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.

 

 

 

 

 



The Blog Just Hit 500,000 Pageviews

I just logged on and noticed the pageview marker had passed the half-million.

Many thanks to everyone who has contributed to the total.

Next week marks 3 years off steroids, so I will try and write something special to commemorate it.

I hope that readers have found it a useful resource for information on red skin syndrome and topical steroid withdrawal.

...onwards and upwards toward the golden million pageview marker!

ITSAN Forum News

The ITSAN forum just hit 2000 members! How amazing is that? The forum, in its current state has only been around for just over a year, so the growth has been incredible.

Of course, this is just the tip of the iceberg, as many going through TSW are also members of Facebook groups and other social media groups. It's great that people are discussing TSW! Taking it seriously and raising awareness.

Thanks to everyone to takes part in the forum and makes it such a vibrant TSW community. We are here to support one another and I am inspired by some of the well thought out comments I read.