Are you sitting comfortably? Then I’ll begin….

No journey can be explained without you understanding where its come from. So all journeys need a starting point.

I was 11 and had just started senior school. I always had dry lips so started using vaseline. I then developed a rash around my lips which was burning, stinging so so bad. It also scabbed and felt very rough and dry.

I remember flaring at school one day during science and pleading with the teacher to let me go to the toilets and put cool water on to cool it down and he said “no”! In one word he was a TWAT.

Then the bullying started “IP IP scabby lip!” They would shout and laugh at me. But you know what? I never missed one day at school because of that. Never!

I was under the care of a lovely doctor who was prescribing me all the different combination steroid creams you could imagine that just weren’t working or making me itch more. He also diagnosed me with excema. Turns out those creams he was prescribing me had petroleum in, same ingredient as vaseline… I’ll talk about this later ….

I battled through the whole of senior school with this and different tests. Finally had patch tests done which identified I was allergic to petroleum, petrolatum and any other form of liquid paraffin (hard, soft, etc) oh and they also picked out Crest toothpaste. I remember getting the patch test results at the royal infirmary Sunderland. I even remember the ward and what I was wearing. Weird what we remember but this was so important for me. My GCSE exams were coming up too and I needed this to be gone.

After my results were in they prescribed me a steroid cream canesthan hydrocortisone. 1%, which I now know is a category 7 cream. One of the lowest percentages you can find. Within 2 weeks the scabs had gone and I felt great. I had a follow up with my GP and I remember him shaking his head saying “that is so frustrating. I was so close”

Well I’ll tell you what’s frustrating eh…. that the rash was probably caused by an allergic reaction to vaseline and maybe could of been cured without the steroid cream.

I remember going into school for my first lot of GCSE exams thinking eeee look at me… for the first time in 5 year I didn’t have that awful rash around my lips.. I felt confident.

I cant actually remember using the cream after that if I’m honest until later on in life. I always had dry lips and would use lypsyl but stayed clear of vaseline.

The Break up

My excema flared approx 10 years ago when me and my ex fiance split up. I’ll not go into detail but it was very stressful. I remember being at my friends house from school and she said “is it back?!” Meaning my lips. Unfortunately yeah for me. I was devastated.

This resulted in another round of trips to the doctors with creams and oral steroids. This time trimovate and prednisolone. It was great whilst on the steroids as everything cleared up. Then I remember the third day I was off the oral steroids it came back. It was at this point I started using the steroid cream every day. My motto was yeah it thins the skin but I’ll be old and wrinkly anyways so why not! Oh my God. How wrong was I.

I believe now that this rash was candida bacteria and potentially excema caused my the massive stress going on in my life..then add to the mix my boss decided to bully me for two years after that. It was a dark time, which did nothing for skin.

I started reacting to foods which I’d never done in the past. I ate whole wheat pasta and my whole head swelled up. At this point my lips swelled up, peeled and then all the glands in my head and neck followed. I was put on a course of oral steroids for 4 weeks as it was such a bad reaction.

From that moment on I used the steroid creams until present day and what is even more shocking is that the doctor would keep prescribing these steroid creams without a review or anything. The cause could of been investigated with a little bit of care from the doc.

Looking back this makes me sad and angry.

I’m sat here in bed with my own cream I’ve mixed up as my poor lips cant stand anything else as they’re so red and burning. I’ve whisked up zinc oxide powder with castor oil and chucked some calendular in too and thought this is shit, its bank holiday weekend and I feel I look awful. The skin around my lips is bright red, tingling and burning and itching and the only relief I get at night time is from this cream, which by the way looks like nappy cream and I look like a clown.. you get my drift ha ha.

So instead of being angry I’ve got some techy background and magical online powers so thought I would educate anyone who reads this blog about the harm steroid creams can do.

I mean a blog is in the public domain so why the hell not..

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton

What is topical steroid withdrawal?

Please note that all of the information on this page is taken from the ITSAN website. ITSAN is:

The International Topical Steroid Addiction Network, ITSAN, was originally formed to raise awareness about a condition called Topical Steroid Addiction and Withdrawal, now known as Red Skin Syndrome. Since its founding in 2012, ITSAN has grown into a wide online community of RSS sufferers around the world contributing ideas, funds and inspiration.

You can get more information from the website here.

What is RSS?

RSS or Red Skin Syndrome, also known as Topical Steroid Addiction (TSA) or Topical Steroid Withdrawal (TSW), is a debilitating condition that can arise from the use of topical steroids to treat a skin problem, such as eczema. RSS can also arise from topical steroid use in individuals with no prior skin condition; such as with cosmetic use for skin bleaching or to treat acne, or in the case of caregivers who neglect to wash their hands after applying topical steroids on someone else.

Topical steroids are also called topical corticosteroids, glucocorticosteroids, and cortisone. They come in many different preparations including creams, ointments, oils, gels, and lotions. Some are sold over-the-counter; others require a doctor’s prescription.

RSS is characterized by red, itchy, burning skin that can appear after ceasing topical steroid treatments, or even between treatments. In RSS, topical steroids are effective for a period of time to treat the skin condition. As time passes, however, applying topical steroids results in less and less clearing. The original problem escalates as it spreads to other areas of the body. In the case of eczema, this “progression” is often mistaken for worsening eczema.

RSS is an iatrogenic condition, which means it is a condition caused inadvertently by a medical treatment. Not everyone who uses topical steroids will develop RSS. It is unclear why some individuals experience RSS secondary to topical steroid therapy and why others do not.

Why is RSS sometimes called “Topical Steroid Addiction” or “Topical Steroid Withdrawal”?

The terms Red Skin Syndrome (RSS), Topical Steroid Addiction (TSA), and Topical Steroid Withdrawal (TSW) are often used interchangeably, and sorting out the acronyms can get a little confusing. Each of these terms has a slightly different meaning, so some background can be helpful.

Topical Steroid Addiction (TSA)

The term “addiction” is used to describe a situation that includes both 1) increased tolerance to a given substance and 2) well-defined physiological symptoms upon withdrawal. “Topical Steroid Addiction” describes the origin of Red Skin Syndrome, in which the body develops tolerance to topical steroid therapy— requiring more of the drug to be used to achieve the previous therapeutic benefit, and causing the skin to “rebound” upon withdrawal. The medical term for becoming tolerant or resistant to treatment is “tachyphylaxis.”

The “rebound effect’ or “rebound phenomenon” is defined as the emergence or re-emergence of symptoms that were either absent or controlled while taking a medication, but appear when that same medication is discontinued, or reduced in dosage. In the case of re-emergence, the severity of the symptoms is often worse than pretreatment levels.

Topical Steroid Withdrawal (TSW)

“Withdrawal,” in reference to medication, is defined as a group of symptoms that occur after stopping or reducing intake of a drug. “Topical Steroid Withdrawal” refers to the symptoms that occur when someone with RSS stops topical steroid use, reduces potency, applies topical steroids to reduced areas of the body, or applies them less often. Weaning, stepping down or ceasing use can all cause varying degrees of withdrawal symptoms.

In the RSS community, “TSW” is also used to reflect the timeframe of the withdrawal phase. For example, “6 months TSW” refers to the time that has passed since ceasing topical steroid treatment.

What are the most common symptoms of RSS?

The symptoms of RSS fall into two categories: symptoms that appear while using topical steroids and those that appear after discontinuing topical steroid use.