Stories and Photos

Stories and Photos of TSW Syndrome

Topical Steroid Withdrawal Syndrome is a painful condition affecting individuals who use topical steroids for an underlying skin condition. It is not understood why some individuals develop TSW after using topical steroids and others do not.

What is understood is that TSW Syndrome is a medical condition that affects thousands of people worldwide. Their suffering is undeniable. They hope that by sharing their stories they will shed light on this condition and help others avoid this excruciating experience.

Rochelle, age 27

Topical Steroid Withdrawal: 19 months

Rochelle used topical steroids for about five years on and off for eczema that first appeared at age six, which cleared up her problem at the time. When eczema returned on her lips at age 16, she used topical steroids again briefly, and again the problem resolved. At age twenty, due to a reaction from makeup, Rochelle applied topical steroids to her eyelids. This time, however, her rash spread uncontrollably. Eventually, the cream stopped working at all. Feeling hopeless about her situation, she found ITSAN.org. Rochelle was shocked when she learned her medicine could be what was causing the problem. After 19 months of patiently struggling with incessant, painful, itchy symptoms, her body finally recovered. Rochelle is now living a full and healthy life with no skin issues.

Jake, age 30

Topical Steroid Withdrawal: 1 year

Jake, had eczema from birth and was prescribed topical steroids for 16 years. At the age of 27, he realized his escalating skin issues were steroid-induced eczema. As Jake withdrew from steroids, he suffered from insomnia, constipation, edema, adrenal fatigue, distress of the kidneys, liver and lymph system, uncontrollable itch sensations, loss of hair, loss of skin, mental/emotional distress… the list goes on. He was monitored by a clinical nutritionist, medical doctor and a psychotherapist.

Twelve months after withdrawing from topical steroids, his skin was starting to repair and was stronger than it had ever been before. Jake made dietary changes, changed living habits, and avoided known triggers. Since completing the withdrawal process, Jake now lives an eczema-free life.

He tans and you can’t get him out of the ocean, which he could never tolerate before hand. He now has a dog who causes him no skin issues at all. Also, his previous issues with asthma have dramatically changed. The lifestyle Jake now leads is healthy, and he loves every minute of it.

Isaiah, age 2

Topical Steroid Withdrawal: 18 months

Baby Isaiah started topical steroid withdrawal (TSW) in May of 2013 after about 10 uses of over the counter hydrocortisone (Cortizone 10 & Aveeno Hydrocortisone) applied over a 2 month time span. Those uses had already established topical steroid addiction, but no one realized it at the time.

He was then admitted into his first of three extended hospital stays where he received around 5 days of prescription topical steroids and systemic steroids (Prednisone) through an IV. That’s when he began to ooze and pour fluid from every pore in his little body, covered in itchy lesions, and the extreme torture truly began. That was the week his parents found the information about RSS on ITSAN.org. Isaiah continued to receive medical care, and his doctors agreed to stop steroids of all types. His condition improved dramatically as time passed.

For such a brief history of topical steroid use, Isaiah’s recovery took nearly 18 months. It was a hellish journey, but the reward of healthy skin and a healthy body in the end was worth it. He is a beautiful, normal, itch-free toddler who now lives a normal life!

Juliana, age 26

Topical Steroid Withdrawal: 27 months

Juliana started began topical steroid withdrawal before she actually knew about Red Skin Syndrome, because topical steroid treatment didn’t seem to offer relief. It was distressing, as she believed she had to live with bad skin forever. After reading Dr. Rapaport’s journal article about topical steroid addiction and withdrawal, Juliana suddenly felt hopeful that perhaps one day she too would be rid of this uncomfortable condition.

Stopping steroids was just the start, the rest of the journey took more than 2 years and it wasn’t easy. Now that she has recovered, she is so glad she decided to stick to her decision, even when things were really tough. Juliana says she has learned so much from RSS, and it has changed her and molded her into a better person. She feel like a winner at the end of a marathon!

Bill, age 80

Topical Steroid Withdrawal: 24 months

Bill’s skin issues began over 5 years ago when he developed a rash several doctors were unable to identify, which they believed may have been caused by a bite or type of mite. As the rash failed to clear, his doctors prescribed increasingly potent topical steroids. Despite treatment, his rash and itching became more and more unbearable.

He spent hours on the internet, and finally after 3 years without relief, he found the ITSAN.org site. Bill was far too ill to travel at that point, but he began to consult with dermatologist Dr. Marvin Rapaport by email, telephone conversations and pictures. Dr. Rapaport tried to prepare him for at least 2 years of misery, hours in the bathtub, scaling skin, skin that felt as if it were “on fire”, as well as the relentless itch.

Bill says he had no life during withdrawal. His day to day improvement seemed almost imperceptible. But when he looks back now at his withdrawal progress pictures, the healing of his skin is undeniable. He is down to one last lesion now, and still fights the itch in that particular area. But the progress towards healthier skin and brighter days is apparent.

Asif, age 38

Topical Steroid Withdrawal: 24 months

Asif’s skin journey started when he moved from Canada to New Zealand in 2008. After moving he developed severe allergies accompanied by itchy skin on his legs. He was referred to a dermatologist, and he was prescribed his first dose of Prednisone. He got better, but a week later the skin issue came back ten fold and developed into full body redness and rash. He was prescribed more Prednisone and Betacream (a combination of topical steroid and antibiotic). This routine was followed for 4 years, but his skin was still not better and he became very ill.

Searching for answers, Asif came across ITSAN.org and he knew he was on the right path. In February 2012 he stopped all topical steroids and began the withdrawal process. RSS lasted for around 2 years in varying degrees, and he explains it as the worst experience of his life. Along with the usual extreme itch, Asif began to experience ooze, profound skin shedding, excessive sweating, constant chills, and no appetite. He also had severe hyper-pigmentation, as his skin turned several shades darker, to the point where he became unrecognizable for a long period of time. He also lost sections of hair on his scalp, eyebrows, and body hair.

In January of 2013, nearly 1 year off topical steroids, Asif turned the corner. His skin condition and other symptoms of RSS abated, and he was almost back to normal. As the next year passed, he experienced even more improvement. To this day he still get minor eczema flares, but he explains they are much easier to deal with and he is living life again!

Talia, age 9

Topical Steroid Withdrawal: 19 months

Talia, was initially prescribed Triamcinolone for eczema on her eyelid. After a visit to the eye doctor, her parents were advised that the Triamcinolone was too strong and the doctor stepped her down to Desonide. Her parents were careful never to over-treat due to the risks of cataracts and glaucoma explained to them by the eye doctor. In the meantime, the eczema spread to Talia’s other eyelid.

After using topical steroids 5 to 7 days a month for over two years, Talia couldn’t go more than a few days without her eyelids flaring. The rash then began to spread to her face, so the dermatologist prescribed a stronger steroid (Westcort – Hydrocortisone Valerate). This cleared temporarily, but the rash returned and continued to spread down her back. When the dermatologist then prescribed another topical steroid (Dermasmoothe), her parents began to suspect the topical steroids were somehow involved in her worsening skin, though they did not know how.

When Talia’s parents found the information about RSS on ITSAN.org, they knew this had been their daughter’s experience. Before stopping the steroids, her parents took Talia to every other doctor they could think of — Infectious Disease, a GI doctor, allergists, and a pediatric allergist. Most doctors were reluctant to believe that somehow steroids were involved with her now distressing skin issues. After stopping topical steroids on her eyelids, Talia’s parents were alarmed to see that the red flushing rash soon affected her entire body with head-to-toe Red Skin Syndrome.

Talia’s mother explains this experience as being painful and anxiety-filled, “It is heart-wrenching to see your child in pain daily for months, and for you as a parent to not be able to do anything but try to ease the symptoms.” Now at 19 months off topical steroids, Talia is 90% better, happy, healthy and able to learn and play just like other kids her age. Her parents hope that the medical community will become more aware and better able to recognize early symptoms of RSS so that no one else will have to go through this type of suffering.

Maxine, age 33

Topical Steroid Withdrawal: 28 months

Maxine used topical steroid creams to treat eczema for about 22 years of her life. Initially, the eczema was only on her inner thighs and forearms. As she got older, it spread to other areas of her body. She never suspected that her skin had become addicted to the steroids. Maxine used super-potent Clobetasol during the last five years of her worst symptoms. When Clobetasol ceased providing relief, Maxine was prescribed a round of oral steroids. When relief was again short-lived, she began steroid withdrawal in January 2013.

The intense symptoms of RSS were soon to follow. Maxine experienced burning sensations, skin tightness, rashes and skin shedding, redness in the skin, sleeplessness, crazy constant itch, nail infections and nail loss due to scratching. The only typical RSS symptom she hasn’t experienced is the oozing.

Today, at 28 months off of topical steroids, Maxine estimates she is 90% better. Her residual symptoms include eczema-type patches on her forearms and inner thighs, feeling itchy a few times a day, and itching when sweating. While this has been the hardest thing she has ever experienced, Maxine is glad to have have improved so much. She says she feels a lot healthier and better off than when using topical steroids.

JE, age 11

Topical Steroid Withdrawal: 24 months

JE used topical steroid from 9 months of age until he was nearly 8 years old. He was prescribed all types of topical steroids, ranging from low to high potency. As his skin condition continued to decline, he was prescribed four courses of Prednisone. His parents knew something wasn’t right; there had to be a reason JE was getting worse and worse despite increasingly aggressive treatment.After researching, they felt sure that JE’s worsening skin condition was related to his increasing, prescribed steroid use.

His parents described his withdrawal as “hideous” for the first 6 months. The improvements were gradual, but by 2 years off topical steroids he was remarkably improved. JE still has mild eczema, but it is nothing like before or during his withdrawal from topical and oral steroids. He is thriving: swimming, going on vacations to the beach, playing sports and being a very active young man. He is happy and healthy!

Jocelyn, age 11

Topical Steroid Withdrawal: 18 months

Jocelyn was first put on topical steroids for eczema when she was about 18 months old. Although her mother followed the doctor’s orders, nothing Jocelyn was prescribed worked and actually seemed to make her condition much worse. After trying countless medications, including three $50,000 treatments of IVIG and having to administer injections of interferon, Jocelyn’s skin condition still showed no signs of improvement. Her doctor ordered more tests and took 9 tubes of blood. That was the day her mother felt like giving up. She felt Jocelyn had been put through enough.

Her mother had read the information on ITSAN.org before, but wasn’t ready to accept that steroids may have been making Jocelyn worse — until that point. The only thing they used to cope from that moment forward was prayer, benadryl, lots of Vaseline and good old TLC.

Jocelyn’s mom relied on the emotional support from other moms from the ITSAN Facebook group. They had some tough times, but they made it through. Jocelyn still has random flares, but they don’t hold her back — she is now 3 years steroid free and is much healthier and happier than ever before.

Gary, age 32

Topical Steroid Withdrawal: 14 months

Gary’s eczema, asthma and allergies had gotten progressively worse from infancy to adulthood. For the past 11 years he had been applying Betnovate, a potent topical steroid cream, to his skin. In March of 2010 he was prescribed a course of oral Prednisolone to help clear up an extreme outbreak of eczema.

He started his topical steroid withdrawal (TSW) in March of 2014 after discovering the ITSAN community. Currently approaching his fourteenth month of RSS, Gary is feeling like his old pre-TSW self again. His skin is getting better with each passing month. He hopes and feels that full recovery and fully healthy skin are just around the corner for him.

Leslie, age 29

Topical Steroid Withdrawal: 22 months

Leslie first started using over the counter Hydrocortisone in college. After college, the stress from being a full time lawyer made her skin flare badly. Her eczema started spreading and she was prescribed and instructed by her doctor to use Prednisone and Clobatesol (a super potent topical steroid) all over her body. At this point, her skin was the worse that it had ever been and continued to get worse.

She stopped steroids in 2012, and the first six months were horrific. She experienced every symptom – violent chills, red burning skin, massive amounts of ooze, shedding piles and piles of skin flakes a day. She experienced symptoms on every part of her body except the soles of her feet. Her hair fell out in big chunks. She was in a lot of pain and took a number of prescribed medications to get through the day. She was so itchy that it felt like her bones were itching.

After 22 months of withdrawal, her flares stopped and she has not had an RSS flare since. Now she is 31 months steroid free. Today her skin is better than it has ever been. Leslie still has some eczema, but her life is now completely back to normal.

Abigel, age 5

Topical Steroid Withdrawal: 24 months

Abigel, 5, started topical steroids when she was 3 months old for eczema. She was on topical steroid treatment for 2 years. The problem began as a small spot on her face and was treated with several different topical steroids. None of these helped, and actually seemed to make the condition get worse and spread to other parts of the body.

Abigel’s dermatologist then prescribed 3 different strengths of steroids: one for her face only, one for her diaper area and Derma-smoothe oil for the rest of her body. Her mother was instructed to use it twice a day, every day, and was told this was the standard protocol for managing eczema. At this point, taking even a one day break made Abigel ten times worse. She was still not sleeping through the night and was still scratching relentlessly, despite her mother following the doctor’s orders, exactly as prescribed.

After 2 weeks with no improvement at all, Abigel’s mother began searching for answers. In February 2012, Abigel started topical steroid withdrawal at 27 months old. In the early stages of RSS, she turned red, had full body oozing, pain, and was waking several times a night. Abigel had to be hospitalized at one point, and her mother had to quit her job to care for her. Since being off topical steroids for 3 years, Abigel now has her life back. Her mother reports that Abigel’s skin is 95% clear on a regular basis. She is still a little itchy some days due to mild, typical eczema patches, but it is manageable. Abigel is attending kindergarten, sleeping in her own big girl bed and even performing in ballet recitals!

Keegan, age 6

Topical Steroid Withdrawal: 24 months

Keegan started using topical steroids for eczema between 12 and 18 months of age. As his skin condition steadily declined with “worsening eczema,” Keegan was prescribed stronger, more potent topical steroids. He stopped topical steroids at age 4.

The worst part of RSS for Keegan was in the 3rd month of topical steroid withdrawal. Keegan had other major flares at 6 months and 12 months off topical steroid treatment. Neither of these flares were as severe as that first 3 month flare. Now at 24 months off topical steroids, Keegan’s residual patches on his feet might be classified as “mild eczema.” Everywhere else his skin is baby smooth, soft and supple.

Wren, age 25

Topical Steroid Withdrawal: 2 months

Wren is in the early stages of RSS, nearing the end of her second month of topical steroid withdrawal. She had been using a topical steroid called Alclometasone Dipropionate as well as Protopic on and off for 3 years. After her wedding in September of 2014, she decided to give her skin a break from her skin products. Wren’s skin got so much worse that she was told to continue to using topical steroids, and was also prescribed oral steroids.

She began searching for an answer as to what was happening to her body and came across RSS as a possibility. She had many of the typical symptoms. In hopes of it being “just eczema”, she went through two Prednisone packs, prescribed by two different doctors. When this still didn’t improve matters, Wren knew she had a long journey ahead of her.

Wren has compared her experience with topical steroids to using “dangerous bandaids — masking the problem while creating an even bigger one underneath.” Instead of covering up her problem with topical steroid creams and ointments, Wren is fighting for the long term health of her entire body. It is not an easy road, but she is optimistic and will continue on with her fight for healthy skin and total wellness.

Gabriel, age 3

Topical Steroid Withdrawal: 12 months

Gabriel first started exhibiting small patches of eczema at 10 months old. He was prescribed a “light” steroid cream by the doctor, but the eczema only became worse. The doctor then prescribed Mometasone and Elidel creams. His parents did exactly what they were instructed to do, and they watched Gabriel become more itchy and miserable before their eyes. He was then prescribed, Triamcinolone Acetonide Ointment, Fluocinolone, oral antibiotics, and oral steroids. They were instructed to apply the topical steroids 3 times a day. This therapy worked temporarily, but when it stopped working, Gabriel’s mother described his skin looking as if it were “attacking itself.”

Recovering from RSS is a long process. Gabriel has been steroid free since May 2014 and he is now doing short phototherapy sessions. Gabriel is almost back to where he was when his skin journey started, with a few stubborn itchy spots. His skin continues to heal and improve daily.

Derek, age 65

Topical Steroid Withdrawal: 24 months

Derek had used the most potent topical steroids from head to toe for about a decade before giving it all up in November of 2012. He had several different steroid-caused problems, including life-threatening cellulitis, glaucoma and subsequent lens replacement in both eyes. Derek also suffered a severe allergy to sunlight that required him to wear protective clothing each time he went outdoors.

When Derek ceased topical steroid therapy, he did not realize that recovering from Red Skin Syndrome would be so challenging. He was bedridden for the first 7 months. In the beginning stages of withdrawal, Derek was severely impaired. He had trouble even watching TV, reading and thinking clearly. His skin lost tone and he experienced a common symptom of RSS known as “elephant wrinkles.” As Derek began to regain full function, altered thermoregulation continued to make it difficult for him to leave bed.

His body was close to total recovery from RSS around 15 months off topical steroids. Though his body was healing, Derek suffered from a kind of PTSD — reeling from the severity of the trauma he had been through. Now, Derek is truly getting his life back. He is healthier than he has been in decades and life is looking up!

Nina, age 29

Topical Steroid Withdrawal: 9 months

From the time Nina was a baby, she had itchy, weepy eczema. Eventually, her parents resorted to applying steroid cream to help alleviate Nina’s itching. As Nina grew into adulthood, she began to occasionally use stronger steroids: Mometasone and Betnovate (Betamethasone). The topical steroids appeared to work for a while. But her rashes ultimately spread up her arms and to places she had never experienced eczema before, like her back, chest and stomach.

This no longer resembled her childhood rashes, as the symptoms now included inflamed, red-hot skin along with weeping and itching. Nina was referred to a local hospital dermatologist who prescribed a Class I super potent steroid cream called Clobetasol. She was instructed to apply it all over her body before an emollient to allow it to soak in. When Nina discovered that her skin condition continued to get worse, she stopped all topical steroids.

Nina’s battle with Red Skin Syndrome lasted for a total of nine months. During her recovery time, Nina spent many hours in the bath crying and itching. Her mum and partner cared for her as she suffered adrenal fatigue, insomnia, incessant itching, infected nail beds, and severe edema in the legs which prevented her from walking. Nina is delighted that she is eczema-free for the first time in her life and has beautiful skin. She has resumed normal life again!