I’m on that caffeine and sugar teet and it’s been harder than I thought it would be to cut it out. Green tea seems to be a much better alternative, both to get my lymphatic fluid flowing and it doesn’t seem to dehydrate me.

I’ve also been trying out this beeswax hand balm  as a moisturizer. It’s made locally to where I live, is all natural and doesn’t have any ingredients in it that I can’t identify. Most commercial moisturizers that I’ve tried end up irritating my skin and delay healing.

UPDATE: I started taking anti-histamines during the day and they have certainly made a big difference in my sleep. I’m sleeping pretty well through the whole night now. Reactine extra strength has been my go to but I don’t really like the idea of long time usage and reliance on it so I’ve switched it up to drinking a couple of pots of chamomile tea at night. I’m hoping it has a similar effect. Right now I feel like I have my eczema under control but I have to be diligent to not succumb to my triggers otherwise the whole thing goes to pot and life becomes unliveable.

Month 18 – June

This last month has been very challenging, and by challenging I mean hellish. My hands have really been falling apart over the last few months, oozing a lot and not seeming to get any better. In fact, they may be the worst they’ve ever been. The backs of my knees and ankles have also started showing signs of TSW as they have been itching a lot lately and I’m starting to experience more oozing from them whereas before I never really had any issues with them.

But since I’m experiencing all this oozing I’ve decided to try moisturizer withdrawal again. I’ve tried it several times in the best to varying degrees of success. It seems to help heal up my trouble spots initially but after awhile it becomes difficult to maintain having my skin so dry and it’s pretty damn painful having the creases of my hands and knuckles constantly cracked open. It’s like having deep paper cuts all over my hands. So the only thing I’ve been using has been sudocream. I don’t even know if this is the wisest course of action but I’m just really tired of not getting any results from moisturizing every day; it’s expensive and seems to irritate my skin after prolonged use.

My hands seem to go in cycles too. They will start out really dry and cracked and painful but if I can leave the skin on they slowly heal underneath. The skin usually sheds off in the tub or just from me picking and scratching it off, then my hands usually look and feel normal for a few days before the cycle starts again.

It feels never ending and if this is just something I have to deal with in life forever I don’t know how I’m going to manage. Money is getting tight and the only job I’m able to work that pays me a living wage is in landscaping but even that I can only tolerate doing 2-3 days a week. The mix of dust, sweat and constant movement is not ideal.

“Pretty Sensible”

I had an appointment today with a rheumatologist to see whether or not I possible had Lupus after some of my blood work tested positive with an ANA antibody that is linked with Lupus, in addition to my swollen lymph nodes, sore joints and a couple of other symptoms that are linked with Lupus. Luckily, it was a false positive, and the doctor ruled out Lupus and arthritis. He wants to rule out lymphoma so I need to schedule a CT scan but I’m quite confident that I don’t have it and that all these symptoms are TSW related.

At the end of our appointment I told him about my TCS usage and how all the symptoms I’ve been experiencing are related to TCS abuse and started shortly after I quit using TCS. He said that that was a “pretty sensible” conclusion and even used the word withdrawal (I now tend to avoid saying Topical Steroid Withdrawal during meetings with doctors because I’ve found that it tends to be a trigger for them to stop listening to me.) I can’t tell you how much those two little words meant to me. Almost every doctor I’ve seen has either clammed up when I mention TSW or immediately went on the defensive and try to diagnose me with something else. As I’ve said before, the only medical professional that has diagnosed me with TSW was a naturopath and they are pretty much at the bottom of the totem pole when it comes to mainstream medical acceptance. 

Month 17 – May

This month was pretty hectic. My girlfriend and I moved into a new place so I’ve been very busy packing and unpacking. It was kind of tough because I would get kind of dusty from packing and go into itch fits, so the packing dragged over the last couple of months. Overall though my energy levels are pretty high, my sleep is fairly normal and I think my skin has been getting better. Still dealing with oozing on my face, neck and hands. My hands have been pretty up and down too; they seem to go through these cycles where the skin becomes very thin and then scabs over and is good for a few days before thinning again. There’s also some really painful cracks that form in the creases of my hands and knuckles that make life kind of dickish. I’m also going to see a rheumatologist tomorrow to see whether or not I have Lupus. I’m still not convinced that it’s Lupus but if we can rule that out then we’re another step in the right direction. Or maybe I just have Lupus, in which case, I should probably get a handle on that before my immune system attacks and kills me.

But I was looking up possible side effects of Betaderm, which is the topical steroid that I used and abused the most, and I have 24 out of 40 potential symptoms so I still think there’s a fairly high likelihood that I am healing from TSW.

Here’s the full list:

Betaderm Side Effects
increased skin sensitivity x
lack of healing of skin condition x
ongoing burning, itching and irritation of skin x
itchy rash with small, red, raised bumps x
skin discolouration x
skin infection x
“spider veins” or blood vessels visible through the skin
thinning of skin with easy bruising
acne or oily skin
backache
blurring or loss of vision (occurs gradually if medication has been used near the eye) x
changes in skin colour x
depression x
eye pain (if medication has been used near the eye)
filling or rounding out of the face
increased blood pressure  ?
increased hair growth, especially on the face and body x
increased loss of hair, especially on the scalp x
irregular heartbeat
irregular menstrual periods  n/a
irritability x
loss of appetite x
muscle cramps, pain, or weakness x
nausea x
pus in the hair follicles x
rapid weight gain or loss x
reddish purple lines on arms, face, legs, trunk, or groin
redness and scaling around the mouth
softening of the skin x
stomach bloating, burning, cramping, or pain
swelling of feet or lower legs
tearing of the skin x
thinning of skin with easy bruising x
unusual bruising
unusual decrease in sexual desire or ability (in men) x
unusual tiredness or weakness x
vomiting
weakness of the arms, legs, or trunk (severe)
white spots x
worsening of infections x

I went to my GP yesterday after having a chest Xray and an ultrasound taken of my lymph nodes (I have swollen lymph nodes in my groin, armpits and neck). I also had some blood work done that revealed that I was positive for the ANA antibody. This along with some photosensitivity and joint stiffness I’ve been experiencing made my doctor concerned that I could have Lupus. He is getting me an appointment with a rheumatologist and I’m going to get a biopsy done on my lymph nodes to make sure there’s nothing malignant. I asked him about TSW and told him that a lot of these symptoms also correlate with it but he was doubtful that TCS would cause my lymph nodes to swell to this size (the biggest one was 1.8 cm). I’m a little worried about a Lupus diagnosis but I am also still pretty confidant that I’m going through TSW.

Month 16 – April

This month was pretty tough. I worked landscaping for a lot of it 3 or 4 days a week but even that amount was really challenging. Dealing with a lot of allergens and the sun made me claw at my face, neck and hands a lot. Really delays the healing. I thought getting a lot of sun would be good for my skin but now I’m not so sure. When I was doing UV treatments (which I don’t really have the time for anymore and since the sun is out now, I don’t want to overdo it) I was going in for 2 minutes at a time. Being in the sun for 5-7 hours a day is a lot harder to deal with and my skin was pretty reactive to it.

I’ve been putting a lot of Aztec healing clay on my hands though and I think that it has been helping. I usually just let it dry on my hands or face now to soak up any oozing spots. It also kind of acts like a protective scab and keeps from scratching at those parts (usually). I think I’ve made a lot of progress especially on my right hand, which has been a complete mess for months now.

I also had some blood tests done that revealed that I have some genetic markers for Lupus. My doctor said that it could be a false positive but I’ll need to see a rheumatologist to find out for sure.