For Doctors – ITSAN

TSW Syndrome and Resources for Doctors

ITSAN is a member in good standing of the Coalition of Skin Diseases and an affiliate cited in the Patient Advocate Resource Center of the American Academy of Dermatology. See the About ITSAN tab for more information on our professional affiliations.

This page is a resource for Healthcare Providers seeking answers from the experts about Topical Steroid Withdrawal Syndrome – also known as Topical Steroid Addiction and Red Skin Syndrome.

Please read “Topical Steroid Withdrawal Syndrome – Time to Bridge the Gap” a recently published article in the British Journal of Dermatology calling for improved topical steroid prescribing guidelines and patient support.

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Press release from GOV.UK – Drug safety update on the risk of Topical Steroid Withdrawal reactions to topical steroid medication from the Medicines and Healthcare products Regulatory Agency.

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Government of Canada – Safety brief on topical corticosteroids and the risk of topical withdrawal reactions. Click here.

Please see the joint position statement on Topical Steroid Withdrawal by the National Eczema Society (United Kingdom) and British Association of Dermatologists:

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Please read this article on how to recognize TSW Syndrome, published by the National Eczema Association. Includes insight from eczema experts Dr. Lawrence Eichenfield, Dr. Eric Simpson, and Dr. Peter Lio.

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Educational videos on TSW Syndrome

Medical doctors answering the most common questions other doctors may have about this emerging diagnosis — including how to recognize, diagnose, treat and prevent TSW Syndrome.

Dr. Belinda Sheary

Questions answered in this video:

What is Topical Steroid Withdrawal (TSW)? Definitions from the literature.
What is actually happening to the skin in TSW?
How is TSW diagnosed?
Management of TSW – including mental health
Prognosis – How long do symptoms last?

Learn more: Sheary B. “Topical corticosteroid addiction and withdrawal – An overview for GPs.” Australian Family Physician 2016.June;45(6):386-388.

Dr. Peter Lio

Questions answered in this video:

What is Topical Steroid Withdrawal (TSW)?
Why is TSW difficult to diagnose?
How is TSW diagnosed?
Can TSW be prevented?
What should patients do if they believe they have TSW?
Total avoidance of all topical steroids recommended for TSW patients

Webinar: Topical Steroid Withdrawal with Dr. Peter Lio found here.

Learn more: Lio PA, Chandan N. “Topical Steroid Withdrawal in Atopic Dermatitis.” Practical Dermatology 2019.August:36-42.

Dr. Mototsugu Fukaya, et al

Questions answered in this video:

How is Steroid Addiction defined?
What are the clinical findings of Topical Steroid Addiction?
What strength of steroid and usage pattern leads to steroid addiction?
How is steroid addiction treated?

Learn more: Fukaya M, Sato K, Sato M, et al. “Topical Steroid Addiction in Atopic Dermatitis.” Drug, Healthcare and Patient Safety, 2014;6:131–138

Q&A: Answers from the literature

This information comes directly from the literature via doctors and researchers who have experience with TSW Syndrome. Additional commentary and photos with perspective from ITSAN’s worldwide TSW Syndrome community complete the clinical picture.

Q: What are other names for TSW Syndrome in the literature?

Q: How does TSWS present?

Q: How can TSWS be differentiated from severe Eczema?

Q: How does TSWS present in children?

Q: How is TSWS treated?

Q: What is the time frame for TSWS to resolve?

Q: Are TSWS patients ‘Steroid Phobic’?

Q: What is the prevalence of TSWS?

Q: How can TSWS be prevented?

Q: What are other names for TSW Syndrome in the literature?

At a glance:

Click the term below to link to an example of where each term is used within the literature:

Excerpts from the literature:

Journal of the American Academy of Dermatology, March 2015:

“Nomenclature: Using our a priori definition of TCS withdrawal, the following names listed were used to describe this entity: facial corticosteroid addictive dermatitis, red skin syndrome, topical corticosteroid induced rosacea-like dermatitis, steroid addiction syndrome, steroid withdrawal syndrome, steroid dermatitis, post-laser peel erythema, status cosmeticus, red scrotum syndrome, chronic actinic dermatitis, anal atrophoderma, chronic eczema, corticosteroid addiction, light-sensitive seborrheid, perioral dermatitis, rosacea-like dermatitis, steroid- rosacea, and steroid dermatitis resembling rosacea.” (1)

ITSAN Support Community:

Within the ITSAN Support community, the following terms are used almost exclusively: Topical Steroid Addiction (TSA), Topical Steroid Withdrawal (TSW), and Red Skin Syndrome (RSS). TSW Syndrome can occur when using topical or oral steroids for any purpose, in susceptible individuals. ITSAN has chosen to use TSW Syndrome (TSWS) as an umbrella term to describe the disease until medical consensus is reached concerning naming.

▲ Back to Questions

Q: How does TSWS present?

At a glance:

Pruritus
Oozing/weeping exudate
Erythema
Burning/stinging
Rebound eruption
Escalating dosage and frequency of application
History of corticosteroids
Scaling
Cracking

Swelling/edema
Tenderness
Nerve pain
Fatigue
Desquamation/peeling
Elevated IgE
Swollen lymph nodes
Diminished tolerance for emollients
Symptoms are long-lasting and severe

Below are pictures submitted by members of the ITSAN community to illustrate how TSW Syndrome typically presents, and eventually resolves, by total cessation of topical steroids.

Excerpts from the literature:

Journal of the American Academy of Dermatology, March 2015:

“In the erythematoedematous variant, the most commonly reported signs were erythema, scaling, papules, nodules, desquamation/peeling, and swelling/ edema. The most commonly reported symptoms were burning/stinging (94.6%), pruritus, pain, and diminished tolerance for emollients. The papulopustular variant may be distinguished from the erythematoedematous variant by the prominent features of pustules, papules, nodules, and less frequently edema and burning/stinging.” (1)

Clinics in Dermatology, May-June 2003:

“All of these patients had been treated with long-term topical corticosteroids, usually with escalating dosage and frequency of application. In the majority of patients, the initial symptom of pruritus commonly evolved into a characteristic, severe burning sensation. In many cases, systemic corticosteroids had also been administered to relieve the severe erythema and burning, but this only exacerbated the condition. . . .

The pattern of corticosteroid withdrawal was usually quite characteristic. Seven to 10 days after corticosteroids were stopped, an initial flare of erythema occurred at the site of the original dermatitis, accompanied by local spread and marked burning. This flare lasted anywhere from 7 to 14 days and culminated with exfoliation.. . .

Withdrawal symptoms, manifested by angry erythema and burning, were long-lasting and severe.” (3)

Drug, Healthcare and Patient Safety, October 2014:

“TSA [Topical Steroid Addiction] is the situation where skin develops more severe or diverse skin manifestations after the withdrawal from TCS than at preapplication. . . . Before withdrawal, the addicted skin usually looks almost normal or well-controlled by TCS. Patients often subjectively notice . . . the itching may be more uncomfortable than before . . . or the TCS do not work as well as before. . . .

After TCS withdrawal, the erythema often develops from the area of the skin where the intractable eczema remained and spreads gradually day by day. . . . This rebound eruption extends to areas of the skin where TCS have never been applied. The typical spreading course of the rebound eruption extends from the face to the neck, upper extremities, trunk, and then to the lower extremities, although there may be many variants. Sometimes, the rebound eruption spreads from only one eczematous finger to the arms, trunk, face, and lower extremities and then on to the whole body, even when there had been no other eczema on the patient and TCS had been used only on the affected finger. . . .

After the acute phase of the red exudative rebound, a dry, itchy phase follows, with thickened and desquamative skin.”(2)

Cutis, April 2009:

“Children often present with the classic perioral type as well as perinasal and periocular eruptions. . . .”

“Although it was believed that only high-potency topical steroids could produce SIRD [Steroid-induced Rosacea-like Dermatitis], it is important to note that topical hydrocortisone 1% also can cause such an eruption after prolonged use.” (11)

International Journal of Dermatology, January 1979:

“[Topical corticosteroid] Treatment continues optimistically for some weeks or months. Then, deliberately or accidentally (went on vacation without drug, forgot to refill) the skin receives no drug. Promptly, within a day or two, the treated areas become reddened, tender, itchy, cracked, scaling, and erupting into pustules, especially on the face. The original disease may exacerbate, but the key event is the rebound dermatitis which is exceedingly uncomfortable and distressing. The patient rushes to reapply the steroid and secures immediate relief. The itching, dryness, and scaling quickly abate. All is well until the next lapse when rebound dermatitis returns with greater intensity than before. The patient becomes “hooked” in order to prevent the misery producing rebound flare. . . . At this stage, stopping the steroids leads to a ferocious rebound within one or two days with fissuring, exudation, pustulation (of the face) and always with intolerable discomfort. The patient is now solidly addicted and cannot escape unless fortune furnishes a physician who recognizes the situation and specifies the one treatment the patient fears — withdrawal from the steroid (or starts the weaning process by substituting a weaker steroid).” (4)

Medical Hypotheses, May-June 2005:

“The therapy by corticosteroids influences the production of IgE, that is one of the key markers of the atopic diseases. Thus, therapy of patients with atopic dermatitis by topical corticosteroids within two weeks resulted in the elevation of spontaneous production of IgE by B-cells in vitro. The experiment has showed that corticosteroids are able to induce IgE production by B-lymphocytes when added to a culture in vitro. A synergy of IL-4 and corticosteroids in induction by B-cells of IgE production plays, probably, some role in the influence of corticosteroids on the course of atopic diseases.” (17)

ITSAN Support Community:

TSWS appears in our members without regard to area treated or topical steroid potency. Some members, especially infants and children, develop TSWS after very short periods, using low potency topical steroids on very small areas of the body. The first symptoms are usually spreading rashes and red, inflamed, itching, burning skin. Doctors have often advised treating more often, on larger areas, with a higher potency topical steroid. This exacerbates the problem as the burning, diffuse rash spreads to other areas of the body.

If topical steroid therapy is withdrawn (even for brief periods between treatments), topical steroid withdrawal symptoms emerge: burning, stinging, oozing, massive flaking, swelling, swollen lymph nodes, elevated IgE levels, etc. As topical steroid withdrawal progresses, the “syndrome” symptoms emerge: insomnia, fatigue, altered thermoregulation, appetite changes, loose skin, hair loss, endocrine symptoms, immunological symptoms, etc.

If steroid therapy is resumed, success is short-lived before leading to the same cycle of escalating symptoms. More aggressive treatment with super high potency topical steroids, oral steroids, or injected steroids lead to severe rebound upon cessation as well as withdrawal symptoms. Please see the “What is TSWS?” tab for a detailed list of TSWS symptoms before and after topical steroid withdrawal.

▲ Back to Questions

Q: How can TSWS be differentiated from severe Eczema?

At a glance:

Eczema	Topical Steroid Withdrawal Syndrome
Etiology: Spontaneous. Occasional family history of eczema.	Etiology: History of topical steroid use with progressive exacerbation of original condition
Itchy	Burning, stinging, incessant itch
Flakey	Constant, profuse shedding of skin flakes (“snowing”)
Patches	Diffuse, flushing rashes; erythema; general skin vasodilation; weeping/oozing
Patches cycle, resolve, clear, and include periods of remission post treatment with topical steroid	Rebound flares usually occur within days post topical steroid therapy, with increasing severity. Diligent topical steroid therapy becomes less effective over time with little or no period of remission.
Symptoms are skin-related: skin discomfort, sleep disruption, and self-consciousness	Symptoms constitute a syndrome in addition to skin issues: enlarged lymph nodes, edema, altered thermoregulation, hair loss, extreme fatigue, appetite changes, hypersensitivity, nerve pain.

Excerpts from the literature:

Drug, Healthcare and Patient Safety, October 2014:

“Although the appearance of the skin lesion of TSA [Topical Steroid Addiction] is generally difficult to distinguish from the original skin disease, the distribution or expansion of the lesion might be a little different. The orthodox distribution of atopic dermatitis involves the neck, knees, or elbows (flexor parts of the body); in TSA, the appearance of a skin lesion is not limited to those sites. The only areas not affected by TSA or the rebound eruption are the palms and soles. . . . However, these can also be partially affected in severe cases.” (2)

Dermatology Times, October 2012:

“When examining the patient, look at the erythematous lesions. They will have a different appearance from classic eczema. Atopic dermatitis typically has excoriated, lichenified lesions in the antecubital and popliteal areas. In contrast, patients with steroid-induced dermatitis have distant pruritic papules, nummular wet lesions and general skin vasodilation.” (5)

Journal of the American Academy of Dermatology, March 2015:

“Extrapolating from our review, a clinician should favor TCS withdrawal over a flareup of the underlying atopic dermatitis if the following features are present: (1) burning is the prominent symptom, (2) confluent erythema occurs within days to weeks of TCS discontinuation, and (3) a history of frequent, prolonged TCS use on the face or genital region.” (1)

ITSAN Support Community:

Eczema and Topical Steroid Withdrawal Syndrome are easier to differentiate if the clinician knows the history of corticosteroid use of the patient, and has close follow-up with the patient between treatments. Unlike eczema, TSWS escalates over time despite aggressive topical steroid therapy. TSWS has a distinctive presentation that is not typical of eczema, especially after ceasing topical steroid therapy. Our community reports that the skin symptoms, as well as the syndrome symptoms, are nothing like the original eczema. Many in our community did not present with eczema in the first place. Some experienced TSWS from topical steroids in cosmetics or skin products, some from being a caregiver and applying topical steroids to another person, while others experienced it without any previous skin condition after receiving oral or injected corticosteroids.

▲ Back to Questions

Q: How does TSWS present in children?

At a glance:

Presentation and treatment is similar to that of adults
The clinical picture is variable, taking an average of 1 year to clear
Pediatric community must be alerted to this avoidable and difficult problem
No large-scale studies have attempted to quantify the incidence of TSWS in children
Cases of TCS withdrawal in the pediatric population are underreported

Below are images of children from the ITSAN support group who have recovered after ceasing use of topical steroids:

Excerpts from the literature:

Journal of the American Medical Association Pediatrics (Formerly Archives of Pediatric and Adolescent Medicine), January 2000:

“We evaluated 106 (46 boys and 60 girls) who developed steroid rosacea. . . . The mean age at onset was 7.04 years (range, 6 months to 13 years). Twenty-nine children [27%] were younger than 3 years.” (14)

Journal of the American Academy of Dermatology, March 2015:

“. . . 69 (7.1%) cases were reported in patients 18 years of age and younger, of which only 0.3% were reported younger than 3 years. Burning and stinging are the most frequently reported symptoms with erythema being the most common sign. Signs and symptoms occur days to weeks after TCS discontinuation. . . . there are no data regarding the prevalence of this condition. It is also unclear whether children are actually less likely to develop this disorder or that cases of TCS withdrawal in the pediatric population are underreported.” (1)

British Journal of Dermatology, November 1972:

“Eleven children have shown similar changes on the facial skin. A bright malar flush was accompanied at times by small superficial papules, pustules and scaling. The clinical picture was variable, sometimes closely resembling rosacea and sometimes peri-oral dermatitis, taking an average of 1 year to clear. . . . Seven of the 11 children had a family history of atopy, and 2 had a family history of rosacea. Potent topical corticosteroids may have played a role in the cause of these children’s rash and, on withdrawal, there was sometimes a pustular exacerbation. . . . at least 8 were known to have been treated with potent topical corticosteroids.” (12)

Pediatrics, July 1979:

“Case reports of steroid rosacea in children are not as abundant . . . in the American Literature. The purpose of this communication is to describe four children who developed steroid rosacea following the use of topical fluorinated glucocorticosteroids and to alert the pediatric community of this avoidable and at times difficult problem.” (13)

ITSAN Support Community:

The pediatric population represents a sizable percentage of the ITSAN support group. The symptoms in children mirror the symptoms in adults, and treatment modalities are comparable. Children seem to recover more rapidly than adults — though recovery times vary. Generally speaking, children with TSW have severe withdrawal symptoms in the first 6 months and make significant progress by 12-18 months off topical steroids, with the majority returning to normal life (whether completely symptom free or not) within 24 months. TSW Syndrome is woefully underreported in the pediatric population. Prevalence is not known and is therefore assumed to be rare. However, “rare” must never be confused with “non-existent.” Prevention and/or early recognition is key.

Consider TSW Syndrome for pediatric patients whose mild eczema becomes widespread and aggressive, despite meticulous use of topical steroids, exactly as directed. Reconcile all use of over-the-counter topical corticosteroids, as well as prescriptions written by other specialists: allergists, pediatricians, dermatologists, family doctors, etc. Has the patient also used other forms of corticosteroids, especially concurrently? Side effects, including TSWS, are even more likely with a cumulative steroid load of topical steroids, nasal sprays, metered dose inhalers, nebulizers, and/or oral steroids.

For more insight into TSW Syndrome in children, please see this review: “A systematic review of topical steroid withdrawal in children diagnosed with eczema,” which analyzes data from the blogs of 26 children with TSWS. (16)

▲ Back to Questions

Q: How is TSWS treated?

At a glance:

Symptom	Treatment
Topical Steroid Withdrawal Syndrome	Total cessation of topical steroid therapy (no consensus on tapering vs “cold turkey”)
Burning	Cold compresses, tepid baths, mineral water sprays (refrigerated), wet wraps
Stinging/ Nerve pain	Oral Gabapentin, Pregabalin, pain medications
Itching/Pruritus	Oral antihistamines (Diphenhydramine, Hydroxyzine), Doxepin, Topical Pramoxine, dry wraps (gauze, eczema wear, gloves)
Oozing/weeping	Burow’s solution (Domeboro), Zinc paste, Viscopaste bandages
Infection/Inflammation	Topical/Oral antibiotics, Antivirals, Antifungals – per swab for culture and sensitivity.
Insomnia	Sleep aids, relaxation techniques
Anxiety/Depression	Anxiety medications/anti-depressants, phone calls, frequent follow-up, emotional support
Skin shedding/flaking/peeling	Emollients, dry wraps (gauze, eczema wear, gloves)
Rashes/Itching in later stages of TSWS	Narrowband UVB light therapy

Excerpts from the literature:

Journal of the American Academy of Dermatology, March 2015:

“Almost all authors recommended discontinuing the use of TCS (95.5%). The papulopustular subgroup was more frequently treated with oral antibiotics whereas the erythematoedematous variant reported the use of antihistamines, ice/cool compresses, and psychological support. . . . It is unclear if either a tapering off of TCS or immediate discontinuation has any added benefits.” (1)

Practical Dermatology, September 2015:

“For those suffering with topical steroid addiction/withdrawal, we should work to maximize all of our other non-cortisone treatments, from antihistamines to phototherapy and beyond—along with lots and lots of support—to help get through it. Systemic cyclosporine also may be helpful in cases where TSW is present but atopic dermatitis is still raging elsewhere and needing control. Nerve calming preparations such as topical pramoxine, oral gabapentin, and even simple cooling techniques with cool compresses, wet wraps, and even mineral water sprays can work together to offer relief in aggregate for these unfortunate patients.” (7)

Clinics in Dermatology, May-June 2003:

“In addition to discontinuation of all corticosteroids, we instituted a therapeutic regimen of emollients, antihistamines, baths, Burow’s solution, and ice compresses. As flares became progressively less severe, UVA and UVB treatments, one to three times a week, were begun in some patients. In five cases, PUVA was instituted when initial atopic dermatitis had been very widespread. Two patients had tried topical tacrolimus but had stopped because of increased irritation. Two of the patients with chronic actinic dermatitis were given a 2-to-3 month course of oral cyclosporin, 1 to 3 mg/kg/day, which appeared not to alter the course of the withdrawal phase. In no other instance were antimitotics, immunosuppressives, or immunomodulators utilized.” (3)

International Journal of Dermatology, Jan-Feb 1979:

“Finally, what can be done for addicted patients? This is no enterprise for the short- tempered, impatient physician. Withdrawal is agonizing and the doctor must be enrolled in the battle emotionally, providing strenuous support and unremitting encouragement. Frequent contact, by phone and in person, will be necessary to allay fear and to maintain an optimistic outlook.” . . .

“For stalwart, stoical patients, we have used “cold turkey,” replacing the steroid with lubricating cream, applied liberally q.i.d. . . . For most patients, we follow a weaning protocol, using first 2.5% hydrocortisone for several weeks with a warning that this may not completely prevent a rebound flare. Eventually we drop to 1.0% hydrocortisone and finally we substitute lubricating cream, at which time a minor flare is not unusual.” (4)

Cutis, April 2009:

“In children, the treatment of SIRD [Steroid-induced Rosacea-like Dermatitis] is similar to adults and involves cessation of topical steroid use as well as therapy with oral and topical antibiotics. As tetracyclines are contraindicated in children because of discoloration of teeth, oral erythromycin is the antibiotic of choice. A dosage of 30 mg/kg daily every 12 hours for 4 weeks has been recommended. There have been no case reports regarding the use of tacrolimus and pimecrolimus in the treatment of children with SIRD.” (11)

Journal of the American Medical Association Pediatrics (Formerly Archives of Pediatric and Adolescent Medicine), January 2000:

“Although it has been recommended to gradually withdraw topical steroids in children for fear of a worsening of the rosacea, we reasoned that to continue treating with the preparation that induced the condition could not be supported. Therefore, in all patients, we recommended an abrupt cessation of topical steroid use and initiating treatment with oral erythromycin stearate at 30 mg/kg per day in 2 daily doses for 4 weeks or topical clindamycin phosphate twice daily for 4 weeks in 6 patients who had a history of erythromycin intolerance or allergy. . . .

“Abrupt discontinuation of topical corticosteroids and institution of oral antibiotics resulted in clearing . . .. This finding does not support the concept that prepubertal children with steroid rosacea need to continue low-strength steroids in a gradual withdrawal strategy. This conclusion is supported by the finding that 54% developed the steroid rosacea while being treated with the lowest-strength (class 7) topical corticosteroids. Even over-the-counter hydrocortisone preparations induced steroid rosacea in susceptible children.” (14)

Nursing 2007, September 2007:

“Your patient will need a clear outline of what to expect during the withdrawal period. For example, she needs to know that rebound flares will occur, but that they’ll be temporary. To relieve withdrawal symptoms, tell her she can apply cool compresses or refrigerated emollients such as petroleum jelly (Vaseline) or glycerin and rosewater, which have minimal irritant and sensitization potential. . . . Learn to recognize this condition in patients, then give them your guidance and emotional support as they withdraw from steroids and break the cycle.” (8)

Indian Journal of Dermatology, Venereology and Leprology, 2011:

“Treatment is difficult as there is rebound phenomenon with discontinuation of the topical steroid. Gradual tapering with complete cessation of the topical steroid and addition of oral anti-inflammatory antibiotics and/or topical antibiotics are usually recommended to get a good clinical result.” (6)

Clinical, Cosmetic and Investigational Dermatology, July 2016:

“Since the long-term prognosis in AD patients using TCS is not superior to those not using TCS, and there is evidence that a significant number of AD patients improve without using TCS, managing patients declining TCS should be an acceptable scenario. Moreover, if these patients have topical steroid addiction in addition to AD, their symptoms will not resolve unless they cease using TCS. If physicians decline to manage these patients and they are left without medical supervision, then they would be at greater risk of an adverse outcome due to secondary infections. Hence, we believe that physicians treating AD patients should be open to managing them without the use of TCS, if the patient is competent and makes this choice.” (15)

ITSAN Support Community:

The vast majority of our members ceased topical steroids “cold turkey.” Our members report that tapering topical steroids (whether by substituting a weaker steroid or using less of often, or both) seemed to prolong the steroid rebound phase. To date, a topical steroid “step down” method without rebound or relapse of symptoms has not been discovered. However, step down therapies may (in theory) be helpful in reducing the systemic symptoms of the syndrome. Successful treatment regimens include ceasing topical/oral/injected corticosteroids, treating symptoms, and monitoring for infection.

Narrowband UVB light therapy can be a helpful option in the later stages of TSWS, when the skin is no longer raw, burning or oozing. UV therapy can cause irritation when used in the early stages, so caution must be used.

Immunosuppressants and immunomodulators have also helped some of our community members lessen the severity of TSWS symptoms. However, these medications are not meant to be used long term. There are side effects and risks that all patients need to be aware of to have proper informed consent. Many in the TSW community also experienced short-lived relief, with return of symptoms and/or new symptoms over time – mirroring their topical steroid withdrawal experience.

Infections reported in support groups are most commonly Staph, MRSA, and Eczema Herpeticum. Skin is open and vulnerable to infection during TSWS, so physician support and close monitoring is imperative. Treatment methods for infection and infection prevention include: swabbing for infection, antibiotics (oral or topical), antivirals, bleach baths, apple cider vinegar baths, saltwater baths, as well as dry wrapping (or with an emollient) in gauze, eczema wear, and gloves. Many of our members also seek out alternatives for infection prevention which include silver sprays, antibacterial essential oil blends, coconut oil, etc. Please see the “Coping with TSWS” tab for tips culminating in a “Survival Guide” for TSWS sufferers from one member to another.

The most important things to remember when treating TSWS topical steroid cessation is imperative, the time frame is protracted, symptoms vary at different stages, and treatment must be tailored to the individual.

▲ Back to Questions

Q: What is the time frame for TSWS to resolve?

At a glance:

Recovery is protracted
Time required to recover is proportionate to the time topical steroids were used
Symptoms take many months to several years to resolve

Excerpts from the literature:

Dermatology Times, October 2012:

“It can take several months to several years for the erythema and symptoms to subside…” (5)

Australian Family Physician, June 2016:

“The prolonged withdrawal period (months to years) can take a significant toll on the patient’s mental health. Multiple telephone calls and visits for reassurance have been recommended.” (9)

International Journal of Dermatology, Jan-Feb 1979:

“The first few weeks will be a living hell. The time required for the skin to return to normal depends on the degree of atrophy. Long-term addicts may have damage which cannot be completely reversed, but for the most part great improvement can be anticipated over a period of months. It is not wise to underestimate the time required.” (4)

Clinics in Dermatology, May-June 2003:

“This pattern of flare and quiescence repeated itself but each time with flares of shorter duration and more prolonged quiescent periods. . . . Edema, burning, and erythema decreased with each episode of flare. . . . The time required for corticosteroid withdrawal mirrored the time over which they had originally been applied, and was often protracted.” (3)

British Journal of Dermatology, November 1972:

“The clinical picture was variable, sometimes closely resembling rosacea and sometimes peri-oral dermatitis, taking an average of 1 year to clear.” (12)

Nursing 2007, September 2007:

“Your patient may need support by telephone follow-up because emotional distress often accompanies withdrawal. Warn her that symptoms may last for many months, proportionate to the time she used the topical steroid.” (8)

ITSAN Support Community:

Within the ITSAN community, recovery time is variable, protracted and measured in months to years. Full recovery from all symptoms takes years for the vast majority. There have been several cases that resolved in 12 months or less, but these are not common within the TSWS community. There seems to be a misunderstanding in the medical community about length of time required to resolve TSW Syndrome; the persistent belief is that the time frame is far too prolonged to be accurate. However, both the literature and reports within the ITSAN support groups reveal that recovery is a lengthy process that is not linear – often described as “two steps forward, one step back.”

The path to recovery is marked by repeated flares and calm periods, with symptoms generally being the most severe during the first year. Flares eventually become few and far between, less severe, and no longer full body. Many report becoming fully clear after TSWS resolves, while some (especially children) report returning to typical eczema-looking patches in conventional places (hands, feet, behind the knees, creases of elbow, etc.). Our members report preferring to treat residual patches without steroids, as opposed to risking relapse of TSWS. Current therapies focus on comfort and infection prevention. More research is needed to discover treatments that could possibly speed up the recovery time frame. Cortisone-free alternatives need to be sought out for these patients who can no longer tolerate topical steroid therapy.

▲ Back to Questions

Q: Are TSWS patients ‘Steroid Phobic’?

At a glance:

Patients who discontinue steroids are not “steroid-phobic,” but are seeking to treat TSW Syndrome in earnest
Recovery is achieved by discontinuing topical steroids, steroid phobia is a separate issue
TSWS results from use of topical steroids, not “underuse” or avoidance

Excerpts from the literature:

Australian Family Physician, June 2016:

“Steroid phobia is a separate issue and is not applicable in these patients: TCS addiction is thought to be the result of TCS misuse (overuse and not underuse of TCS). After complete withdrawal, a patient with TCS addiction can expect normal skin or the original eczema symptoms.” . . .

“By being aware of TCS addiction and withdrawal, practitioners may be better able to help prevent this adverse effect and offer supportive care to patients in TCS withdrawal. It would also be useful for GPs to be able to discuss TCS addiction and withdrawal with patients who seek to clarify information they glean from non-medical sources.” (9)

Drug, Healthcare and Patient Safety, October 2014:

“The undertreatment because of steroid phobia is discussed here. . . . TCS is effective, at least for short-term use, on the condition that the patients are not addicted. Therefore, the excessive warning regarding “undertreatment” may may infringe on the patients’ right to select treatment methods and induce the social prejudice that such patients may not be trying to treat the disease earnestly. . . .

Moreover, when the patient becomes addicted to TCS, the recovery cannot be achieved without “undertreatment”.” (2)

ITSAN Support Community:

This is a sensitive topic within the community. Our members have all used topical steroids diligently in the past. However, topical steroid therapy was ineffective and created a new, more severe problem. The term “phobia” denotes extreme or irrational fears. TSWS patients are not abstaining from a treatment based on irrational fears — they are abstaining from a treatment that has caused an iatrogenic condition.

According to a recent poll of the ITSAN Support community, 99.99% of those polled (160 people) used prescription topical steroids, as opposed to strictly over-the-counter. In a subsequent poll, 86% reported developing TSWS while using their medication exactly as their doctor prescribed. This is a patient population who sees their doctors, fills their prescriptions and uses them as directed. This is not a population that is afraid of medical therapies. TSWS is a corticosteroid-induced condition that requires cessation of steroid therapy to treat the condition — this must never be confused for “steroid phobia.”

▲ Back to Questions

Q: What is the prevalence of TSWS?

At a glance:

Prevalence of TSWS is unknown
TSWS is underreported and not well characterized
TSWS is more common than realized, but frequently goes unrecognized

Excerpts from the literature:

Australian Family Physician, June 2016:

“The incidence and prevalence of TCS addiction and withdrawal are unknown.” (9)

Cutis, April 2009:

“The exact incidence of SIRD [Steroid-induced Rosacea-like dermatitis] is not known . . . . The most common age at presentation is 40 to 50 years; however, it also has been described in infants, children, and elderly patients.” (11)

Journal of the American Academy of Dermatology, March 2015:

“More data are needed regarding the frequency and duration of use that predisposes to this condition. Further, there are no data regarding the prevalence of this condition. It is also unclear whether children are actually less likely to develop this disorder or that cases of TCS withdrawal in the pediatric population are underreported.” (1)

International Journal of Dermatology, Jan-Feb 1979:

“Steroid addiction is a more subtle and more insidious type of side reaction. It is common but is not high in medical consciousness because it frequently goes unrecognized. Hence, it is underreported and not well characterized. Because it develops in stages, often slowly, both the physician and the patient may fail to incriminate the steroid.” (4)

Drug, Healthcare and Patient Safety, October 2014:

“There are no statistics regarding the prevalence of TSA, but a survey conducted in Japan in 2000 may provide us with some information. In the study, the situations of patients with atopic dermatitis [treated] with TCS were compared, before and after 6 months of treatment. The proportion of poorly controlled disease was 19% in adults . . . Calculated as 19% − 7% = 12% addicted adult patients, and 7% uncontrolled by other factors (ie, undertreatment).” (2)

ITSAN Support Community:

Members of our community have often expressed that prevalence is underreported. Many have even suggested making themselves or their children case studies, but treating doctors have rarely done so. Because so few pediatric cases exist in the literature, doctors may be hesitant to diagnose this condition in children. This actually perpetuates under-diagnosing and underreporting. Our community represents thousands of people, including children, yet only a few have doctors who recognize TSWS. Accurate diagnosis is key to not only providing care, but precise prevalence data. ITSAN is striving to raise awareness of this often unrecognized disease. In addition, ITSAN is laying the groundwork to organize a patient registry so that prevalence can be more accurately represented. As of now, there is no process for reporting or accessing prevalence data. To best support our patient population, please report any and all cases of TSWS that you diagnose and treat. Please publish case studies. In addition, please contact us at info@ITSAN.org to be placed on our internal physician referral list.

▲ Back to Questions

Q: How can TSWS be prevented?

At a glance:

Physicians must avoid inappropriate prescribing and lax monitoring of refills
Patients should be counseled regarding the risks, including TCS withdrawal/RSS
The best time to prevent TSWS is when topical corticosteroids are first prescribed
Safe and effective long term treatment does not include daily use of TCS
Perform medication reconciliation — be sure to ask specifically about topical products
Proper guidance, respectful usage, and close monitoring are key
Avoid TCS as a first line treatment

Excerpts from the literature:

Journal of the American Academy of Dermatology, March 2015:

“Clinicians and patients should be aware of this entity and the predisposing factors. Patients should be counseled regarding the risks, including TCS withdrawal, from prolonged daily use of TCS beyond their approved indication. Physicians must avoid inappropriate overprescribing and lax monitoring of refills.” (1)

International Journal of Dermatology, Jan-Feb 1979:

“Addiction to topical steroids is a serious medical problem which reaches tragic proportions in some cases. It is more common than realized, sly and seductive and will be prevented only when the physician becomes as impressed with the steroids capacity to do harm as they are with their remarkable power to suppress, not cure, virtually any inflammatory disease.”. . .

“What can be done to minimize the danger of steroid addiction? Banning steroids would be a final solution, but no reasonable person would propose anything so Draconian. The goal must be to use steroids sensibly and with full awareness of the risks.” (4)

Journal of the American Medical Association Pediatrics (Formerly Archives of Pediatric and Adolescent Medicine), January 2000:

“It has been presumed that over-the-counter hydrocortisone and prescription 1% hydrocortisone were safe to use in children. This is based on the inability of these preparations to suppress the hypothalamic-pituitary-adrenal axis. From our findings it is evident that low-strength steroids may induce rosacea, at least in susceptible children. The finding that the lowest-strength steroids induce rosacea contradicts the strategy that recommends decreasing the strength of topical steroid during treatment of steroid rosacea. Superpotent topical steroids, such as clobetasol propionate or betamethasone dipropionate (including the combination product Lotrisone), were responsible for the steroid rosacea in only 3% of children.” (14)

Australian Family Physician, June 2016:

“While research is very limited to date, avoiding prolonged use of moderate-to-potent TCS on the face may be prudent as this is a highly significant risk factor for the development of TCS addiction and withdrawal. Avoiding continuous use of TCS for longer than two weeks has been suggested by Fukaya et al, and the US National Eczema Association has advised the following:

‘Do not use TCS continuously for more than two to four weeks – then frequency should be tapered to twice weekly use. Your provider should strive to help create a safe and effective long term treatment plan that does not include daily use of TCS, especially on more sensitive areas.’” (9)

Nursing 2007, September 2007:

“When you perform medication reconciliation, be sure to ask specifically about topical products; many people don’t consider creams to be medications and inadvertently omit them from the medication list. Ask your patient for a complete list of topical medications that she currently uses or has used on the affected areas, including steroids, herbal preparations, and over-the-counter products. It’s a good idea to ask your patient to bring in any medications that she’s used on the affected area for you to inspect because some products contain unlabeled steroids. . . . The best time to prevent steroid rosacea is when topical corticosteroids are first prescribed. Tell your patient not to use steroids on her face for longer than 2 weeks and explain adverse drug effects such as steroid rosacea.” (8)

Practical Dermatology, September 2015:

“With proper guidance, respectful usage, and close monitoring, it seems that the vast majority of patients can use topical steroids briefly when needed, and then be steroid-free with very little risk and great benefit. . . .

Close follow up remains critical: for patients who are unable to sufficiently improve or remain clear, moving to the next rung of the therapeutic ladder is imperative, rather than simply settling for daily use of TCS. . . .

While TSW [Topical Steroid Withdrawal] may be more common than we yet know, it seems to be preventable in at least the majority of cases. This gives hope that with widespread recognition of TSW and cautious use of topical corticosteroids, we can take better care of our patients than ever before and hopefully send TSW back into obscurity.” (7)

ITSAN Support Community:

Many feel that their TSWS could have been prevented if: (1) they had been educated about the predisposing factors/risks of TSWS, (2) their topical steroid use had been closely monitored, and (3) steroids had not been prescribed as a “first line” treatment.

Many point out that they were not properly educated on topical steroid use by their healthcare provider – particularly how long is “a long period of time,” how much is “too much” or what constitutes a “large area of the body.” They feel the instructions given by their doctors, such as “use on affected areas,” gave no parameters on how long to treat or how large an area was safe to treat. The “affected area” was often a “large area of the body” and grew larger over time, but this was not usually addressed. In addition, some patients were encouraged to use their prescription “off label.” Assertions of “steroid misuse,” “steroid overuse” or even “steroid underuse” places undue blame on the patient who is actually using exactly as directed by their doctors.

Members report that their physician did not ask about their topical steroid use. Prescriptions from Allergists, Dermatologists, General Practitioners, Pediatricians, etc., were not routinely reconciled by their doctors. Some also reported using over-the-counter steroid creams or topical medications from family members that were never reconciled by their doctors. Members also report that follow-up information on number of finger tip units, areas of use, uses per day, days per month, etc., was not requested by their doctors. They did not feel their doctor knew which areas, how much, how often, or what type of topical medication they actually used during a given time frame. It is important for the physician to understand their patient’s pattern of use to properly evaluate the risk of developing TSWS.

Our members also feel that steroids should not be a first line treatment for eczema or dermatitis – especially for children and infants. Many feel that if they had been patch tested for contact dermatitis as a first step, they may have been more able to avoid triggers, thereby minimizing or completely avoiding use of topical steroids from the beginning.

▲ Back to Questions

Citations:

“A systematic review of topical corticosteroid withdrawal (“steroid addiction”) in patients with atopic dermatitis and other dermatoses,” The National Eczema Association Task Force: Tamar Hajar MD, Yael A. Leshem MD, Jon Hanifin MD, Susan T. Nedorost MD, Peter Lio MD, Amy S. Paller MD, Julie Block BA, Eric L. Simpson MD, Journal of the American Academy of Dermatology, 2015 March, 72(3), pp. 541-549. DOI: http://dx.doi.org/10.1016/j.jaad.2014.11.024
“Topical Steroid Addiction in Atopic Dermatitis,” Mototsugu Fukaya MD, et al. Drug, Healthcare and Patient Safety, 2014;6: pp.131–138. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4207549/
“Corticosteroid Addiction and Withdrawal in the Atopic: The Red Burning Skin Syndrome” Marvin J. Rapaport, MD and Mark Lebwohl, MD. Clinics in Dermatology, May–June 2003, Volume 21, Issue 3, pp. 201–214 http://www.sciencedirect.com/science/article/pii/S0738081X02003656
“Steroid Addiction.”Albert M. Kligman, M.D., Ph.D. and Peter J. Frosch, M.D. International Journal of Dermatology, Jan-Feb 1979,Vol 18, pp 23-31. http://onlinelibrary.wiley.com/doi/10.1111/j.1365-4362.1979.tb01905.x/abstract
“Topical corticosteroid addiction may be to blame when ‘rash’ defies treatment,” Paula Moyer, Dermatology Times, 1 October 2012. http://dermatologytimes.modernmedicine.com/dermatology-times/news/modernmedicine/modern-medicine-news/topical-corticosteroid-addiction-may-be-b?page=full
“Topical corticosteroid-induced rosacea-like dermatitis: A clinical study of 110 cases,” Sanjay K Rathi MD and Leishiwon Kumrah MD, Indian Journal of Dermatology, Venereology, and Leprology, 2011,Volume 77, Issue 1, pp 42-46. https://ijdvl.com/topical-corticosteroid-induced-rosacea-like-dermatitis-a-clinical-study-of-110-cases/
“Addressing the Challenge of Topical Steroid Withdrawal,” Peter Lio MD, Practical Dermatology, September 2015, pp 41-42. http://practicaldermatology.com/2015/09/the-challenges-of-topical-steroid-withdrawalogy/
“Facing up to withdrawal from topical steroids,” Mary C. Smith, RN, MSN; Susan Nedorost, MD; and Brandie Tackett, MD, Nursing, September 2007, vol 37, issue 9, pp 60-61. http://journals.lww.com/nursing/Citation/2007/09000/Facing_up_to_withdrawal_from_topical_steroids.46.aspx
“Topical corticosteroid addiction and withdrawal – An overview for GPs,” Belinda Sheary, Australian Family Physician, June 2016, vol 45, No. 6, Pages 386-388. http://www.racgp.org.au/afp/2016/june/topical-corticosteroid-addiction-and-withdrawal–-an-overview-for-gps/
National Eczema Association Education Announcement: Use of Topical Corticosteroids for Eczema. https://nationaleczema.org/education-announcement-topical-corticosteroids-eczema/
“Steroid-Induced Rosacea-like Dermatitis: Case Report and Review of the Literature,” Amy Y-Y Chen, MD; Matthew J. Zirwas, MD, Cutis, April 2009, Volume 83, pp 198-204. https://www.ncbi.nlm.nih.gov/pubmed/19445310
“A rosacea-like eruption of children.” JA Savin, S Alexander, R Marks, British Journal of Dermatology, November 1972, Volume 87, Issue 5, pages 425–429. http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2133.1972.tb01589.x/abstract
“Steroid rosacea in children,” HL Franco, WL Weston, Pediatrics, July 1979, Volume 64, Issue 1, pages 36-38. http://pediatrics.aappublications.org/content/pediatrics/64/1/36.full.pdf
“Steroid rosacea in prepubertal Children,” WL Weston, JG Morelli, Journal of the American Medical Association Pediatrics (Formerly Archives of Pediatric and Adolescent Medicine), January 2000, Volume 154, Number 1, pages 62-64. http://archpedi.jamanetwork.com/article.aspx?articleid=348509
“A prospective study of atopic dermatitis managed without topical corticosteroids for a 6-month period,” Fukaya et al, Clinical, Cosmetic and Investigational Dermatology, July 2016, Volume 9, Pages 151—158 https://www.dovepress.com/a-prospective-study-of-atopic-dermatitis-managed-without-topical-corti-peer-reviewed-fulltext-article-CCID
Rosemarie Curley. “A systematic review of topical steroid withdrawal in children diagnosed with eczema.” PROSPERO 2015:CRD42015019001 Available from http://www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42015019001
“Prevalence of atopic diseases and the use of topical corticosteroids. Is there any connection?” Alexander N. Pampura, Medical Hypotheses, 2005;64(3):575-8. http://www.ncbi.nlm.nih.gov/pubmed/15617870

TSW Syndrome and Resources for Doctors

Educational videos on TSW Syndrome

Dr. Belinda Sheary

Dr. Peter Lio

Dr. Mototsugu Fukaya, et al

Q&A: Answers from the literature

Q: What are other names for TSW Syndrome in the literature?

At a glance:

Excerpts from the literature:

ITSAN Support Community:

Q: How does TSWS present?

At a glance:

Excerpts from the literature:

ITSAN Support Community:

Q: How can TSWS be differentiated from severe Eczema?

At a glance:

Excerpts from the literature:

ITSAN Support Community:

Q: How does TSWS present in children?

At a glance:

Excerpts from the literature:

ITSAN Support Community:

Q: How is TSWS treated?

At a glance:

Excerpts from the literature:

ITSAN Support Community:

Q: What is the time frame for TSWS to resolve?

At a glance:

Excerpts from the literature:

ITSAN Support Community:

Q: Are TSWS patients ‘Steroid Phobic’?

At a glance:

Excerpts from the literature:

ITSAN Support Community:

Q: What is the prevalence of TSWS?

At a glance:

Excerpts from the literature:

ITSAN Support Community:

Q: How can TSWS be prevented?

At a glance:

Excerpts from the literature:

ITSAN Support Community:

Citations:

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