12 Months Off Steroids: Skin Changes

This is the second of my "reflections" posts marking a year off steroid creams.

Today I want to summarize how my skin has been over the year. Basically, this is the whole blog condensed into one post!

When I first stopped steroid creams, I had a couple of days grace before the wave hit me. My skin got a little red and flaky but nothing too bad.  I had been reading the google forum that later became the Itsam forum and I read many horror stories of people suffering with TSW. Was it really going to be as bad as they said? I mentally tried to prepare myself for the worst and told friends and family about TSW and the fact that I may be incapacitated for a while.

After a week or so, the symptoms of TSW started to kick in. My skin, starting with my face, started to turn red and burn, and yellow ooze started to come out of the skin, which was puffy and inflamed.

Soon I could not function normally. I was restricted to the setee, which became my new bed. I could not sleep in bed because I was oozing so badly. My husband took the kids to school and helped with the housework. I spent most of the day on the setee sleeping. My adrenals were damaged from the overuse of cortisone, which had fooled my body into thinking it was producing enough natural cortisone. When the creams stopped, my adrenals had to compensate, which left me tired and with erratic sleep patterns. I would wake regularly and lie awake for hours. My body wanted to sleep at about 7:00 a.m., which was when I needed to get up and get the kids fed and dressed.

I soon developed strange coping habits. A pillowcase wrapped around the neck helped with the ooze and socks on the hands stopped me scratching. I would drink plenty of chamomile tea which kept me relaxed and calm.

I would flare for weeks but get little breaks in between. The breaks helped me cope and prepare myself for the next flare. My body was in full rash and very painful. It made me cry that I could not hug my kids. I would just smile and hold their hands. My little boy asked me if I was going to die.

Most days I was a mental wreck.  I constantly doubted myself and wondered whether I was doing the right thing. I had to withdraw from many of the activities that were part of my weekly routine. I saw less of my friends and felt like a recluse. Many of my friends told me to give up and go back to the steroid creams for some relief and that it wasn't worth putting myself through this.

I started my blog, which helped me. The high point was receiving messages from others saying that the blog had helped them. If I helped one person, then I am happy.

The next big problem I had was when my legs started to swell. Walking was agony, but I still had to fetch the kids from school every day. The backs of my knees became cracked and rigid. I raised my legs whenever I got the opportunity. Wet wounds started to form on my calves. The wounds would not heal.

Here I would like to point out some of the ways that TSW differed from eczema:

My legs never swelled when I had eczema.

My skin did not burn when I had eczema.

TSW can cause a red rash that stops at the wrist, creating a "sleeve". Eczema does not do this.

TSW causes a weird metallic-smelling ooze to come out of the skin.

TSW creates wet wounds that are very slow to heal.

TSW creates a whole body rash. Eczema should not affect the whole body.

I am quite confident that I could tell the diffeence between a person with eczema and a person with Topical Steroid Addiction.

Anyway...to continue....

The breaks started to get longer and the flares seemed to get better. Then, in June,  nearly 7 months into withdrawals, I moved house. My skin initially flared with the stress of moving, but within a week or two, I experienced a big shift for the better and my skin really improved drastically. My face looked almost normal and friends would comment how well I looked. I got back into my daily routine and got back to socialising again. Life got back to normal from June to October.

By October, most of my problems seemed to be over. I wasn't posting much on the blog, because there was very little to report and I thought I was prety much cured. The wet wounds on my legs that I'd had since January finally disappeared and the skin on my torso was normal. I could even tolerate bubble baths again!

Unfortunately, the second "wave" hit me like a bomb.

I was feeling so confident about my "new face", that I stearted applying cosmetics again. Big mistake. After one night out, I returned home to notice that the whole side of my face was wet. This led to a massive flare of the left side of my face. My skin burned, turned red, oozed and flaked. It would cycle, but as soon as the dry skin had flaked off, the skin underneath would be wet and juicy again. My ears oozed fluid and sleeping became difficult again. I returned to using antihistamines and having socks on my hands at night. It felt like I was back to square one, even though my skin was normal from the neck down.

That brings me to today, mid November. I have now been flaring for 6 weeks, but things seem to be calming. The last lot of flaking does not have red skin underneath. However, the skin still feels puffy and wet and my eyelids have deep cracks in them that ooze fluid. I am sure that my skin is reacting to allergens in the atmosphere.

I am hoping that my facial skin will calm down completely within the next week or so. I am fed up of being stuck inside.

As for complete healing? Who knows? When I started this, I suppose I optimistically thought that I would be done in 6 months. Based on my healing pattern so far, I estimate that by Summer next year, I will be healed. My skin likes the sunshine! Many experts estimate 3 years for complete healing. I am happy to wait and see what happens, but I will not return to steroids.

Now for the big question? Would I tell other people to quit steroid creams?

Actually, no, I would not. I feel it is wrong to force my decision on others, especially knowing what is involved. However, if someone did decided to quit, I would support them 100%.

The decision to quit steroid creams is a PERSONAL one. We cannot force others to make that choice. If someone wants to quit steroid creams then they should arm themselves with as much information as they can before quitting.

HOWEVER>>>>>

People who use potent steroid creams long-term also need to be aware of the potential consequences if they continue blissfully down the "steroid road". If they know all the facts about steroid addiction and then still choose to use them they may be only prolonging the inevitable. They may eventually require stronger and stronger creams and be completely reliant on them, although this does not necessarily happen in all cases.

All we can do is inform others about steroid addiction. What they choose to do with that information is up to them, but once they know the facts, they are very hard to ignore.

The best thing is not to get addicted to steroids in the first place. It is a lot easier to cope with a little red patch of eczema on the leg that a whole body of TSW. If you have eczema, search for the triggers. Experiement with moisturisers. Stop using detergents.. Don't assume that steroid creams are the answer, but if you do use them, use them RESPONSIBLY and never for a prolonged period.

This "quick fix" can demand a lot back in the long term. I can testify to that.