Day 134: Calling All Doctors!

I'm feeling great today. My skin is nice and calm and my face looks better than it has done in a long time.

There are a lot of people like me going through the effects of topical steroid withdrawal and we are all at various stages in the journey. Some have healed completely, others are in the very early withdrawal stages of the oozing and burning red skin. It is highly appropriate then, that this addiction withdrawal is called Red Skin Syndrome. It amazes me that doctors can deny that Red Skin Syndrome exists, when thousands of people who have come off topical steroid creams have had exactly the same symptom pattern: The red, burning skin, the classic red arm and white palm pattern, as well as the swelling and the oozing. The symptoms of Red Skin Syndrome are so unique that surely nobody could diagnose this as eczema. it is nothing like eczema. This is a side effect of addiction, make no mistake.

 Ask anyone who has used topical steroids for a length of time what happens when they try to stop. Their skin goes into a rebound flare and starts to burn. It burns until they put more steroid cream on it. Doctors already recognise conditions like perioral dermatitis and steroid rosacea. These have exactly the same cause as Red Skin Syndrome, a reaction to overuse of steroid creams, which spirals out of control, leaving the user completely dependent on the creams to function.

ITSAN calls on all doctors who understand this condition and are willing to treat it to go on a special register, so that people suffering from the effects of steroid addiction, or Red Skin Syndrome know where to go for help. If you are a doctor, please register your name with ITSAN.org to go on this list and provide much needed help and advice to those going through painful steroid withdrawals.



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Day 133 Free Salcura Samples

Feeling OK today. Skin pretty calm and I have been able to go out with the kids today. Just hope my skin behaves for the 2 week Easter Holidays!

I was fortunate enough to get some free samples from the Salcura website. This offer is open to everyone and they send you 3 sachets of zeoderm cream and 2 sprays. I found that my skin tolerated the gentle spray really well and it suited my daughter, who has a really sore patch of eczema on her neck, which will not tolerate any sort of cream.

I have been following a lot of the interesting stories on the Google group. Some of them are truly heartbreaking, especially parent with kids who have been using these creams since they were babies and are now going through the painful process of withdrawal. More and more of the forum members are interested in starting their own blogs to tell their stories.

One forum member who has done this is the lovely Spela, from Slovenia. She has started a blog in her own language, as there is very little information on the internet in her language about Red Skin Syndrome. I am adding her blog to my list of links on the right hand side. You can use auto translate to read it in English.

I want to feature some more stories from the members of the forum, and hopefully, they will respond to my request for some guest bloggers over the coming weeks.

Day 131 My Daily TSW Cycle

My skin seems to have gone into a daily cycle of flare and calm. This is how it usually goes:

Morning: I wake up and my skin is pretty dry. There is very little redness and, usually a lot of flaking around my mouth and neck. usually have to moisturise the backs of my legs and my elbow flexures so that I can move properly. My eyes are sometimes a bit gooey, but this passes quickly. Once I have had a mad dash getting kids ready for school, I try and rest up as much as possible.

Early Afternoon: Lunchtime is when I feel my best. The initial tigtness has gone and my skin feels OK. This is when I can get jobs done, as my energy levels are peaking.

Late Afternoon: Once I go to fetch the kids, I am on my feet for most of the afternoon, causing slight swelling in my legs. By the time I have got the dinner on the table, my skin is starting to go redder and my legs ooze a little.

Evening. By the evening, around 8:00 p.m. my skin is at its worst. I start shivering and juddering and my body gives off a lot of heat. I have to sit down with my legs up, as my leg swells slightly.

Night: By the time I go to bed, my skin is usually in a  mild flare and pinky-red all over. My neck is also a little swollen. I put on a light layer of moisture before bed, and put dressings on my weepy patches of my legs. In the night my neck oozes quite a lot of fluid. I have to use towels, pillowcases or scarves around my neck. I often wake up at 2 or 3 in the morning, which I think is due to adrenal fatigue.

By the morning, my skin is calm again...

Day 130 (photos)

Feeling Ok today, but trying to stay out of the bright sun. I thought I would post some more progress pictures.

So as you can see, my face is not too bad. Slightly pink but not too bad! My neck is slightly raw but has a bit more movement than yesterday. I wouldn't be embarrassed to go out in public with my skin like this. I am using a bit of hemp cream to combat the flakiness but I am trying to use the smallest amount I can get away with, because I don't want to cause a skin reaction. The facial skin tends to go through a flushing and flaking cycle.

This is an updated picture of my calf area, where I have had a bad leg wound for a couple of months (see my previous photo entries). These weepy leg wounds are really hard to get rid of, but I have been following the moist healing method and using vaseline and a dressing on the wound every day. The picture shows that the skin is returning to normal on my leg and there is no "wound" any more, although I have another similar patch on my right leg, which is also responding well to the moist healing.

All in all the skin is pretty good and improving daily. My neck is still oozing at night, so last night I used a silk scarf to combat the wetness. My sleep pattern is slightly disrupted due to the oozing skin. I am trying to exercise more and eat less to combat the weight gain I have experienced due to sitting on the sofa a lot during my withdrawal! Weighed myself this morning and I have lost a pound, so it is all good!

I contacted the British Skin Foundation about Red Skin Syndrome and my experiences with the condition. I am really interested to hear what they have to say on the issue.

Day 129 Exercise and TSW

I'm feeling a bit fragile today. The skin on my face burned slightly when I woke up. This could indicate a flare. It is really hard to tell. All of my skin feels a little sore and raw. I'm flaking a lot around my neck and limb flexures.

I weighed myself yesterday for the first time in ages and was horrified to see that I had put on 5lb since quitting steroid creams at the end of November, especially as most people lose weight during steroid withdrawal. I think it is because I have had to slow down my daily activities considerably and I have also been ravenously hungry during bad skin flares, which is a bad combination!

I tried to do a workout on the Wii yesterday to try and combat the weight gain. it was a bit of a disater. First of all, I didn't realise how stiff my neck was until I tried exercising. The skin was so tight on my neck that I had to hold it rigid, which was really uncomfortable. My leg and elbow flexures are also tight and sore, so dancing around the living room was going to hurt! I gave up after 5 minutes. I am monitoring what I eat and trying to take more gentle exercise to stay active. I used to take the kids to school in the morning, which was a good, 30 minute walk, but my husband does it now, as my skin is always worst first thing in the morning, but losing this morning workout has obviously impacted on my weight.

Exercise is hard when you can't move your neck or limbs!

Day 128 Seeking Sunshine

Slept a lot better last night, although my neck was still weeping fluid.

The wet areas all dried powdery this morning, so this means I am not in a flare, thank goodness. I rested up most of yesterday and took a long walk at sunset to get a little sun on my skin without burning.

My skin is OK, not great, but not in a flare either. It feels a little sore and irritated, but tolerable. The worst areas are my neck and behind my ears. My scalp is also flaky and itchy. I am confident that things will get better. Some members of the Google group have now reached a level of considerable improvement and are posting their success stories, which is of great encouragement to me.

Day 127 Sticky Skin

Just when I though everything was going so well.....

I had a really oozy night last night and got hardly any sleep. My neck, bra-line and chest were leaching sticky fluid and it was also coming out of my chin and jawline, as well as from behind my ears. I kept turning over in the bed to try and get comfy, but it was impossible, as my skin felt so damp. I also had problems with my eye, which was swollen up as if I'd had an allergy.

It has all dried up this morning as soon as the air got to it, but my hair is all matted up behind my ears and needs a good wash. I can detect a faint metallic smell coming from the oozy areas. I don't know how apparent it is to anyone else or whether only I can smell it.

I'm not sure whether this is flare number 7 starting, or just a minor blip. I will find out over the course of the next few days. I just know that rather than waking up all dry and flaky, my skin was wet and sticky, so it looks like a bad sign. I am going to rest up completely today in the hope that it won't develop into a full blown flare and set me back again after I was doing so well.