Information2021-02-23T22:43:08+01:00

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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 what Scratch That is working to change.

What are topical steroids?2020-11-15T13:26:39+01:00

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

What conditions are topical steroids used for?2020-11-15T13:15:12+01:00

Eczema, Atopic Dermatitis, Psoriasis, nappy rash, and many other kinds of skin rashes and irritation.

What is Topical Steroid Addiction (TSA)?2020-11-15T13:15:03+01:00

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.

What are the symptoms of TSA?2020-11-15T13:14:57+01:00
  • 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)
What is the rebound effect?2020-11-15T13:14:41+01:00

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.

What is Topical Steroid Withdrawal (TSW)?2020-11-15T13:33:09+01:00

This refers to the set of symptoms that occur when a patient who is dependent on steroids discontinues their use. Find out more here

What are the symptoms of TSW?2020-11-15T13:14:24+01:00

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
Does tapering work?2020-11-15T13:14:16+01:00

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.

Who is affected by Topical Steroid Addiction?2020-11-15T13:42:22+01:00

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

Why do people become addicted to steroids?2020-10-24T17:59:18+01:00

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.

How do I know if my skin is addicted?2020-10-24T17:59:15+01:00

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.

How do I know it’s not eczema?2020-10-24T17:59:11+01:00

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.

How does TSW affect darker skin?2020-10-24T17:59:05+01:00

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.

Can you recover from TSW?2020-10-24T17:59:01+01:00

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.

How long does it take to recover?2020-10-24T17:58:56+01:00

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!).

Does everyone who uses topical steroids get TSW?2020-10-24T17:58:52+01:00

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.

Should I talk to my doctor about TSW?2020-10-24T17:58:47+01:00

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.

How do I talk to my doctor about TSA and TSW?2020-11-15T13:49:13+01:00

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

Are there any treatments available?2020-11-15T13:45:48+01:00

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

What treatments would you recommend?2020-10-24T17:58:34+01:00

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.

Are there any studies on the condition?2020-11-15T13:55:02+01:00

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.

Why am I only just hearing about this?2020-10-24T17:58:26+01:00

Because unfortunately this condition is not yet diagnosed or recognised by the NHS.

How long has this condition existed?2020-10-24T17:58:19+01:00

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.

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.
Find out more

For Doctors

Currently the most in-depth resource for doctors and dermatologists can be found on ITSAN website:

ITSAN Resources
Studies

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