Tuesday, 27 January 2015

NEA TSW Task Force Full Document

Many thanks to eagle-eyed blog reader Sam, who posted the link to the full article in the comments section of my previous post. Much appreciated.

Please people, get your printers ready because you should definitely print this document out to share with your doctors.

Also, any TSW bloggers out there, please put the link on your blogs and share, share, share.

NEA TSW Task Force Full Document

I'm so happy with the way the document turned out and I hope that it will help medical professionals understand TSW better. Thjanks you NEA for the time and effort taken in compiling the information.

The Itsan forum also has a dedicated thread about TSW articles and documents and is a useful resource for anyone wishing to approach a doctor or dermatologist to explain TSW.

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.

Sunday, 11 January 2015

Bad Flare at Nearly 38 Months (photo)

I could write a long post about this, but I will let the photo do the talking.

Suffice to say that, earlier this week I started flaring really badly. I don't know why.

To say that it is a shock after so many months of good skin is an understatement.

I have reverted from having a normal life to being a sofa-bound shut-in. I was supposed to take my son to a basketball match today, but dad has to take him instead. I'm really upset because I was looking forward to it for a long time.

Sleep is awful. Night time is a hot, sticky mess and I often wake up with a wet face and hair matted behind my ears.

On the plus side, the flare is confined to may face and neck. the rest of me is OK.

I know the flare will pass, so I just have to ride it out. I didn't really want to post this, but I'd rather be honest than sugar-coat the pill.

You have to wonder at 38 months, just how long this process is going to take. Sure, I know I will heal again in summer, but will I ever get through a whole winter without a setback like this?

Love and sympathy to all those out there suffering.

Tuesday, 6 January 2015

Rant of the Day

Please feel free to cut and paste the comments below and print them off onto a piece of A4 to hand out to well-meaning acquaintances:

HI (insert name)

YES, I KNOW MY SKIN LOOKS BAD TODAY.

YES, I HAVE TRIED ALOE VERA/SUNBEDS/VASELINE/E45/VITAMIN SUPPLEMENTS/EVENING PRIMROSE/DIET....(insert other therapies here. Could be a long list!)

I AM GLAD TO HEAR THAT YOUR FRIEND/RELATIVE CURED THEIR ECZEMA BY USING "X" THERAPY, BUT MY ECZEMA IS A SPECIFIC TYPE CAUSED BY DAMAGE FROM TOPICAL STEROID CREAMS AND IT CAN TAKE MANY YEARS TO IMPROVE.

I AM GIVING YOU THIS PRINTOUT BECAUSE I HAVE HAD THIS CONVERSATION 20 TIMES ALREADY THIS WEEK AND ITS BEGINNING TO FEEL A BIT LIKE GROUNDHOG DAY, SO I THOUGHT WOULD SAVE MY TIME AND ENERGY THIS TIME AROUND.

BY THE WAY, EVERY TIME SOMEONE LIKE YOU MENTIONS MY SKIN IN CONVERSATION, I FEEL UGLY AND DISGUSTING AND IT MAKES ME FEEL LIKE THE ONLY THING ANYONE NOTICES ABOUT ME IS THE WAY I LOOK, RATHER THAT WHO I AM AS A PERSON. I KNOW YOU MEAN WELL, BUT IF EVERY CONVERSATION YOU EVER HAD STARTED WITH "YOUR SKIN LOOKS BAD TODAY", YOU WOULD WANT TO AVOID SOCIAL CONTACT TOO.

THANK YOU FOR YOU CONSIDERATION.


Thursday, 11 December 2014

Photos and Stories of those HEALED from TSW!!!

My little friend baby Isaiah has a thing or two to share about TSW healing.

If you need cheering up, or are doubting the TSW process and wondering if it will ever end, you need to read the latest post on his mum's blog.

Click the link to see the heartwarming photos and stories of those healed from TSW.

Clear, beautiful skin and no more dependence on steroids: the very definition of true healing and true freedom!

...plus a little bird tells me that there are even more photos to come! She's doing part two soon. If anyone has any before and after photos they'd like to share, please get in touch with Isaiah's mum via her blog.

Sunday, 23 November 2014

Steroid Phobia

At this time of year, I usually write a couple of landmark anniversary blogposts that take a deeper look at some of the big issues surrounding topical steroid withdrawal. If you haven't read my previous landmark posts, the links are below:

Reflections: 12 Months Off Steroid Creams
12 Months Off Steroids: Skin Changes
12 Months Off Steroids: How to Cope
Review of the Year
Topical Steroid Withdrawal and Oozing Skin

So I've been wracking my brain thinking about what to write for this year's post and then it came to me when I was looking at the Itchy Little World blogpost about TSW. In the comments section, one of the readers stated:


Paradoxically another psychiatric term is used in this context: “steroid phobia”- a phobia being an irrational fear associated with avoidance behaviour. It is easy to see how hearing about “steroid addiction” can lead to “steroid phobia”.

Steroid PHOBIA? Sounds serious! I'm lucky in that I don't have any real phobias, but I know how phobias can affect people. I have a friend who has a phobia of spiders. She literally cannot look at a picture of a spider without going into full panic mode. A toy spider would make her feel very sick indeed. Phobias are very serious fears.

But steroid phobia? It sounds odd. I've certainly never broken out in a cold sweat thinking about tubes of steroids and I'm certain I could pick one up without any concern. I daily use a steroid inhaler to treat my asthma and it doesn't bring on a panic attack. I'm not sure that anyone could actually be scared of steroids, could they?

The source of this weird term seems to be an article published by the National Eczema Association back in 2003. It says:


Unfortunately, the risks of side effects from topical steroids have been exaggerated over the years, and this means that some patients and families are understandably worried about using steroids – even when they are necessary and appropriate. As dermatologists, we know that this fear of using
steroids (steroid phobia) is a very common cause for patients to under-treat their eczema.

So what they are saying is that when patients are cautious about using steroids on their kids, they have "steroid phobia". Really? It seems a bit of a strong term, to call it a PHOBIA. A bit of an exaggeration, really.

Having a healthy concern about something, isn't the same as a phobia. For example, I imagine that most of us would have a healthy respect for the sea; we might have a paddle or a swim, but we would also be aware of the dangers of swimming out too far or in strong currents. This is a sensible fear, certainly not a phobia and nobody would describe it as such. But when a patient shows reasonable concern or questions a medical treatment, they are labelled as "phobic". It seems extreme.

Let's get real. A balanced approach is needed. This blog is about my personal experience and anyone reading it will see the damage that long-term overuse of steroids has done to my skin. I'm talking 15 years of daily steroid use. I used Fucibet, a cream that should only be used for 2 weeks, daily on my face for a year. I abused the system. I ignored the advice labels. I suffered.

But do I fear steroids after my experience? DO I think they are the source of all evil?

No. Absolutely No.

Steroids have a place in medicine. Steroids can even save lives. Let's not demonize a medicine because someone had a bad experience due to misuse.

Its like any medicine. Used wrongly, any medicine has the potential to be dangerous. It doesn't mean all medicine is evil.

HOWEVER, there is certainly a credible argument that steroid creams are over prescribed and not regulated properly, especially in the case of atopic eczema. I had no problem refilling my prescriptions year after year and most people using steroid creams would admit to having the same experience. How many of us were warned about the side-effects, or told to only use the creams for a short time? How many of us just filled in prescription repeats for years and years?

Its also true that steroids are prescribed much too easily. I've mentioned before an experience when my young daughter had an infection from an ear piercing and the doctor prescribed a very potent steroid to treat it. I didn't use the steroid and she recovered fine without it. SO many times people are prescribed steroid creams without looking into the root cause of why they are flaring and trying to remove triggers first.

It is the sensible course of action to exercise a little caution rather that accepting everything that we are told. We shouldn't be labelled "phobic" for this. It's an unfair, even bullying name-calling exercise, designed to demean and undermine a person just because they are being cautious about a potentially dangerous medication.

So I call for balance on both sides: Doctors, please don't label us "steroid phobic" just because we are cautious about steroid creams. Treat us with respect and advise us on safe usage and possible alternatives. Likewise patients, don't be so quick to label steroid medication as "evil". It has a place in medicine and could save your life one day.

As new drugs are constantly being developed, this argument may be irrelevant in the very near future. I certainly hope so. Meanwhile, name calling and mud slinging on both sides of the fence should stop.

As for me? I certainly don't have steroid phobia, but I do realise, from experience that they can be easily misused and therefore I advise caution when using them and would certainly not recommend using them for longer than stated on the label (usually two weeks). Even then, there have been reports on the Itsan forum of individuals who got addicted after two weeks of using very potent creams.

Soon the NEA will publish their findings about TSW, which will acknowledge that it is a REAL medical condition. Hopefully this will help the medical profession to become more circumspect when prescribing these medications.

If you would like to read more about the subject of steroid phobia, I recommend Dr Fukayas writings on the subject. Again, he is not anti-steroid per se, but does advise caution with steroid use as he has treated many patients with steroid addicted skin. If you don't read anything else on the subject, please read this extract from Dr Fukaya's book that roundly condemns (in a very humorous way) those who use the words "steroid phobia" to patronise their patients.

Common sense and balance should be the order of the day. Let's call a truce on this war of words.