Topical Steroid Withdrawals and Steroid Phobia

If Steroids are so Good, Why do you Need Them in Stronger Potencies?

Disclaimer: With all medications there are potential side effects. Depending on what you are treating you must weigh up the benefits against those potential side effects. 

There is a phobia against steroid use in today’s society for a reason. Thanks to the internet, social media, non-for-profit organizations and forums, the public have more access, knowledge and a better understanding of what those potential side effects from medications can be.

Steroids were introduced 70 years ago to treat skin conditions like atopic dermatitis and psoriasis. But the world is a very different place today. There are other options. There are also peoples own personal experiences available for you to connect with and their experiences can help you make better educated choices for yourself.

However, medical journals and dermatologists are on a mission to intervene using words like ‘misinformation’, ‘disinformation’ ‘propaganda’ or ‘conspiracy theory’ against the growing phenomenon that is TSW (Topical Steroid Withdrawal). They claim everyone has Steroid Phobia.

And you’ve got to ask yourself why?

Why aren’t they helping us get to the root cause of our skin conditions as opposed to slapping on a quick fix which may result in your skin needing that medication ongoing. The very thing that has known side effects?

Let us use eczema sufferers for an example. Anyone can google “is there a permanent cure for eczema?” And the answer is no, there is not a permanent cure for eczema. It is an ongoing skin condition that will flare up on and off through one’s life.

So, with that in mind are the risks of prolonged use of steroids worth it if that’s what’s recommended by dermatologists to “manage” a lifelong skin condition like eczema? Or have them prescribe you a stronger potency steroid to treat your flare ups because your skin's gotten used to what you’ve already been using?

As quoted by the non-for-profit National Eczema Society in the UK "TS (topical steroids) are used to treat or prevent flare-ups, but are NOT a cure for eczema. Occasionally people can become allergic to the cream. Using large amounts of TS can thin the skin and the steroid may be absorbed into the bloodstream. Babies and children can be treated with TS, but their delicate skin is more likely to absorb steroid and therefore only milder TS should be used. If enough TS is absorbed, it acts like a steroid medicine taken orally as a tablet or by injection: it can suppress the body’s natural production of corticosteroid causing health problems. Prolonged use of strong TS can result in TSW (topical steroid withdrawal)".

@ampernaskin Topical Steroid Withdrawal is a major issue people suffer through after prolonged use of topical steroids but is not often spoken about enough! We are using our platform to help spread awareness of topical steroid withdrawal. #tsw #tswwarrior #topicalsteroidwithdrawal #topicalsteroidaddiction #topicalsteroidwithdrawals #topicalsteroidwithdrawluk #topicalsteroidwithdrawalsolution ♬ original sound - Amperna® Skincare

So, the big question is, if there are safer alternatives to help soothe eczema flare ups, especially in children, wouldn’t you rather use those as opposed to steroids that may cause you serious health problems down the track? Wouldn’t you rather manage your concerns through diet and avoiding exacerbators instead? 

However, this article by Oxford Academy quotes the following: "Topical steroid withdrawal’, ‘red skin syndrome’ or ‘TCS addiction’ is a particularly prevalent MYTH currently being propagated on social media, with most social media content suggesting that eczema is due to a ‘leaky gut’ or food intolerance and not to skin inflammation". 

It adds "The risks of potential adverse effects such as skin thinning, and stunted growth/development are often exaggerated. Multiple websites promoting misinformation were frequently endorsed by companies advertising consultations or testing to identify ‘underlying causes’, or ‘natural’ products as alternative treatments".

Image from the Oxford Academy article

I spoke to Jordan Hendey (who is pictured above in the Oxford Academy Article labelled 'misinformation’) about his experience with topical steroids and his current journey of TSW (topical steroid withdrawal).

You can watch the video here:

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A post shared by AMPERNA® Probiotic Skincare (@ampernaskin)

The National Eczema Society explains TSW (Topical Steroid Withdrawal):

"After stopping Topical steroids other problems may develop. Often the original condition comes back worse than how it began when the treatment stops, referred to by patients as ‘topical steroid withdrawal’, ‘red skin syndrome’ or ‘topical steroid addiction’. These are severe reactions that can occur when moderate - high-potency topical steroids are stopped after prolonged use, usually more than a year and usually to treat eczema. They suffer red or darker burning skin, often in areas where they never had eczema before. They can feel tired and weak and may even be bed-bound. The condition can continue for months or years. Prolonged use of potent and very potent TS may even suppress the body’s own normal steroid production. This is called hypoadrenalism and causes severe weakness and low blood pressure. It says, “Dermatologists would call this erythroderma or erythrodermic eczema.”

With signs and symptoms the same as topical steroid withdrawal:

• The skin feels warm to the touch.
• Itch is usually troublesome and is sometimes intolerable. Rubbing and scratching leads to lichenification.
• Eyelid swelling may result in ectropion.
• Scaling begins 2-6 days after the onset of erythema, as fine flakes, or large sheets.
• Thick scaling may develop on the scalp with varying degrees of hair loss including complete baldness.
• Palms and soles may develop yellowish, diffuse keratoderma.
• Nails become dull, ridged, and thickened or develop onycholysis and may shed (onychomadesis).
• Lymph nodes become swollen."

You can read the article by DermNet here: Erythroderma | DermNet (dermnetnz.org)

Another article available on DermNet explains the following on TSW (Topical Steroid Withdrawal): "One of the difficulties is determining whether the skin reaction observed is due to the stopping of topical corticosteroids or is simply a worsening of the underlying skin disease for which the topical steroids had been prescribed".

It also states "Prevention is best, with patients and doctors being alert to the risk and avoiding prolonged frequent and prolonged use of moderate to high potency topical corticosteroids. The higher the potency, the longer the period of application (i.e., more than one year), and the more frequent the application (more than once daily), the more likely that topical corticosteroid withdrawal may occur."

Topical corticosteroid withdrawal | DermNet (dermnetnz.org)

So, our question to the medical world and dermatologists is why start patients on topical steroids to begin with if they’re not recommended for prolonged use and there’s a potential risk your skin my become addicted and need stronger potency or stronger form of steroid?

Also why are we gaslighting real life patients like Jordan Hendey (above) and suggesting that their TSW symptoms are propaganda. Why can’t their symptoms be used as evidence that this is actually occurring due to the mis-use of steroid treatments?

The UK Government has recognised #TSW and regulations are implemented to include warning labels within the packaging for all steroids both prescribed and over the counter.

Below is an example of these warning labels inside the packaging:

Mometasone Furoate is a prescribed steroid

4. POSSIBLE SIDE EFFECTS

Like all medicines, this medicine can cause side effects, although not everybody gets them.

If any of the side effects gets serious, or if you notice any side effects not listed in this leaflet, please tell your doctor or pharmacist.

A few people may find that they suffer from some of the following side effects after using Mometasone Furoate 0.1% w/w Ointment:

• allergic skin reactions
• bacterial and secondary skin infections
• acne
• inflammation and/or infection of the hair follicles
• thinning of the skin
• red marks with associated prickly heat
• loss of skin colour
• burning
• stinging
• itching
• tingling
• excessive hair growth
• softening of the skin and stretch marks
• blurred vision
• Steroid withdrawal reaction: If used continuously for prolonged periods a withdrawal reaction may occur on stopping treatment with some or all of the following features: redness of the skin which can extend beyond the initial area treated, a burning or stinging sensation, intense itching, peeling of the skin, oozing open sores.

Other side effects that may occur with topical corticosteroids are dry skin, skin irritation, dermatitis, dermatitis around the mouth, and small dilated blood vessels.

https://www.medicines.org.uk/emc/files/pil.9994.pdf

Thanks to TSW advocacy groups like ITSAN ITSAN – Support for a global community living with Eczema and TSWS who advocate, educate, support and spread awareness about topical steroid withdrawal, this is the change that is needed for the health and wellbeing of people suffering from skin conditions.

But when will the rest of the medical and dermatological world agree that TSW is not a ‘’MYTH” as quoted by the Oxford Academy article and that we need to have more support and training around proper care for the largest organ of our body. Safely.

What are Topical Steroids?

Also referred to as topical corticosteroids, cortisone and glucocorticosteriod. ‘Topical’ means applied directly onto the skin. ‘Steroids’ are a group of natural hormones, produced in the body by a variety of different glands. They are also produced synthetically as medicines and given as creams/ointments, injections and/in tablet form.

Topical steroids come in different strengths or potencies. Which topical steroid/s you are prescribed will depend on the severity of your eczema, your age, the part of your body that is affected and any other treatments you are using.

Adverse Effects

If used over long periods of time, topical steroids can thin the skin, making it appear transparent, fragile and susceptible to bruising; blood vessels may become more prominent, and the skin can lose its elasticity. Other possible side effects include increased hair growth of very fine hair and perioral dermatitis.

The Australian Journal of General Practice states, "Topical steroids work via their anti-inflammatory, immunosuppressive and antiproliferative effects. Adverse effects, such as skin atrophy, striae, telangiectasia, easy bruising, and hypertrichosis, are rare if TCS agents are used correctly. Periorificial dermatitis, steroid rosacea, red skin syndrome, contact dermatitis and pigment alteration are uncommon, and hypothalamic–pituitary–adrenal axis suppression is extremely rare. Nevertheless, it is necessary to be mindful of iatrogenic Cushing’s syndrome, growth retardation, cataract and glaucoma due to systemic absorption; such occurrence might be attributed to prolonged misuse of potent or ultrapotent TCS agents over large skin areas and/or occlusion causing increased systemic absorption, especially in susceptible individuals (young children and elderly patients with thin skin)".

You can read the article here - RACGP - Selection of an effective topical corticosteroid

There are two types of topical steroid that can be bought over the counter from a pharmacy without a prescription: 1% hydrocortisone cream, a mildly potent topical steroid, and Eumovate (clobetasone butyrate 0.05%), a moderately potent topical steroid cream. 

Topical steroid potencies

The potency of a topical steroid depends on:

• The specific molecule
• The amount that reaches the target cell
• Absorption through the skin (0.25%–3%)
• Formulation

Here is a breakdown of the different topical steroid potencies:

Class 1: Super potent

These are the strongest topical steroids and used to treat severe skin conditions. Examples include, clobetasol propionate, betamethasone dipropionate and halobetasol propionate. They should be used for a brief period of time and in small amounts due to their high risk of side effects.

Class 2: Potent

Luocinonide, mometasone furoate and betamethasone valerate are examples of strong steroids which should only be used for a short period of time and in small amounts.

Class 3: Upper Mid-Strength

These are less potent than class 1 and 2 steroids, examples include triamcinolone acetonide and betamethasone dipropionate. 

Class 4: Mid-Strength

Fluticasone propionate, mometasone and betamethasone valerate are less potent than class 3 steroids and are said to be able to be used for longer periods and in larger amounts. 

Class 5: Lower Mid-Strength

These are less potent than class 4 steroids, examples include hydrocortisone valerate and fluocinolone acetonide.

Class 6: Mild

Hydrocortisone and desonide, these are the mildest topical steroids and are stated to be safe to use for extended periods of time and in larger amounts. They are usually used for mild skin conditions and for sensitive areas.

NOTE: Inhaled steroids are even stronger than topical steroids. Systemic steroids (oral) are x4 – x5 times stronger than topical form and come with higher side effect risks.

If you need more information on inhaled or oral steroids you can email Kiri at info@amperna.com

Topical Steroid Percentage strengths

Here is a list of topical steroids and their percentage strengths:

1. Hydrocortisone: 0.5% - 2.5%
2. Triamcinolone acetonide: 0.025% - 0.5%
3. Betamethasone dipropionate: 0.05% - 0.25%
4. Clobetasol propionate: 0.05%
5. Fluocinonide: 0.05%
6. Desonide: 0.05%
7. Mometasone furoate: 0.1%
8. Halcinonide: 0.1%

Topical Steroid Table

Summary

AMPERNA^® advocates for more awareness and education around steroids, their risks and we want to help spread the word that steroid withdrawal is a real and debilitating side effect.

If steroids are prescribed by doctors and dermatologists they need to be open and transparent about these real risks and side effects and give patients a thorough plan in proper use. Plus they also need to be there to help patients wean from steroids safely to avoid risking steroid withdrawal.

I am passionate about this topic, she was hospitalised after her experience with oral steroids. Examples of me addressing questions regarding topical steroids and topical steroid withdrawal are below. 

If you are currently using any form of steroids or experiencing steroid withdrawal you can reach out to me any time, either by email at info@amperna.com or DM the AMPERNA^® Instagram page.  

@ampernaskin How to help steroid withdrawl - I started my skincare brand from my own personal struggles with my skin & health in general. If you need help feel free to email me anytime info@amperna.com 📧 #topicalsteroidwithdrawal #acne #acnetreatment #acneskin #acneremoval #acnecheck #eczema #eczematok #perioraldermatitis #skin #skincare #skincaretips #skinhelp ♬ Escapism. Sped up (Official) - RAYE & 070 Shake

@ampernaskin How to help my skin - Kiri helps her customers 1:1 with her skincare company Amperna Probiotic Skincare. If you need help with a skin concern such as Acne, Eczema, Perioral Dermatitis, Rosacea Etc you can email us at info@amperna.com #skincare #skincaretips #bestskincare #holistichealth #holistic #acne #acnehelp #bestacneproducts #acneproneskin #tsw ♬ Aesthetic - Tollan Kim

@ampernaskin Replying to @kaley.nicole thank you for your comment we are open to having these conversations surround medications if you have any questions feel free to get in touch #eczema #eczemaawareness #topicalsteroidwithdrawal #topicalsteroidaddiction #topicalsteroidawareness #eczemaflareup #eczemahealing #immunosuppressant ♬ Flowers - Miley Cyrus