'Rollercoaster to hell': Woman's skin condition nightmare

A Kiwi woman has opened up about her devastating experience with Topical Steroid withdrawal (TSW).

TSW, also known as Topical Steroid Addiction (TSA) or Red Skin Syndrome (RSS), is a potentially debilitating condition that can occur from using topical steroids to treat skin problems like eczema, according to the US National Eczema Association.

Thirty-one-year-old Grace Beeby told 1News she developed eczema when she was eight.

She said her mum took her to the doctor where she was prescribed a topical steroid cream, which successfully cleared her skin.

"It cleared up and then it kind of came back and they sort of said 'OK well if that didn't work, here's a stronger one', and that's kind of the cycle most eczema patients experience.

"The creams stop working or they flare even worse so then they go back to the doctor and the doctor just keeps giving them stronger cream and then eventually what happens is the creams just stop working."

Beeby said when she was in her early 20s, she went to a dermatologist who prescribed her oral and topical steroid medication as well as antibiotics.

She said she was instructed to use the creams head to toe, three times a day "like it was moisturiser".

"That was for about two weeks, and like I'd never had better skin, it was amazing, I was like 'this is it this is great it's all going to be gone'."

Beeby she had heard the term TSW but didn't actually know what it was.

"I googled it and it came up with this documentary called Preventable and as soon as I started watching it I was like 'oh my God that's me'."

She said after watching the documentary three years ago, she came off steroids completely and went into withdrawal.

Beeby says that most days she is in pain, and spends a lot of time bedridden and feeling fatigued.

She said it's been a struggle to "just rest" because there's always things she wants to do, but can't.

"I really struggle to not be hard on myself because I'm quite driven and there's things that I want to do around the house, courses that I want to do through work to progress my career, and it's all just been put on the back-burner.

"I've still forced myself to go to things like friends' weddings even when I've been feeling awful, they're just the days that I just dose up on Panadol and just get through it.

"But yeah, I probably would've already had a baby by now, we probably would've had our wedding by now, so there's lots of things.

"It's been a rollercoaster because healing is not linear, you don't feel better everyday, it's been a rollercoaster to hell."

After two decades of suffering, Beeby is moving to Thailand for six months in September to undergo Cold Atmospheric Plasma (CAP) treatment.

"It's a treatment once a week, they recommend 12 months but it's just impossible for people to go over there for a whole year.

"It's pretty scary, I've got a house, and a dog, and a fiancé, and a good job and everything that I'm going to have to up and leave.

"It's been stressful trying to figure out how it's all going to work, how I'm going to pay for it."

She said the treatment is quite physically "taxing" and works by killing bacterial and fungal infections, increasing cell proliferation.

"The rest of the time I just have to pretty much stay inside and avoid irritants."

Beeby is raising money for the trip, as her medical insurance doesn't cover it.

"I have become so unwell that I struggle to work and don't have much of a life outside of it. I try to sleep to help me heal, but I have not had a comfortable full night's sleep in three years.

"So, I am raising funds to go to Thailand where I can receive Cold Atmospheric Plasma (CAP) treatment. This is proving very successful for TSW sufferers."

She said the treatment will "definitely" work, as long as she follows the clinic's instructions while she's there.

"When I'm choosing an apartment to live in [in Thailand] it can't be anything too new, or newly renovated, it can't have been cleaned with lots of cleaning products or anything like that."

She said even just staying near a construction site could irritate the skin and be a setback for treatment.

Dermatologist Louise Reiche told 1News TSW can, in rare circumstances, be "life threatening".

She said the approach to treating the problem has changed in New Zealand in recent years.

"Usually steroid creams are used to reduce inflammation and when the inflammation is gone, we use alternative products to suppress symptoms."

Reiche also said the first step is often to check if the underlying cause of a flare up is an allergy.

She said once the possibility of allergies has been eliminated, a doctor can begin treatment.

Reiche said she "definitely" thinks there's a place for topical corticosteroids but they should be used intermittently and not long-term.

"Topical corticosteroids are often the best treatment to reduce short term skin inflammation."

Reiche said they shouldn't be used continuously "without supervision".

She added that any doctor advising a patient to use steroid cream "like moisturiser" is the wrong advice and wouldn't be recommended by a dermatologist.

"Use steroid where and when you have red inflammation or swollen red skin. Once it settles we then change to different treatments."

She said it can be used intermittently for flares.