Amara Howe

 

What is Red Skin Syndrome? A condition which arises from the prolonged use of steroid creams – creams used to treat skin conditions such as eczema

What are the side effects of Red Skin Syndrome? Extreme redness of the skin. Severe itching. Burning. Stinging. Oozing.

Is Red Skin Syndrome curable? Yes, but only by withdrawing from the creams – this can take anything from a few months to years.

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Eczema is one of the most common skin conditions in the world, affecting up to 20% of children and 1-3% of adults worldwide. Itchy, red, dry and cracked skin, eczema, also known as dermatitis, can be a pretty shitty ride for a lot of individuals. But what happens when the eczema becomes more than just an itch? What if it ends up taking over your life?

ECZEMAWORLDWIDE

A billion-pound business, the steroid industry is an incredibly trendy one to say the least. Have a small patch of eczema on your leg? Rub in some steroid cream and see your skin heal within a matter of days. But just how beneficial is this quick-fix? And who’s to say the eczema won’t return… for the worse?

Barely recognized within the medical industry, topical steroid addiction has been long deliberated. It’s a condition where eczema sufferers who have routinely used steroids – sometimes for decades – discover that they cannot live without them. When they try to withdraw their skin flares up, in some cases turning their skin bright red, which is why it’s often called “Red Skin Syndrome”.

 

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Image from red-skin-syndrome.com

 

Sufferers who have experienced Topical Steroid Addiction (TSA) say there are only two ways of getting comfortable: either using steroid creams again, when they can eventually stop working altogether, or quitting cold turkey and waiting for their skin to get better – which in extreme cases can take years.

With a clear majority of doctors and dermatologists unaware that TSA exists, many individuals have self-diagnosed themselves with the condition. This self-diagnosis is not always recognised by medical professionals, making it even more difficult to get treatment.

The burning question

Severe eczema or Topical Steroid Addiction? That’s the burning (literally) question on everyone’s lips (and arms, legs, face, scalp etc.). Does severe eczema even exist or is it really an underlying addiction to creams? Your skin is basically saying “Look mate. I’ve had enough. Let me breathe.”

Used for over 50 years, topical corticosteroids have been used to help treat skin conditions including eczema and psoriasis. According to the National Eczema Association, when used properly, they can effectively help treat a patient’s symptoms and help “restore their quality of life”.

But what if these creams are used improperly? What if they wreck a person’s quality of life?

Two years ago, it was reported that a 23-year-old man committed suicide because his eczema had become “unbearable”. According to The British Skin Foundation, eczema “should be controllable with the right treatment.” Shoulda, woulda, coulda – what drove this man to kill himself? Many believe his skin was addicted to steroid creams.

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Kevin Fang, 18, a London-based college student currently five months into withdrawing himself from topical steroid creams said: “Eczema causes a huge worsening quality of life and can’t be understood by those who haven’t had it. The thought of the medication making a condition worse for them is simply unheard of.

“The problem is that eczema/TSW isn’t life-threatening. Dermatologist’s continue to prescribe medication that after a while they see has a worsening effect, but don’t second-guess themselves.”

You gotta go cold turkey baby

The recognition of addiction to steroid creams was first documented in the International Journal of Dermatology in 1979. Author Albert Kligman said addiction to the creams would continue unless doctors recognized the harm which steroids were doing when used in excessive quantities.

 

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Steroids do harm in excessive quantities

 

The term “Red Skin Syndrome” was first coined in 2003 by Dermatologist Dr Rapaport. He analysed various case studies looking at the prolonged effects of steroid creams on eczema patients and the after effects of discontinued usage. Noticing “rebound flares”, Rapaport suggested withdrawal was necessary for the skin to improve.

According to ITSAN, the “Red Skin Syndrome Support Group”, the syndrome is a condition which can arise from the use of topical steroid creams. Despite understanding their effectiveness, ITSAN urge proper use of the “powerful drugs.” ITSAN recognize Red Skin Syndrome as an iatrogenic condition (illness caused by medical treatment) and say cessation of the topical steroids is necessary for improvement.

So basically, like an alcoholic, alcohol must be removed for the patient to see any form of improvement. This “cold turkey” style is what many sufferers have done.

 

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Cara Ward who went ‘cold turkey’ on steroids

 

Dermatologist and Chair of Dermatology for England George Moncrieff said: “Emollients are the cornerstone for managing eczema. If you are going to use a topical steroid they only need to be used once a day and should be used as an ointment, not a cream. You should start strong and reduce.”

With over 7,500 members on the Topical Steroid Withdrawal – Red Skin Syndrome Support Group on Facebook, it’s clear many are aware of the dangers of steroid creams and many are withdrawing from their creams without the supervision of a dermatologist or doctor.

 

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Topical Steroid Withdrawal – Facebook Support Group

 

Why? Because no one bloody knows about it. Why? Because people just assume it’s eczema.

Whether it’s simply ignorance or the refusal to believe that a steroid cream could cause such suffering, doctors are continuing to push steroids on their patients. With side effects including blistering, burning and thinning of the skin, you’d think doctors would consider offering alternatives.

According to Mireya Pineda, 25, a retention specialist from Massachusetts, US, who is currently 13 months into withdrawing from steroid creams, she is “over 95%” healed, despite her allergist telling her she’d have to apply steroids on her skin for the rest of her life. “She very coldly stated I would have to use this for life. That eczema is incurable and that I needed to control it.”

 

 Meet the Lobsters

These women are currently going through something called “Topical Steroid Withdrawal” – a withdrawal from steroid creams after their skin became too dependent on them.

 

Briana Banos, documentary film-maker, 28 from, Florida, USA is one of those individuals.

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FAVOURITE FOOD: Mexican food

FAVOURITE SONG: Hanson – MMMbop

CELEBRITY CRUSH: Tom Hiddleston

WEIRDEST FACT: I can touch my tongue to my nose

HOW WOULD YOU DESCRIBE TSW IN 3 WORDS: Easily preventable agony

 

“When I saw the photos, I knew this was what I had. I was in denial… but I knew.” Briana Banos, who is now in her 29th month of steroid withdrawal (as of June 2nd), told me about the time she first googled “topical-steroid addiction”. “I was searching the internet and found some of the ITSAN (Red Skin Syndrome Support Group) people.” It was the first time that Banos had found some kind of relief – she finally knew why her skin had been causing her such grief.

First developing eczema when she was around five years old, Banos’s first experience with steroids came when her mother applied OTC hydrocortisone on her skin. She herself continued applying this on a regular basis throughout her whole life up until her withdrawal. “I started using a Class 6 steroid (a mild steroid) in 2012 and used it on and off for around three and a half years,” she said irritably. “Before I began TSW, the flaring was so bad I had two sets of oral prednisone (an oral steroid) and a steroid injection.”

Banos – who was a dancer and performer before the ordeal – explained in 2014 she was having “more eczema spots than ever” flaring in various places on her body where she had never had eczema before. She said: “It just seemed like I needed more and more coverage of the steroid on my body.”

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Briana in 2013

Currently, Banos’s flaring is only slightly noticeable – her neck and face are still a little red and her hands and elbows are wrinkly from excessive rubbing.

Compared to this time last year, Banos’s skin has improved dramatically. She had had to shave her hair in order to help relieve her itchy scalp and she also began collecting skin in jars. YEP, you heard it, jars of skin. That may sound nasty, but Banos did it to prove this wasn’t just your normal eczema – this was a skin condition caused from the overuse of corticosteroids.

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Briana’s skin in jars!

“I’d basically just live on the couch all day, either writing or watching movies. Basically, I just watched the best days of my life pass away,” Banos reminisced the previous year of “hell”. “I would peel myself out of bed and go straight to the bathroom”, she said, where she’d take an Epsom salt-bath for around 45 minutes to shed some dead skin.

After her long bath, she would “bandage” herself in zinc (Sudocrem), applying the cream to where she was oozing (literally), and put on the comfiest clothes possible. “Once I’d work up some energy, I’d go vacuum my bed and sweep the bathroom since my skin would be everywhere.”

At one point Banos even tried moisture withdrawal to prevent the itch– a complete ban on any creams at all, in order to help the skin breathe and heal naturally. While this has been proven to help speed up the healing process, the extreme dryness is incredibly noticeable. “I didn’t let anyone see me but my husband, mother and stepfather.”

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Briana’s extremely dry skin

During this time Banos’s (now ex) husband were celebrating their first anniversary and took a trip to the Atlantic Zoo and Aquarium. At the time Banos’s skin was so dry she could barely move and her husband had to push her around in a wheelchair. “Some kids would be at eye level and would flat-out stare at me,” she said distressed. “I felt like I was one of the animals on display.”

Banos, who is well-known within the Topical Steroid Addiction community, began making Youtube videos about her addiction and withdrawal in May 2016, and has received thousands of views since. After her first video where she filmed herself shaving her hair off, her videos have been viewed by thousands of people from around the world, many including those suffering with the condition.

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Briana on Youtube

From tips on how to combat the itch to diet advice to a charity fund dance for her up-coming documentary “Preventable” – a film about the dangers of topical steroids – Banos’s channel is extremely supportive for those going through the condition.

Banos ran through with me the worst symptoms of the condition, which included oozing, intense itching, tight, flaking skin, hair loss and a “deep-burning”. According to ISTAN, deep-burning is one of the most common symptoms of Topical Steroid Addiction. However, Banos said despite the physical aspect, the emotional toll “can sometimes be even worse than the physical pain”.

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Briana’s face flaring

Despite being well on her way to healing, Banos said just how much the withdrawal has affected her confidence. “I have anxiety every time I leave the house. I’m always afraid people are staring at me or looking at me because of my skin… it truly plays with your mind and the way you interact with people.”

Banos explained that she doesn’t even bother going to the doctor anymore. “Most doctors just negate everything I say. They just push the steroids and say my skin won’t get better without them.

“I feel steroids are only masking a problem that we aren’t dealing with. Yes, they can be used for eczema but I don’t feel they are a true eczema treatment. I think if they are used for one to two weeks, then OK but it usually doesn’t end up being the case.”

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Briana this year – still suffering but better

Considering the years Banos spent applying steroids creams, there’s still a long way to go until she is fully healed. When I asked her about what she wanted to do when she fully healed she had a long list of things, most importantly “continuing to work on my self-confidence and well-being.”. With withdrawal taking a toll on her body she also said “get back into shape, swim in the sea, take a much needed trip somewhere new. Perhaps I’ll even write a book.”

Well, it’s safe to say we’ll definitely be reading that book!

 

Meet Stephanie Shaw, 26, part-time bakery worker, originally from Croydon, London

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FAVOURITE FOOD: Brownies

SONG: Anything from the Hamilton soundtrack

CELEBRITY CRUSH: Joseph Gordon Levitt

WEIRDEST FACT – Having over 1000 people watch my skin recover online

“I remember about 40 days in, my entire skin felt like plastic that was too small for my body. In order to be able to move, my skin had to split and crack.” Shaw, who has just celebrated a year of withdrawing from steroid creams, reminisced about one of the worst days of her early stages of withdrawal. “I spent the majority of the day in the bath just waiting for my skin to fall off. That was the first of hundreds of layers and it was the most painful.”

Shaw, who says she was “poisoned” by topical steroids, used the creams for eight years between the ages of 18 and 25 before she noticed nothing was improving her rapidly worsening skin. Becoming incessantly itchy to the point of drawing blood, Shaw knew this wasn’t “regular eczema”.

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Shaw at her worst during the withdrawal

After searching on Google for “severe eczema”, Shaw discovered ITSAN, the ‘Red Skin Syndrome’ support group, online. After watching an ITSAN-related video which depicts a young girl with worsening eczema who constantly relied on corticosteroids to help improve her skin, Shaw knew what she had to do. “Withdrawal was necessary for me to improve,” she said.

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Documenting her withdrawal on Instagram since the start of her journey in April 2016, Shaw has been through a journey one could only describe as a nightmare. From blood-stained sheets prior to 18-hour baths, two months without going outside of the house to never-ending insomnia, Shaw has only started to see an improvement since the beginning of this year.

Every single day (literally) since her withdrawal, Shaw has been posting updates on her Instagram (@tswsteph) where she informs others of her battle with Topical Steroid Addiction. From heart-breaking pictures of Shaw crying in the bath with cuts all over her body from scratching, to happier days when her skin is calm and she’s able to go out of the house, her Instagram is a journey in which many have followed from the start. With over 1,000 followers, many of whom are also on the ‘TSW’ username bandwagon, Shaw is undoubtedly inspiring individuals.

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Steph captures her pain on her Instagram

“I can either shy away from it or share it,” she said. Despite having to quit her full-time job in retail soon after her withdrawal and move back in with her mum and dad, Shaw’s upbeat personality is what makes her so endearing. “Maybe it’s the anti-depressants,” she joked as I commented on her lively nature.

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Transformation Tuesdays!

“There have been points where I’ve thought: ‘what I would give to just put on some steroids and have normal skin?’ but I have never come close to actually doing it,” Shaw said. Now, with over a year of seeing her skin transform, Shaw often uploads #transformationtuesdays which compares her skin with exactly 365 days’ difference. From patchy swollen blood-drawn legs to smooth white pins, the change is remarkable.

Now working part-time in a bakery, Shaw says she is now at a place where she can function from day to day without constant flaring. “I love being back in society and my company is really flexible – it’s very lucky that they are able to accommodate my needs!”

Shaw is also the brains behind ‘The TSW London Network’, a Facebook group where those thinking of, undergoing or undergone steroid withdrawal meet up once a month in the city to talk all things itchy. From trips to vegan restaurants to gluten-free ice cream parlours, the meetings are a chance to meet others going through the horrendous ordeal too and talk about it in a friendly, open environment.

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The TSW London Network out for lunch

Sean Dillnutt, 33, a support worker from London and a member of the network group, said: “The network is a place of compassionate people who truly appreciate what difficulties are experience when battling to free of the extremely harmful steroid creams.”

Despite almost being healed, Shaw said she still feels very vulnerable. “My anxiety is much higher than it used to be and that’s because I will like I’m waiting for my life to return.” Losing friends throughout her withdrawing process, Shaw remains positive. “I only need people in my life who are going to be there for me during the bad times as well as the good.”

Doing yoga and exercising on a regular basis, Shaw is doing a lot to help both her physical and mental health. She also told me about meeting new friends through the Bumble Best Friend app including Ivy, who she met along with her dog, for lunch last month [see photo]. “It was cool, we’ve been chatting every day for a couple of months now.” There you have it – sistas are doing it for themselves.

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Bumble Best Friends
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Getting fit!

 

 

Meet Cara Ward, 29, writer from London

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FAVOURITE FOOD: Cheese

FAVOURITE SONG – Charles Aznavour – She

CELEBRITY CRUSH – Tom Selleck

WEIRDEST FACT – Probably that I love Tom Selleck

HOW WOULD YOU DESCRIBE TSW IN 3 WORDS – Challenging. Transformative. Strengthening.

“Pre-Topical Steroid Withdrawal I had very little self-belief. I gave up on everything I truly wanted either because I was scared or didn’t think I was good enough.” Cara Ward is one of the very few people to have fully healed from Topical Steroid Addiction. After two years of withdrawing, Ward reminisces about who she was as a person before she decided to quit steroids.

“I dated the wrong men, I had jobs that were going nowhere and I let people walk all over me,” Ward said. “During the withdrawal I did a lot of thinking about my life and where I was going and started to understand why I behaved and felt the way I did about myself.”

Ward, who believes stress was the original perpetrator behind her eczema, said withdrawing from corticosteroids has changed her life, for the good. “All I was told was that my eczema was incurable and my only option was various drugs.”

 

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Transformation!

 

 

Now, Ward no longer suffers with eczema at all. Her skin is porcelain white and soft (yeah, I touched it) and she has freckles all over her body.  Go back three years ago and it’s an ENTIRELY different story.

First developing eczema when she was around six months old, the doctors diagnosed Ward with the condition and prescribed her Hydrocortisone to “manage” it. With thanks to her mum who was “very, very wary of using them too much”, the topical steroid was applied very sparingly throughout childhood. However, as her eczema got worse throughout her teens she was prescribed a course of both oral steroids, stronger topical steroids and immunosuppressants.

Aware of steroids thinning the skin, Ward said: “I had a routine which worked for me for many years where I would squeeze a fingertip-sized amount of steroids onto the back of my hand daily and apply this to my hands, wrists and a bit under my chin.” However, this routine eventually stopped working, and her eczema kept coming back with “vengeance”. “I was noticing rashes were appearing on my arms and legs and topical steroids just weren’t effective anymore. I felt completely trapped by my own skin.”

On the 6th June 2013, Ward googled ‘addicted to steroid creams’. “All this information came up about Red Skin Syndrome and Topical Steroid Withdrawal. I knew I had found the answer to my ‘eczema’ and stopped using all topical steroids and immunosuppressants there and then and I haven’t looked back since.”

Her instantaneous choice was a relief unlike anything she had felt before. “I had found the answer and thankfully it turned out to be the right one.” What followed was almost two years of hell.

 

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Flaring all over

 

Quitting her job just a few weeks into withdrawal, Ward said “it became impossible to do much at all… my mum told me to stop working and said she would support me financially”.

In the first year of withdrawal, she barely slept at all. She lost almost half the hair on her head and eyebrows, and told me just how horrendous her ordeal was. “As if acid had been poured over me, the sensation of nerve zaps and thousands of tiny bugs crawling over my skin.” The list was endless… oozing, a “deep-bone itch”, burning and constant oozing. Ward said she took two baths and four applications of petroleum jelly every day to help find “a semblance of comfort”.

 

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Extreme pain

 

The withdrawal didn’t just effect Ward either. “Exactly one month into withdrawal, I was on the tube and a man came and sat down next to me, but when he turned and saw my face, he got up and walked away.” A few months later, a friend of Ward’s mother saw her for the first time… “…he said it looked like I had been burnt in a fire and he was quite upset”.

It took a long time until Ward started to see improvements. In the first year her back and legs made a full recovery but other areas including her arms and neck gradually got worse. “I also started sweating so excessively that I was limited by what I could do.” It is believed by the topical steroid community that sweating is a sign of healing however this has not been officially confirmed.

In month 27, Ward made a “sudden” overall recovery. Looking back at her withdrawal she said she couldn’t believe what she went through. “I am so glad I stuck with it but it amazes me what the body is able to withstand and what you can get through.”

 

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Her wrists are completely clear

 

When looking at when she first developed eczema Ward said she wished someone would have suggested meditation to her. “All I was told was that my eczema was incurable and my only option was various drugs.” Fully in belief that steroids don’t have their place in eczema, Ward contemplates the idea of a quick fix: “…all [steroids] do is mask the real problems that need to be dealt with.

Now almost four years since withdrawing, Ward keeps up with her blog, cara-pace.com, where she talks about her experience with her withdrawal and interviews those who are currently going through or have gone through similar situations. “When I made a sudden recovery, I was so totally over the moon that I wanted others to know that there is a light at the end of the tunnel. I’m very passionate about spreading awareness.”

 

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Looking beautiful

 

 

Fleur Rose Blanche, 10, London, UK as told by her mother Lorraine Blanche, 46, beauty therapist

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Fleur Rose Blanche was six years old when she started developing eczema. Lorraine Blanche, her mother, a beauty therapist, told me about her journey through steroid withdrawal.

“It was a snap decision to stop once I discovered Red Skin Syndrome on the internet. All the sufferers looked just like her with exactly the same symptoms,” she says.

Using a small tube of 1% hydrocortisone every two weeks for three to four years since developing eczema it was around age nine that the potency had to be upped in order to help calm Fleur’s eczema. However, her skin continued to worsen.

“I noticed it was spreading to her back, chest, arms and legs. Her skin kept worsening and allergies started happening. Angry red rashes were spreading all over and her lips kept swelling and itching.”

Last November, Lorraine said she’d put Fleur to bed and decided to google “redness in skin.” Once she discovered the ITSAN website, she immediately stopped applying steroids that day. “It all dawned on me what was happening and it all made sense.” Despite knowing what she had to do, Lorraine admits she was terrified of the withdrawal stage.

 

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Just two days into withdrawal – flaring

 

From shredding to oozing, Lorraine told me about the restless nights that occurred soon after Christmas. “She was so scared and crying,” she recalls. Bright red, and itchy from head to toe, Lorraine said she was unsure whether to keep going through the withdrawal.

 

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Fleur – “Horrible and scary”

 

When she was at her worst Lorraine turned to The Red Skin Syndrome Support Group on Facebook. “I got a lot of encouragement that I was doing the right thing.” It was a couple of weeks after that Fleur started to turn a corner.

As of the past few months her skin has made a rapid improvement. Now with just a rash on her joints including ankles, inner elbows and wrists, Lorraine said Fleur is around 95% healed. “She still won’t swim or bathe as water stings her but apart from that she’s leading a normal life again.”

 

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Fleur today

 

Lorraine said her experience with doctors and dermatologists has been a complete waste of time. “They just want to keep giving steroids even after I explained her addiction to it.”

Calling the whole ordeal exhausting, Lorraine said Fleur has been extremely brave throughout the last six months. Calling the withdrawal “horrible and scary”, Fleur is extremely happy to have seen improvement. Lorraine told me she feels “guilt-ridden” for using topical steroids in the first place, however is doing all she can to help warn other parents about the dangers of topical steroids despite being accused of being “steroid-phobic”.

 

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“I explained her addiction to it”

 

Now turning to traditional remedies, Lorraine said Chinese herbs have addressed Fleur’s immune system, rebalancing it and reducing inflammation. She is also treating Fleur’s gut with charcoal tablets and turmeric tablets from the homeopath.

Despite doubting her decision at times, Lorraine said taking Fleur off steroids was the best decision she had ever made. She’s adamant if it wasn’t for the withdrawal, Fleur’s skin would have never improved.

 

Sophie Carabetta, 16, from Sydney, Australia

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“I have never had past experience with eczema nor had I applied steroid before the rash appeared,” said Carabetta, currently in her final year at school. She told COSMO how before September last year she had never applied steroids.

But that month, an eczematic rash started to appear on her face. “At first, it just looked like extremely dry skin around the problem areas,” Carabetta said. When she noticed her eczema worsening, she visited a beautician. Two months later, she went to see a dermatologist, who gave her topical corticosteroids and told her to apply them to her face, including her eyelids.

According to Professor Catherine Smith, “the use of corticosteroids on the face, and particularly around the eyes, should be the minimal required control the condition.”However, ITSAN warns the absorption rates of the eyelids and face are extremely high in comparison to that of the forearms or legs.

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Within the space of three months, Carabetta’s face and neck started to flare as her eczema appeared to be spreading. “I was beginning to get extremely frustrated because I didn’t know what was wrong with my skin and no one could tell me.”

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Her mum, who is currently going through steroid withdrawal after 40 years of steroid usage, realized after much deliberation that in fact her daughter’s skin was already addicted to the steroid creams, thus the skin was flaring.

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In January of this year, Carabetta decided to stop applying the steroid creams. Six months in and her skin is still healing. “From only small areas on my face, it is now my entire face that is a problem.” Now covering her whole neck and chest area, Carabetta suffers from extreme itching and flaking.

Karen Patterson, 49, receptionist at Colchester walk-in centre

Karen Patterson, 49, a receptionist at Colchester general walk-in centre told COSMO her son, 19, went through Topical Steroid Withdrawal early last year. “At first I didn’t believe steroid addiction was possible. He was googling his symptoms constantly and obsessing over his skin.” However, after seeing improvement after her son quit steroids, Patterson came around. “Now, I understand how dangerous the pharmaceutical industry can be. He was slathering himself in steroids for two years and nothing was improving his skin. Now, he has almost completely healed.”

 

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Colchester walk-in centre

 

Patterson said she often sees parents, particularly with young children who have severe eczema, come into the walk-in centre wanting a steroid cream prescription. “They come in looking like little lobsters and the parents are practically at their wits’ end. I want to tell them about the withdrawal but I’m not allowed to.” According to Patterson, she is prohibited from giving any advice because she’s not medically trained.

“I’ve spoken to the nurses about it briefly and they’ve told me they’ve heard of steroid addiction but have not looked into it themselves.” Patterson believes more doctors and nurses need to become more aware of it to see any sort of improvement in the rise of eczema patients attending the walk-in. “With what I’ve seen and viewed of steroids, I believe most of the severe eczema cases is steroid addicted skin.”

 LISA VINCENT, 49, works in the leisure sector, lives in North Devon

Last year, Lisa Vincent, a 49-year-old mother of one, set up a petition on Change.org, a site were general members of the public are able to start petitions in hope of receiving recognition from the government. The petition called for a recognition of Topical Steroid Addiction by dermatologists and is currently at almost 1,700 supporters.

 

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Vincent’s change.org petition

 

“I started the petition as my experience with dermatologists was unsatisfactory,” Vincent, whose 16-year-old daughter is now 16 months into Topical Steroid Withdrawal, told me about her frustrations trying to explain how steroids were harming her daughter rather than helping her. “The dermatologist told us ITSAN was just a silly website and that steroid addiction doesn’t exist. They called the condition “poorly-managed eczema” and wanted her to take 30 milligrams of oral steroids for two weeks.”

After refusing to take their suggestion, Vincent said she was advised by her local counsellor to make an official complaint against the dermatology department. “I did this through the complaints commission and now the dermatology department and now blaming my GP for the unchecked repeat prescriptions for the past  five years.”

Her daughter Phoebe is doing much better since withdrawing from steroids but still struggling with face and hand flares. “I do believe that a large percentage of severe eczema cases are Topical Steroid Addiction – in fact a nurse from NHS direct told me that she has seen many cases like this… the issue is continual use of steroids.”

Vincent voiced her worries, calling the steroid pushing “brainwashing”. “It seems that big pharmacies are responsible for the dermatologist seminars and post-graduate training. The experts are the only ones unaware or in denial.” But she said she’s not surprised – it’s capitalism, right?

COSMO visits Guys Hospital for a Public and Patient Involvement Group Meeting: ‘What’s new in eczema’

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What’s new in eczema? That’s what everyone wants to know. How is there still no cure for something as simple as an itch? COSMO attended the PPI group meeting last month at Guys Hospital to discover what new research and trials are being done to combat the itch once and for all.

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Run by Professor of Dermatology and Therapeutics Catherine Smith, the hour-long meeting was delivered by Consultant dermatologist Tim Pink, and his presentation on up-and-coming trials had us all itching for more. According to Pink, the body of an eczema patient is “a perfect storm of problems” including skin barrier problems and immune dysregulation.

So how do we combat skin barrier problems and immune dysregulation? According to Pink, Dupilumab, an antibody currently undergoing patient trials, is the “revolution” in eczema. With 70-75% improvement in patients, Dupilumab is potentially going to be available in early 2018 in the UK. Tested against placebos, the success rate has been tremendous – with those suffering with virtually non-existent eczema in the space of two weeks.

With 19 other drugs in the pipeline, Dupilumab is the first to reach the end of the process.

COSMO asked Pink about the side effects of Dupilumab and the possibility of addiction. He ignored the addiction question and said side effects were a possibility.

After the event, COSMO emailed the clinical trial manager, Rosemary Wilson, for  more information on steroid addiction however Wilson said, “This is not an area of our current research.”

Hannah Ng, 22, from London, has been in the process of withdrawing from steroids three years. She attended the PPI session in hopes of finding more about the side effects of the new drug. “Although there were a lot of positive responses, the entire dermatology industry is hugely flawed and I feel disheartened that eczema has been around for so long yet so little progress has been made to treat it,” she said.

Dr Rapaport, however, has described in his blog that the Dupilumab is that of a “horror movie”. He recounts his diagnosis, management and cure of “over 4,000 corticosteroid addicted atopic dermatisis patients,” and argues other patients are in a “retro-medieval setting,” where practitioners combine all modes of potions and lotions in what he calls “drug company cauldrons.” Understandably, Rapaport’s work throughout the last four decades has been astounding but it’s clear, with his experience in the dermatologic industry, “no one gets better.” In his YouTube video, a Q&A about steroid withdrawal Rapaport says that some of his patients do go back to using steroids after withdrawing but only using adequate amounts.

 

An interview with Dr Aaron, Dermatologist

draaron

COSMO spoke to renowned dermatologist Dr Richard Aron, who’s severe eczema treatment has been praised by parents around the world. His “Aron regime” which uses diluted steroids mixed with moisturizers has allowed those suffering from severe eczema, particularly children, to find relief.

His belief is that the cause of inflammation in atopic eczema is due to a bacterial infection and not, like those of the Red Skin Syndrome community believe, an addiction to steroids. He believes the entire concept of topical steroid withdrawal is “flawed.” “It has become a label for a process where inappropriate use of corticosteroids results in the treatment being stopped prematurely with a predictable rebound of the eczema”

Aron, who has treated thousands of patients via a tapering down technique, using weaker steroids along the process, said: “I do not believe that Topical Steroid Addiction exists. It is a term which is used in patients where inappropriate use of steroids results in failed treatment.”

“Inappropriate and inadequate treatment of eczema causes profound suffering”. To relieve this suffering Aron notes that the National Institute of clinical excellence (NICE) guidelines must be significantly changed as they are “deepy flawed”. He also notes that dermatologists and other physicians who treat eczema should “acknowledge that the treatment they offer is not fit for purpose.” However, he noted the possibility of making these changes anytime soon is “remote.”

Cara on Dr Aron: “I have yet to see anyone suffering from RSS make a full recovery while using Dr Aron’s treatment and all those patients that praise it appear to still be using topical steroids, which defeats the whole purpose of using his treatment in the first place.

Briana on Dr Aron: “From my research, if you have a bacterial infection, you shouldn’t be putting steroids on it. I understand it’s diluted but because of the potential of developing Red Skin Syndrome, I advocate against using topical steroids for chronic periods of time.”

Lorraine on Dr Aron: “Horror. The thought of putting a steroid mixture on my child every day for years is madness. It’s only disguising the symptoms and not dealing with the cause.”

 

SO WHAT NEXT?

Despite Aron’s comments, us at COSMO are whole heartedly convinced topical steroid addiction exists. However, proving this to an entire generation is physically impossible without your help. You’ve read the stories, you’ve seen the pictures and you’ve seen the improvement – without withdrawing these girls would undeniably still be suffering.

Without spreading the word, those will continue to suffer and will be prescribed more corticosteroids by dermatologists unknowing to the dangers they can potentially cause.

If you believe you or a loved one is suffering from Topical Steroid Addiction, please visit ITSAN for more advice.

Love from a TSW survivor xo

Amara Howe

 

 

 

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