The Functional Nurse
Topical steroid withdrawals
ECZEMA, PSORIASIS, DERMATITIS? MUST READ!
The skin is the largest organ in the human body. The epidermis (the outer most layer of the skin) provides protection for the human body through specialised cells involved in immunity. Eczema presents on the skin as dry, itchy and flaky patches that can stem from mild to severe/debilitating.
Eczema, Psoriasis, Dermatitis, Rosacea and Eczema are becoming more and more common and can often all stem from a “malfunctioning immune system” (Myers, 2016). The increase in use of antibiotics, medications, western diet, lifestyle, topical synthetics and environmental triggers can play a major role in triggering the inflammation.
When you present to a GP with any of the above inflammatory skin disorders, you are often prescribed corticosteroids. Corticosteroids applied topically to the skin can help control the body's inflammatory responses. Topical steroids are used as anti-inflammatory agents to reduce the swelling and redness of lesions. Steroids can bring amazing relief to those suffering with the pain and discomfort of eczema, dermatitis and psoriasis however they do not treat the main cause nor are they are sustainable long term.
According to the National Eczema Association, topical steroids are often used to treat eczema but when applied in large doses or incorrectly, the body can become addicted to the medicine and react severely. This condition is called Topical Steroid Withdrawal or TSW.
TSW can present as redness, extreme sensitivity, recurring inflammation, skin lesions and more. TSW can be a viscous cycle for patients who have not been properly informed of steroid use. Patients often mistake TSW for another ‘Eczema flare up’ and therefore apply more steroids which intern feeds the dependence.
L) Topical steroid withdrawal R) Healed after TSW flare up
The skin can tell us when it’s absorbing too much of the steroid; this is when patients start to see the ‘fine print’ side effects. Side effects of topical steroids most commonly present as increased blood vessels or thinning of the skin, loss of pigment or puffiness.
TSW is increasingly being discussed in social and mainstream media; however, it has received little attention in medical publications. This adds further stress for those suffering with the condition as there are no current treatment protocols in place.
As a former long term corticosteroid user for my eczema, I am passionate about raising awareness of the risks for both patient and also Practitioner. Although there is no known cure, other than time, Practitioner awareness may result in prevention.
I have interviewed a TSW warrior who has been battling with withdrawals for five years now. This blog is not to scare you. Corticosteroids, like all western medicine, have a time and a place in medicine. This blog is to help raise awareness, open the discussion and also connect any followers who may be suffering with the help and information they need.
Emily moana - @tswsurvivor
INTERVIEWEE: Emily
Find her n instagram at @tswsurvivor
When and why were you prescribed steroids?
I was prescribed steroids to control mild eczema from multiple doctors and specialists from the age of 7- 27 in New Zealand and Australia. I remember when I was around 10 years old, I was prescribed steroids mixed with moisturiser and told to apply it all over daily as a preventative (eeeeek)!
How was your skin prior to steroid use?
I had mild childhood eczema which began when I was around 7 years of age. Over the next 15+ years I had beautiful skin with a little eczema from time to time which the steroids would completely clear up. It was until around the 15 year
mark where I had to start using a stronger and stronger steroid to control the eczema, which started getting worse and spreading.
Were you thoroughly informed of the possibility of TSW when you were consistently prescribed steroids?
I was never informed of tsw. The only side effect I was told about which was briefly mentioned over the years was that steroids can thin the skin and only use a small amount, which I did.
How are you treating your skin now? Are you using any natural alternatives?
When my skin is clear I don’t use anything just a basic moisturiser/natural balm if I need it on my face. The skin on my body is great. Unfortunately at the moment I am having tsw relapse which I treat with Dead Sea salt baths. My skin feels better with no creams or products, producing its own natural oils. If for example I shave my legs and need a little extra moisture, I use a natural balm made from organic essential oils, bees wax and Shea butter.
How do you plan to holistically treat your skin in the future without the use of steriods? Once the damage that was done from 20 years of steroid use is healed, my skin will not need any treatment and I will be able to manage any mild eczema if it happens (which I doubt) through my continued healthy diet and lifestyle, Dead Sea salt baths, and the sun and ocean. Many tsw warriors have gone on to heal and never have eczema ever again.
Further comments from Emily:
Steroid use creates steroid induced eczema, and steroid addiction so worsening your eczema over time! If you ever have to increase the strength of topical steroids to achieve the clearing of your eczema unfortunately your body is now in the cycle of addiction and the only way to heal is to stop using the creams and go through withdrawal. Topical steroid withdrawal is a living hell which can take years to heal from and pushes you to mental, emotional and physical limits you didn’t even know you were ever capable of dealing with. If I could describe how tsw feels - it feels like the worst sunburn you have ever had in your entire life where heat radiates off your body. Your skin becomes fragile like wet paper and scratching it, it falls away to bleeding. The itch feels like the intense itch of a mosquito bite but on your whole body at the same time 24/7 down to your bones, and the only thing to stop the itch is when the bleeding and pain becomes too intense. I remember waking up and my skin had split open on its own and began leaking fluid. Everywhere on my body leaked, including my eyes, ears, skin and I also coughed up fluid. Loads of my hair fell out and I considered shaving my head. I lost 20kg, and could not get out of bed for about 6months. I could not shower for around 4months. My skin got so bad I was hospitalised 3 times and I was so sick I had to take 1 year off work. I was disabled, and my mum had to fly over from New Zealand to help look after me. I had to inform doctors and specialists of what was happening to me and some laughed at me, and refused to look at the research papers and reports I brought in to show them.
There needs to be far more awareness about this. I am gratefully on the other side, almost healed, but almost 5 years after stopping the use of steroids it is still affecting my body. I am one of the lucky ones, as I have met fellow tsw warriors who have gone on to suffer from further steroid side effects like cataracts and osteoporosis.