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TSW Atlas: An Overview of TSW
FAQ
The information in this FAQ has been gathered from the testimonies of thousands of patients all across the globe. As this condition is not yet recognised so much of the information is anecdotal and subjective. There is a lot that we do not currently understand about TSW since it has not yet been adequately researched – this is what Scratch That is working to change.
Topical steroids are a medication found in cream or ointment form that are prescribed to reduce inflammation and irritation when applied directly to the skin. They come in different strengths (potencies) – mild, moderate, potent and very potent. Only very mild topical steroids, such as hydrocortisone, can be bought over the counter. Find out more here
Eczema, Atopic Dermatitis, Psoriasis, nappy rash, and many other kinds of skin rashes and irritation.
Also known as ‘Red Skin Syndrome’, a small number of people who use topical steroids develop an addiction. This happens when the body builds a tolerance to topical steroid medication and the patient finds they have to use a higher and higher potency of steroid to have the same effect. TSA is not like a normal addiction; there is no compulsion to use the medication. Rather, ‘addiction’ refers to dependency that a person’s body builds up to the medication unknowingly. When the patient stops using the steroid, their skin ‘rebounds’ and their original symptoms get worse.
- Rash develops quickly between steroid applications (rebound effect)
- Spreading rash develops in new areas on the skin
- Itching, burning, stinging sensation
- Failure to clear with the usual potency of steroid, requiring higher potencies which have decreasing effects
- Increased allergic response to environmental irritants and food (hypersensitivity)
This is defined as the eruption of symptoms once the medication is discontinued – symptoms which are usually controlled whilst still on the medication. This is a word often used by doctors.
This refers to the set of symptoms that occur when a patient who is dependent on steroids discontinues their use. Find out more here
MOST COMMON:
- Red, inflamed skin (can develop into ‘erythroderma’ – redness and inflammation over 90% of the skin surface)
- Burning, tingling, stinging skin
- Red sleeves on lighter skin (redness extends down arms but stops sharply at the palms – also occurs on legs)
- Hyperpigmentation on darker skin
- Skin thickening
- Increased temperature of the skin surface
- Extensive and excessive shedding of skin flakes over large areas of the body
- Oozing serous fluid/ exudate (clear or yellow lymphatic fluid)
- Skin cycling (the skin moves quickly through phases of redness, burning, oozing, swelling, dryness and then shedding)
- Hypersensitivity of the skin to water, temperature changes, moisturiser, sweating, movement, fabrics etc.
- Enlarged and swollen lymph nodes
OTHER SYMPTOMS:
- Oedema (swelling) – more often occurs in the legs and arms
- Scarring on darker skin
- Nerve pain – also known as ‘zingers’ in the skin
- Difficulty controlling body temperature – thermoregulation (due to reduced functioning of the adrenal gland)
- Shaking and shivering
- Difficulty sleeping at night due to discomfort
- Difficulty sleeping in early hours but can sleep in the day (caused by under-active adrenal gland)
- Eye dryness/irritation
- Increased hair loss (on the head and/or the body)
- Telogen effluvium (stress/ illness induced hair loss up to six months after initial trauma caused by disruption of the hair cycle)
- Change in appetite – many sufferers report feeling hungrier
- Weight loss
- Skin infections
- Eczema herpticum
- Paronychia (skin infection caused by bacteria getting under the nail bed – caused by scratching)
- Onycholysis (separation of nail from nail bed)
- Fatigue
- Depression, anxiety and other mental health problems
- Problems with hormones – period can stop or become erratic
Unfortunately there is very little research into this condition so we cannot say for sure whether or not tapering is effective in reducing the symptoms of TSW. The majority of the TSW community claim to have tried tapering, only to find it puts off the withdrawal which still occurs when the steroids are finally ceased.
Many of the people suffering from this condition have Atopic Dermatitis (chronic eczema), however many have never had eczema and have used topical steroids for other problems. Even caregivers who apply the topical steroids to another’s skin can become addicted. It has been observed that more women develop a dependency than men, although the reason for this is unclear. Find out more here
The general consensus seems to be that patients become steroid addicted when they are prescribed too many topical steroids and are not given proper instructions on how to use them. It has also been reported time and time again that patients are encouraged to use steroids far too much and in very sensitive places (like the face) by their GPs. This means even patients who carefully follow their doctor’s advice regarding steroid usage could still end up addicted.
There are no tests to determine if a patient is steroid addicted, however you can check your symptoms against the above lists and decide for yourself. Some very sure signs are usually an increasing dependence on higher and higher potencies of steroids and ‘red sleeves’ – where your skin is red all down your arms but the redness stops abruptly at the palms.
Topical Steroid Addiction often presents itself in a very similar way to eczema making it hard to diagnose. Symptoms we believe differ from eczema (or Atopic Dermatitis) include ‘red sleeves’, burning skin and redness spreading to places it’s never been before. We believe the symptoms of Topical Steroid Withdrawal, however, are very different to eczema.
TSW presents the same symptoms with darker skin, but these can look slightly different. Hyperpigmentation is common, causing the skin to become darker than its normal tone, as is skin thickening. This usually fades with healing. TSW can also cause the skin to scar in rarer cases.
The short answer? Yes! Topical Steroid Withdrawal is a long and painful experience for the majority of the sufferers who have to endure this condition. However most patients make an incredible recovery whereby their skin returns to how it was before it became steroid addicted (to just eczema) or they end up with no skin condition at all. There are no guarantees with this process, but the overall prognosis is very positive.
Most patients recover within 1-5 years. The average recovery time is 1-2 years, with the worst symptoms often displaying themselves about 3-4 months into the process (while the steroids are leaving the system). However everyone is different and many patients report having suffered different timelines, with some recovering is just six months, to some who still suffer 8+ years down the line (we don’t want to scare you, this is very rare!).
No. Topical steroids do not cause addiction in everyone, only a small proportion of TS users develop TSW. At this moment in time we do not know how large the proportion is, however in one study it was suggested that up to 12% of users develop some level of addiction. It is not yet known why some people develop a dependency while others do not.
Yes absolutely. We always encourage patients to maintain supportive and positive relationships with their doctor as their support is vital if you believe you have TSA.
Most doctors have never heard of TSA or TSW so this is your chance to educate them on it! If a doctor is dismissive of the condition, and this is very common, there are other ways you can help them to understand. They may not be fully in support of TSW, but if they are a good doctor they should be supportive of your decision to stop a medication which you believe is no longer working for you. See our ‘talking to your doctor’ page for more support. Find out more here
Because this condition is not yet diagnosed in the UK, there are currently no treatments recommended by the NHS. However this condition has been around for decades and there are certain therapies out there that can help. Every patient is different, and what helps one may not help the other. The general consensus is the best way to recover is to listen to your skin and do anything you think will make you feel more comfortable. Don’t let anyone pressure you or make you feel guilty for doing or not doing any treatments. You know you skin better than anyone else. Find out more here
The girls who started Scratch That are all big advocates for the ‘No Moisture Treatment’ method. Tried, tested and found to be successful by many patients, the therapy involves leaving the skin alone to dry out and heal by itself without moisturiser or bathing. It was developed by a Japanese doctor called Dr Kenji Sato who runs a TSW recovery clinic in Japan. Please see the ‘NMT’ section for more information.
There are quite a few small scale studies. Unfortunately none are thorough or large scale enough to turn dermatologist’s heads yet. Our goal is to fund proper research into this condition as soon as possible.
Because unfortunately this condition is not yet diagnosed or recognised by the NHS.
This condition has existed ever since the introduction of topical steroids in the 1970’s.
Misconceptions
Since TSW is not a condition which is currently diagnosed, it is very poorly understood. Sometimes people get things wrong about our condition. Read some of the most common misconceptions below.
“TSW is an extremely rare condition.”
TSW is often dismissed as being ‘rare’ as a way of dismissing the need to properly address the condition.
However the European Commission on Public Health defines rare diseases as “life-threatening or chronically debilitating diseases which are of such low prevalence that special combined efforts are needed to address them“.
The term low prevalence is later defined as generally meaning fewer than 1 in 2,000 people. That could mean thousands of people in the UK are suffering from TSW and are not receiving any medical support.
As a community we know of hundreds of people who are currently going through or have gone through TSW in the UK alone. One Facebook support group has over 13,000 members worldwide. In a Japanese study of atopic dermatitis, 12% had poorly controlled skin disease and this group would include topical steroid-addicted patients. 10% of the UK adult population has Atopic Dermatitis.
“TSW only occurs after prolonged overuse.”
Many people within the community report that they have developed some level of dependency and subsequent withdrawal after only a few months, and even weeks of topical steroid use.
It appears that some patients have more trouble metabolising corticosteroids than others and are therefore more likely to develop TSW.
Furthermore, TSW has been reported to be more likely to occur in females who blush easily, further supporting this theory.
“TSW is the patient’s fault for misusing steroids.”
TSW patients are far too often blamed for their own condition. We strongly believe that the reason we have developed a drug dependency is not our fault. This is a dangerous idea to be spreading as it is tantamount to victim-blaming and damages doctor/patient relationships.
Topical steroids would not be being misused in the first place if:
- Proper instruction on how to use TS was given with every prescription, especially for those with a long term, recurring skin condition.
- Appropriate warnings regarding side effects of the potential to develop a dependency on these drugs was given to chronic skin condition sufferers.
- Patients who don’t respond well to topical steroid therapy were quickly identified and given other options.
- Patients were informed clearly about when to stop TS use and were regularly reminded about the dangers of using them for more than 2 weeks.
“It takes around 3 months for patients to recover from TSW.”
It is important to state that the withdrawal process and recovery takes a LOT longer than 3 months.
Granted, it takes about 3-4 months for steroids to leave the system. However on average it takes 2-5 years to recover from TSW. Sometimes the worst of the symptoms don’t occur for 6 months or longer.
Recovery times vary widely between patients, and healing is not linear. Symptoms often then recur in cycles for years at a time before a patient fully recovers. These cycles happen over and over again, often for years after the initial withdrawal and worst flare.
In rare cases, some patients find they are still suffering 7+ years down the line.
Even though as a community we know how difficult it can be to differentiate TSW from severe eczema, most patients know that they are still suffering from ‘aftershocks’ of the withdrawal as symptoms such as oozing and extreme shedding are so different to their original skin condition pre-withdrawal.
“Side effects of topical steroids are not that serious.”
When side-effects of topical steroids are discussed, ‘skin thinning’ is one that is too often focused on. This is the only side effect, if any, that patients are currently being warned about.
Even though dependency on steroids is a relatively rare side effect, patients should be told about the risk of an addiction developing with long term use.
TSW is a serious side effect; it is the whole skin as an organ going into crisis with symptoms such as burning, stinging, extreme shedding and oozing.
As a community we wish we had been warned about the potential drug dependency topical steroids can cause as it is extremely important patients know this so they can make informed choices.
“If topical steroids are used appropriately, they are safe.”
Many people in the TSW community would disagree that the way topical steroids are currently prescribed is safe.
As long as TSW is not considered to be a side effect, or even an effect at all of the prolonged us of topical steroids, they will continue to be prescribed at inappropriately high doses.
We believe they are regularly being over-prescribed and patients are not being given sufficient instruction on how to use the steroids, how much to use or when to stop.
TS usage is not monitored carefully enough, possibly because the idea that they can cause systemic problems is not widely recognised and therefore they are deemed safer than they actually are.
TS are far too quickly prescribed for chronic, long term skin conditions such as Atopic Dermatitis, despite TS being widely recognised as a short term solution to be used for no longer than 2 weeks.
Furthermore it has been reported many times by TSW sufferers that GPs and dermatologists are recommending moderate and potent steroids be used on areas of thinner skin with high absorption rates such as the face, eyelid area and groin.
“TSW is exaggerated on social media.”
It is often stated that TSW is overemphasised on social media platforms such as Instagram, and also in the tabloids.
Firstly, we understand that not all cases of red skin are TSW, but since there is currently no diagnosis, there are bound to be patients who incorrectly self-diagnose.
Secondly, the reason you see articles and people talking about TSW more and more online is because as a community we are trying to raise awareness. Yes it may be a rare condition, but it deserves diagnosis and treatment just like any other and so we are shouting to be heard.
Unfortunately doctors often dismiss us when we try to talk to them about TSW, so the only place we have to go is the internet for support.
Finally, TSW is not being exaggerated because the symptoms are just as bad as they appear, and often they are worse. It is hard to put into words just how torturous this condition can really be.
TSW severely reduces the patient’s quality of life, often leading to job losses, depression, ptsd, and in some cases suicide. Photos of the condition are often shared by the media because the symptoms are so visually shocking. The fact is, this condition is shocking. The symptoms are truly hideous, and the most painful thing about the condition is that it is preventable.
The Science
Despite the fact that TSW is not considered to be a well researched condition, there are a number of scientific studies that have been conducted over the years.
For Doctors
Currently the most in-depth resource for doctors and dermatologists can be found on ITSAN website: