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.