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.

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.

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.

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.

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.

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.




  

 

Anniversary Blogpost: 3 Years Off Steroids-Review of the Year (photos)

Hi everyone. It's that time of year again where I sit back and review the previous year.

I started my steroid cream withdrawal on 21 November 2011, so I am coming up to 3 years off steroid creams. I thought I'd pop on some photos, to give you all an idea of how my skin is right now.

Seeing as it is November and VERY cold, my face is doing surprisingly well. I was expecting a big winter flare but have had nothing so far. You can see that I have nicked the skin on my cheek with my fingernails in my sleep, but I think that is more due to habit than anything else. The skin is looking much more normal in colour than previously and the mild dryness is easily controlled with a thin layer of moisturiser. I'm optimistic that my face will go back to its previously healed state when we get some sunny weather. My face is really the only part still affected by TSW at this stage and the symptoms are VERY mild. I feel I'm close to being healed for good.

 

My hand and arm are normal

This is a side view of my arm and hand to show that the previously rashy area is completely clear.

 

 

 

The rest of my body is the same; just normal skin. My neck is similar to my face, with some small patches of redness. Compared to this time last year, this is fantastic!

 

 

Review of the year:

 

This time last year, November 2013, I was going through a flare period following a good summer of healed skin. The highlight of my month was a lovely get together with local skin friends and TSW bloggers, including the brilliant Miss Kitty. It really cheered me up and set the tone for the year. I met a lovely, inspirational teenager with TSW who helped me feel more positive.

 

In December, I tried the much-touted Moisturiser Withdrawal method. I really hated it and it made me look like a flaky pastry. Still, for the sake of research and experimenting on myself, I carried on the experiment into January, before finally giving it up as a lost cause. Although it was a pretty hyped method at the time, the general consensus seems to be that moisturiser withdrawal is not all that effective for TSW, although some people do prefer this method and say it has helped tremendously. I don't think it suits everyone, but if it does help you, then by all means go for it.

 

In February, my skin was doing OK and I even put the blog on hold while I lived life and enjoyed myself. I didn't blog in March at all, as my skin just got better and better. The Itsan forum hit the 1000 member marker.

 

In April, I briefly returned to the blog to post some great skin photos and to let people know the news about the INSTED initiative where doctors in India were taking TSW seriously.

 

May was another quiet blog month for me, although I was very sad to hear that my teenage friend that I met in November was suffering from steroid-induced cataracts due to her use of creams on her face. She had the operation and is doing OK.

 

In June, I published one of my all-time most popular blogposts as my skin healed completely for the first time since stopping steroids. It was GREAT!!! As a result, July and August were very quiet blogging months as I got outdoors and enjoyed summer.

 

September marked the end of summer, the anniversary of Itsan and the return of the flares! After three months healed, my skin had a crazy flare, but it only lasted a week. Weird.

 

October was a dread month for me, as I always flare in October. But lo and behold-I didn't! My skin stayed clear, which was amazing.

 

Which brings us back round to November and I'm doing well, as you can see from the photos. The winter has taken my skin a small step back, but nothing really to worry about. I truly feel that this is the end of the road now for my TSW.

 

Looking back on the year, I realise how little I have blogged. Some months I didn't blog at all. This is a sign of healing, of moving away to new priorities. I've been homeschooling my autistic son too, so time is at a premium for me now.

 

I want to do a couple of landmark posts about Steroid Phobia and Anniversary Flares. I'd also like to finish up my A-Z of TSW over the coming year, but then I will probably wind down the blog completely. I don't want to be blogging about TSW forever. I slowly want to wean myself back into the real world and away from TSW world.

 

Best wishes to everyone and I hope your year has been as good as mine. I can't get over the amazing ability of the skin to heal if you just leave it alone.