What is Topical Steroid Withdrawal?
Corticosteroid creams are prescribed by doctors worldwide to treat skin conditions such as eczema and atopic dermatitis. Topical Steroid Withdrawal is a severe health condition caused by an adverse reaction extended use of the steroid creams.
Topical Steroid withdrawal, can be described as a series of symptoms associated with the gradual or abrupt cessation of prolonged topical corticosteroid use. It is described as a syndrome. This means it is an umbrella term for a group of associated diseases. It is often used interchangeably with the terms ‘Topical Steroid Addiction (TSA)’ and ‘Red Skin Syndrome (RSS)’.
Topical Steroid Addiction can be described as the increased tolerance of the body to higher doses of topical corticosteroids and the onset of adverse effects upon cessation. These adverse effects are often much worse than the initial condition (such as eczema and acne) the steroids were being used to treat.
Red Skin Syndrome is also known as Red Burning Skin Syndrome. It refers to an inflammation of the skin, characterized by redness on lighter skin tones, and a stinging or burning sensation. It is caused by the cessation of prolonged use of topical corticosteroids and occurs when the blood capillaries in the skin are dilated as a result.
Other names for Topical Steroid Withdrawal
While TSA and RSS are the most common, topical steroid withdrawal can be used interchangeably with other names. These names have specific indications for their use. These names include:
- Topical Steroid Withdrawal Syndrome
- Steroid Addiction
- Corticosteroid Addiction
- Topical Corticosteroid Addiction (TCS Addiction)
- Steroid Addiction Syndrome
- Topical Corticosteroid Withdrawal (TCS Withdrawal)
- Topical Corticosteroid Withdrawal Syndrome (TCS Withdrawal Syndrome)
- Topical Steroid Damaged Facies (TSDF)
- Red Burning Skin Syndrome
- TSW Skin
- Steroid Dermatitis
- Steroid-Induced Dermatitis (SID)
- Steroid Dermatitis Resembling Rosacea
- Steroid- Induced Rosacea-like Dermatitis (SIRD)
- Steroid-induced Rosacea-like Eruption
- Topical Corticosteroid-Induced Rosacea-like Dermatitis (TCIRD)
Aetiology of TSW
People often use topical steroids to treat skin conditions. A common example of a skin condition that is indicated in the use of topical steroids is atopic dermatitis and eczema. People who use topical steroids to treat atopic dermatitis are most at risk of developing topical steroid withdrawal.
To cause the side effects of topical steroid withdrawal, there are three conditions. The first is that the use of topical steroids would have to uncontrolled and commonly prolonged, for 6 months or longer. However, as more data emerges, it is not common to see topical steroid withdrawal form in patients who have only used topical steroids for less than 1 month. In children, the time can be as short as two months. The second is that the use of topical steroids would have to be frequent. This means it would have to be used daily or more frequently. The last condition is that the use of topical steroids has to be excessive or inappropriate. The correct use of topical steroids does not cause topical steroid addiction or withdrawal. These three conditions build up to use and upon withdrawal, can cause worse side effects than the initial condition.
Further research is also required to determine if topical steroid withdrawal is linked to Tachyphylaxis.
Types of Topical Steroid Withdrawal
There are two types of topical steroid withdrawal. They are classified based on the underlying skin conditions that topical steroids are used to treat.
1. Erythematoedematous
This type of topical steroid withdrawal develops in patients who have used topical steroids to treat atopic dermatitis, eczema, and other related conditions. It is often characterized by red, burning or stinging, swelling, and hypersensitivity of the skin to its normal environment. This type is associated with the Red Skin Syndrome and is the more common presentation of topical steroid withdrawal.
2. Papulopustular
The papulopustular type of topical steroidal withdrawal develops in patients who have used the topical steroid to treat acne and acne-like conditions. Topical steroids are not recommended for acne. It may have similar symptoms to the erythematoedematous type. It has the added features of pustules, papules, nodules, and other types of pimples.
Signs and Symptoms
Topical Steroid Withdrawal is one of many potential side effects of topical steroids. The most common symptom of topical steroid withdrawal is a rebound of the underlying skin disease, followed by redness and an associated burning or stinging sensation. It can be difficult to determine if the rebound of the underlying skin disease means the patient requires different treatment to it is a case of topical steroid withdrawal.
There are certain things to look out for to determine if it is a case of topical steroid withdrawal:
- The patient experiences burning or stinging sensation rather than itching
- Rebound is worse than the original presentation of skin disease
- Symptoms extend further than the area of initial treatment and are different from the original presentation of skin disease
- Sites of visible inflammation (i.e. redness, darkening of the skin, or other change in color like pink or purple depending on the skin tone) are coalescent with the rest of the skin, not patchy.
- There has been a prolonged, frequent use of topical steroids.
Other symptoms of topical steroid withdrawal include:
- Altered thermoregulation. The patient complains of feeling too cold or hot.
- Changes in appetite
- Chills
- Depression and Anxiety
- Dryness and irritation of the eye
- Edema
- Fatigue
- Hair loss, both on the head and the body
- Hard bumps beneath the skin
- Hives
- Hot skin
- Insomnia
- Lymph node enlargement
- Pus filled bumps beneath the skin
- Pus secretion from blisters caused by eczema (skin weeping/oozing)
- Red flushed face
- Red sleeves. There is redness of the arms and legs, excluding the palms and soles of the feet.
- Scabs
- Skin alternates between redness, swelling, skin flaking, and secreting pus
- Skin atrophy and thinning
- Skin flaking
- Skin hypersensitivity to water, fabric, movement, creams, temperature, etc.
- Skin peeling
- Vision impairment, light sensitivity
- Zaps of stabbing, squeezing, cold or prickly pain known as zingers
The list of the above can often present itself as mild topical steroid withdrawal symptoms, to begin with. Prolonged use and misuse of topical steroids can further exacerbate the symptoms to a more severe state when the patient discontinues the application of the steroid creams. The taper method, which involves the slow gradual decrease of the use of topical steroids is a common method used however there is scarce data on the efficacy of this method. During the taper method, mild symptoms can frequently appear but are often not as severe as quitting topical steroids cold turkey.
The challenge with quitting topical steroids cold turkey vs the taper method is that both require an extended duration of time and information is scarce on which method is the most effective. Within the community, there has been anecdotal evidence of the efficacy of both.
Stages of Topical Steroid Withdrawal
On cessation of topical steroid use, the first symptom that can be noticed is the redness of the skin. This usually starts on the site of steroid treatment which is usually the face or the genital area. It can extend beyond these areas.
As the redness occurs, the skin can feel thick early on. Later, swellings may occur. Patients usually experience a burning or stinging sensation rather than an itch. However, itchiness might occur as the skin transitions from the redness phase of the syndrome to the dry scaly phase.
The skin undergoes desquamation as the redness fades. This phase is also known as the desquamative phase.
At this stage, patients can experience hypersensitivity of the skin to water, environmental factors, moisturisers, etc.
Read more about the healing stages of topical steroid withdrawal.
Sites of Topical Steroid Withdrawal
Symptoms of topical steroid withdrawal start on the sites of topical steroid use, generally the face and arms. In many cases, symptoms of topical steroid withdrawal often extend beyond the sites of topical steroid use. For instance, symptoms of topical steroid withdrawal that start on the face might eventually spread to the neck and so on.
Prevention
The most effective way to prevent Topical Steroid Withdrawal is by awareness. Patients and healthcare professionals need to be aware of the risks involved with using topical steroids over a prolonged period (more than one year), frequently (more than once daily), and in higher doses. The longer and the more frequently a person uses higher doses of a topical steroid, the more likely they are to experience symptoms of topical steroid withdrawal when they stop.
However, the use of topical steroids cannot be outlawed because when used correctly they have immense and proven benefits for diseases such as atopic dermatitis and eczema.
Patients who need long-term management could use topical steroids intermittently while supplementing with non-steroidal treatment options. This will go a long way in reducing tolerance levels of the skin to topical steroids and in turn reducing the incidence of topical steroid withdrawal.
Where this is not possible, adhering strictly to the dosage, frequency, and duration of use prescribed by a licensed medical professional is the recommended option. It is important to note that many people within the TSW community still developed topical steroid withdrawal when they followed the ‘safe’ recommended protocol dosage and frequency.
Complications
Complications of topical steroid withdrawal have both a physical and psychological impact. Topical steroidal withdrawal typically affects the sites of topical steroidal use. One of the most common sites of topical steroid use is the face. Redness, pus, scaling of the skin are cosmetically present. They can cause the patient to feel isolated and embarrassed, with little desire to go out of their homes. These are feelings that can quickly descend into depression, anxiety, and crippling mental health concerns experienced by a large majority of TSW sufferers. Other things that can add to this burden are the intensity of the burning sensation and the difficulty of treatment. Other complications include:
- Lack of sleep
- Associated infections
- Social Anxiety
- Body dysmorphia
- Inability to thermo-regulate
- Environmental allergy to chemicals in shampoos, soaps, laundry detergents etc
Diagnosis
As of the time of this publication, there is a scarcity of laboratory tests that can help with the confirmatory diagnosis of topical steroid withdrawal. There are also no standardized diagnostic criteria at this time. Symptoms vary from person to person, but the most common symptom is the red, inflamed skin associated with a burning or stinging sensation after stopping long-term, frequent, and inordinate topical steroid use. It is similar to an atopic dermatitis rebound and it can be difficult to tell the two apart. The diagnosis of topical steroid withdrawal is solely based on your medical history.
A diagnosis of topical steroid withdrawal can be made if:
- The use of topical steroids has been prolonged for up to or more than t6 months
- The use of topical steroids has been consistent and frequent, more than once a day every day.
- The patient has been using high doses of topical steroids
- The patient recently stopped using a topical steroid
- The patient has rashes that burn or sting and appear in areas that were previously unaffected by the underlying skin condition
Risk Factors for TSW
Although men, women, and children can all get topical steroid withdrawal, it is more commonly seen in women. A study to examine patient demographics and outcomes found 56% of the study population to be women. Their ages ranged from 20 to 66. Women who are prone to blushing are especially at risk of topical steroid withdrawal.
There is scarce literature can be found on the incidence of topical steroid withdrawal in children. Among Facebook groups, however, there is a strong surge of parents sharing images of their babies with symptoms of topical steroid withdrawal.
People with atopic dermatitis and eczema are the population most at risk of topical steroid withdrawal. This is because topical steroids are the definitive treatment of atopic dermatitis. Depending on the severity of the condition, the use of topical steroids can be prolonged and frequent. These two conditions are common for the onset of topical steroid withdrawal. While a health professional can both adequately and inadequately recommend how these creams can be used, patients can often misuse the treatments on their own.
Topical Steroid Withdrawal Treatment
There is no definitive treatment for topical steroid withdrawal, besides stopping the use of topical steroids. Studies have not shown any significant difference between tapering off the steroids or stopping immediately. Therefore, there is discourse of whether quitting cold turkey, or tapering down, is more effective.
Upon cessation of the use of topical steroids, doctors can prescribe supportive treatments to help with the different symptoms such as pain, inflammation and redness, anxiety, sleeping disorders, control of infection, and anything that could impair the patient’s physical and emotional comfort. Types of drugs that can help with this include antihistamines, antibiotics, drugs for anxiety and sleeping disorders. None of these supportive treatments have been proven to assist in or quicken the full recovery from topical steroid withdrawal.
The time it takes for the skin to revert to its original state is based on a case-by-case basis. It could take a few months for some people, and a few years for others. There is no average time of recovery. Several cases only show that recovery time is long-term and dependent on the duration and strength of the topical steroid used.
Our mission here at TSW Assist is to provide those who are suffering from topical steroid withdrawal, with routines, products, supplements, and therapies that can help manage and reduce the inflammation, pain, and suffering of the withdrawal period. These solutions are recommended directly from other people with TSW who have had success in mitigating their suffering during topical steroid withdrawal.
Conclusion
Topical Steroid Withdrawal is a rare disorder that is caused by cessation of the prolonged, frequent and inordinate use of topical steroids that have usually been used to treat an underlying skin condition. The most common symptoms are redness, burning, and swelling of the skin and can significantly increase in severity, depending on the usage duration of topical steroids by the patient. Time is the biggest factor in healing, however, TSW Assist aims to provide crowd-sourced community-recommended solutions to assist with healing process, reduce inflammation and suffering.
I have topical steroid withdrawal
Complete our 2 minute questionnaire, and stay updated with the routines, treatments and therapies that are helping the TSW community.
I am a carer
Seeing a loved one go through topical steroid withdrawal can be heartbreaking. Join our subscriber list to stay updated on solutions we share with the community.