Friday, 20 February 2015

University of Sheffield Study on Stress

Suffering stress because of your skin?

The university of Sheffield are running a study to see if a self-help program can reduce the effects of stress when suffering with a skin condition.

If you are interested in taking part (I just signed up!) click the link below.

University study on skin and stress.

Hope it helps someone.

Monday, 16 February 2015

Never Ending Flare

I've been flaring now since the end of December and things are actually getting worse rather than better. Every night, the skin on my neck and is soaking wet and my sleep is broken. When I get up, the wetness dries to a thin, flaky crust and I can't turn my neck. It stings like acid has been poured all over me.

I was actually looking at my photos from this time last year and my skin was good back then.

What's really sad is that my kids are off school for half term week and I can't do anything with them or take them anywhere because I'm stuck on the sofa in terrible pain. So on top of everything else, I have kids moaning in my ear about how bored they are and how they'd rather be at school!

I also keep getting phone calls and texts from my friends who can't understand why I've been AWOL for so long and probably think I'm avoiding them.

By next week I will have been flaring for two whole months. Unless a miracle happens and the flare ends.

BTW I'm still on the vitamin D and its having absolutely no impact on my skin whatsoever.

I actually have zero optimism today. It feels like I'm just stuck like this.

Monday, 9 February 2015

Making a Tough Decision

Over a year ago, I was being interviewed by a student for a project about eczema. One of the questions she asked me really got me thinking. She asked if, having gone through the hell of TSW, I would ever use steroid creams on my kids. I can't actually remember my exact answer, although I think it was along the lines that I would consider it if I'd tried everything else first.

Like I've said before, I'm not steroid phobic. I'm quite clear about the sequence of events that got me to this point. I was prescribed steroids for eczema and neither my doctor or I were aware of the risks of long term use. He happily filled prescriptions and I happily smeared myself with stronger and stronger creams for over a decade until they finally stopped working and I ended up in TSW.

I'm also a strong believer that steroids only mask symptoms. They don't get to the root cause of eczema. I think it is a better strategy to look for triggers in environment and even diet before embarking on the steroid route.

OK, after having said that, I was faced with a dilemma recently. It's winter here in the UK and my kids all have seasonal eczema in varying severity. My youngest only has patches on his hands and they aren't bothering him at all. My daughter has quite a lot and my oldest, teenage son has it on his neck where it is very visible. The eczema patch is uncomfortable and is also knocking his self confidence. He was surprised when I suggested a steroid cream.

I explained the dangers and the risks. Heck, he can SEE what steroids are capable of when he looks at me! I also explained that if he were to use steroid cream, it must be the weakest OTC, used twice a day or less and  for less than a week. Then stop. No matter how your skin responds, stop nefore the week is done. I've read of people getting addicted in as little as two weeks, so I'm guessing one week is probably OK.

He's been using 1% hydrocortisone for 2 days now and as predicted, the rash is going away. I might actually ask him to stop tomorrow. I worry that if there is a genetic predisposition to TSA that he might be more likely to get addicted to the creams than the average person. That said, we have been extremely careful and weighed the risks. He is old enough to understand the possible consequences of his decision and was happy to try it out. My daughter refuses to use the cream. She says her eczema will go away by itself. Funnily enough, hers looks a lot better today too.

Use of steroids requires balance, knowledge and an understanding of risk. Personally, I know I have no intention of using them on myself, but I don't feel the need to prevent my family from using them in a sensible and controlled way. I hope we have made the right decision.

Friday, 6 February 2015

Flaring Again

Hi people. I'm now one week into my vitamin D experiment, but so far have no results to report.

I've been taking vitamin d3 capsules, 5000 i.u. daily.

I've had a bad flare this week, but I don't think it has anything to do with the vitamin D. Realistically, I think I have to get a few more weeks supplementation under my belt before I start seeing any benefits. I'm still staying positive!

So I thought I'd share some photos, but they are bit depressing.

I took this face one in the same place as last week, so you can judge if there is any difference.

My neck is all flaky. The skin is wet and then it flakes off and the skin underneath is exposed too early, so the whole cycle repeats. The oozing is bad at night. I cant turn my neck, as it dries tight.

This is the crook of my left arm. It's all red and wet. Ideally, I'd keep it poker-straight and let it air-dry, but who can do that?

This is The back of my leg, which is all flared up again and yes, it hurts to walk.

So now I am over 38 months into TSW. I could do with a break here. Ive been flaring since the end of December. Come on sunshine. Come and heal my broken skin.

Friday, 30 January 2015

My Vitamin D Experiment

I read a really interesting article a few days ago about the UVB levels here in the UK. It was basically saying that in Northern latitudes, UVB levels are too low for our bodies to make vitamin D and we only get adequate levels between March and October. I thought that fact was particularly significant as I tend to heal every summer and then have my annual flare around October time.

This year, I thought I would get away without the anniversary flare as I have been so long off steroids. Sure enough, October came and went, but just as I thought I was out of the woods, late December delivered a huge blow and my skin has reverted to the tight and flaky phase. Its also interesting that my kids have come out in some small nummular patches of eczema, despite the fact that they don't use steroid creams at all. This would seem to be a clear case of a seasonal-type skin condition.

So in my head I made the link between the sun exposure and my skin condition. I learned that in the UK, going out on a sunny winter day will give me UVA radiation, but not significant levels of UVB. It is the UVB that makes vitamin D in the body.

As my blog readers will know, I tried to go to a tanning salon in the past but ironically was turned away because of the condition of my skin. A few months later, my skin healed with the help of the natural sunshine. I have also tried vitamin D supplements on and off, but realise that the supermarket vitamin D is a very low dose and had no effect.

Therefore I have decided to perform and experiment on myself. I am not advising anyone else to try this, as I am not a qualified medical practitioner. Anyway, it may not have any effect, we will have to wait and see. I have purchased some high-potency vitamin D tablets. They are 5000 iu. I have researched vitamin D toxicity and although this is a very high dose, there do not seem to be any adverse effects reported of short term intakes below 10,000 iu.

I will be taking one dose a day for the next month and record my progress. After that time, it will be March in the UK anyway and I will let the natural UVB do its job.
So this is my ugly mug right now. I will post progress photos over the coming weeks to see if there is any effect from the vitamin D.

Friday, 23 January 2015

Sneak Preview of NEA Task Force Findings

Some time ago I mentioned that the National Eczema Association were commissioning a task force to investigate topical steroid addiction. This was in response to the growing number of enquiries that the NEA was getting about TSA and the need to formulate an official response concerning their stance on the subject.

The report has been a long time in coming. In fact, we are not quite there yet, but they have published a preview on Pubmed which looks really positive.

The publication of this article will help sufferers of TSW explain to their doctors and dermatologists that it is indeed a real condition, backed by evidence from experts.

Many thanks to NEA for commissioning this important document. I hope that it will be the starting point for many more research studies on the subject of TSA that will give us more credibility with doctors and dermatologists, many of whom understand very little about this poorly-publicised condition.

This, along with my previous blogpost, proves that the tide is finally turning and awareness about TSW is growing daily.

Thursday, 22 January 2015

TV News Item on Topical Steroid Addiction

TSA made the news in Australia!

Check out the link below to see the video of the news item.

News item on TSW

Thanks to everyone who took part in the video to help raise awareness.