What Doctors Aren’t Telling You About Steroid Creams – Janelle’s Incredible Story
When Janelle Norman started to experience red, patchy rashes on her hands and feet at age 24, she had no idea about the frightening road that lay ahead of her.
It would soon become a battle for her health only imagined in her wildest nightmare, one that would teach her about a failing medical system and the depths of her own strength.
The outbreak of eczema at age 24 didn’t come as too much of a surprise, Janelle explains, having previously endured small, random outbreaks of eczema in her early childhood. “My eczema showed up when I was fairly young, probably 3 or so. My mom, being a nurse, was pretty knowledgeable and tried to do what she could. I believe she used hydrocortisone a little bit, but used another product called ‘goose grease’ as well. I grew out of that stage in my early childhood.” After seeing her doctor, Janelle was ordered to use a steroid cream once again, which eliminated the outbreak for a short while. Two weeks later, however, the rash had resurfaced, but this time with increased severity. Janelle saw a repeating pattern taking place, that is, her eczema would clear up briefly whenever she applied the steroid cream, but would return with renewed force as soon as she stopped. Concerned, Janelle asked her dermatologist to conduct allergy testing to see if there were any particular irritants that might be contributing to her outbreaks. He assured Janelle that she was likely hypersensitive to many foods, and that avoiding these triggers would prove to be difficult. Instead, he prescribed her a new cream. When asked about any potential long-term side effects from using the cream, Janelle’s doctor answered, “I use this [product] on babies.” But the steroid cream was showing poor results, as Janelle watched her body slowly succumb to the spread of a relentless disease. By this time, her thighs, arms, shoulders, and collarbone area were engulfed by a red, itchy rash. In addition to her skin problems, Janelle was developing sensitivities to certain foods, including various fruits and spices. This prompted her to switch dermatologists to get a second opinion on her condition. Lo and behold, her doctor found she was allergic to an array of plants native to her hometown Kamloops, a small city located in the semi-arid region of central British Columbia. While her new dermatologist did his best to try and gain control over the situation, Janelle was beginning to realize that her eczema was now running the show. Whenever she tried to wean herself off of the creams, a vicious retaliation of eczema would always proceed her abandon. Not to mention, Janelle’s asthma was now acting up, creating an unwelcome dependence on her steroid inhaler. In what seemed like a universal dump of bad luck, Janelle’s new dermatologist revealed that he would be moving his practice across the Janelle and her ex-boyfriend, Jason. country, leaving Janelle in critical condition. Her eczema had become the focal point of her existence, she said, affecting her sleep, career, and overall quality of life. “I was now having lots of trouble sleeping due to the itching, having trouble finding comfortable clothing, and it was affecting my social life. I was having constant allergic reactions to almost everything I was eating... eventually I had to quit my dream job, I produced and sold over 400 paintings since 2009, an absolute dream career that was taken away from me because of my eczema. “I was desperately searching for answers on the internet like I had become obsessed with [it]... No matter where I turned it seemed like nothing was going to help me.” But then one day while searching for information on ‘incurable eczema’, Janelle came across the answer to her torment she’d been waiting for: “Have you tried everything to cure your eczema except stopping your steroid creams? You might have steroid addicted skin.” This was a moment of revelation for Janelle. “I all of sudden knew that this was the answer I had been looking for for the past few years. My skin had become hooked on the topical steroid creams, and it was inducing the condition to worsen and slowly damage the systems in my body.” Finally, Janelle had found information on her mystery condition. For the first time in years, she felt relief. “The mystery was solved!” she thought. But there was a catch to the ‘light at the end of the tunnel,’ a catch perhaps more frightening than the disease itself. “Almost immediately after quitting the creams, one goes through a massive withdrawal process in order to detoxify and heal the body. I saw pictures on [the forum] of horrible injuries to the face and limbs of people that looked like they had been burned. Some were mild and some were terrifying.” Janelle figured her withdrawal symptoms wouldn’t be as bad as the more severe cases considering she had only been using the creams heavily for a few years. Unfortunately, no doctor had any answers for her. She was alone in her decision to move forward, but knew there was no other option. “I felt very passed down through the medical system. I decided that if I was going to get any better I was taking my life into my own hands and trusting my gut. Even though I would go through hell I was determined to get my life back. It was time to quit the steroids. I came back home, and threw all the creams in the garbage on January 5, 2014.” Janelle during the peak of her steroid cream withdrawal symptoms. Notice the intense swelling and inflammation around her eyes. “Never could I have prepared for what would take place over the next few weeks” Janelle says. “The skin on my face started to split open all over... and my neck did the same. It was utterly horrific. It was like I was being set on fire and my skin was bursting open...” Janelle’s mother arrived from out of town to find her daughter in serious condition. Her face had become infected from the large cracks in her skin, and fluid was now oozing out of the lesions, signalling it was due time to get Janelle to a hospital. When she arrived in the emergency room, Janelle was met with a roomful of curious stares from both patients and nurses.
The staff thought she was a chemical burn victim at first, Janelle explains. Furthermore, the ER doctor was becoming frustrated because Janelle and her loved ones were refusing steroid shots meant to subdue inflammation. He had never even heard of steroid cream withdrawal before. “He didn’t understand what I meant when I said I was addicted to the steroids.” When doctors first saw Janelle during the worst of her steroid cream withdrawal, their first thoughts were that she must have experienced a critical chemical burn. After receiving antibiotic therapy to treat her infection, Janelle spent the rest of her healing phase at home.
The next few weeks proved extremely difficult for Janelle.
The initial flare-up had deemed her face unrecognizable. Janelle explains how she basically “lived in her bathtub” due to the excruciating pain she was experiencing. In the months that followed, Janelle faced many small flare-ups, the stress of which seemed to be causing her hair to fall out. “My skin started to ooze fluid... I would soak through countless changes of clothes and the ooze was a terrible smell of burned raw skin. It was like I had been thrown into the most intense battleground for my health ever.” Day by day, she patiently waited for her body to heal, with hope for the day she would see her recovery. Like so many others going through steroid cream withdrawal, Janelle’s road to recovery doesn’t have a fixed happy ending. One year after her steroid cream cessation, Janelle is still dealing with withdrawal symptoms, though her most severe side effects have subdued. Many people experience random outbreaks for years to follow, an agonizing path that sees many people giving up and returning to the creams. Today, Janelle finds herself passionate about speaking about steroid cream withdrawal, with the hope of helping others who may be experiencing the same thing, or even better, stopping people from using the creams in the first place. “One year ago I jumped into the most intense journey I would ever take... the last 365 days have been a true test of willpower, strength, courage, humility, and hope,” she wrote to her friends and family on her Facebook page. “I [was] hesitant to share my photos of what happened throughout 2014, but I feel the public should know how seriously horrific the [side-]effects of hydrocortisone and topical steroid creams can be. I need to spread the word – because our dermatologists are NOT telling anyone about this. In fact very few of them even understand that it is a problem.
There are few medical facilities that understand or acknowledge TSA/TSW, because the symptoms present themselves kind of on the sly.“ She urges anyone who may be experiencing symptoms of steroid cream withdrawal to visit itsan.org, a non-profit organization aimed at providing people with information and resources about SCW. “I feel like if my skin condition was given proper care in the beginning (like further testing and exploration into the cause of my eczema) I may have been able to avoid [all of this]... Even when I had asked the first dermatologist to allergy test me, he had said to stick to the creams because my allergies would have been impossible to track down and address all together... So basically, he was treating the symptom with a bandaid for years... a bandaid that almost killed me.” We have the power to stop this suffering from happening to more people, so please, share this story with your family and friends and get the word out about the dangers of steroid creams. This extends to people taking oral steroid medication and people using steroid inhalers for asthma as well. It is imperative to be asking your doctor about any and every side effect with any recommended medication, because as we’ve seen, the consequences can be fatal. Have you or anyone you know experienced steroid cream withdrawal? Please share your story or thoughts with us in the comment section below! .
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