A man has shared the “living hell” he went through after using eczema creams – with the withdrawal from the topical steroids leaving him in agony.
Jake Lazar, 24, from New York, US, was previously prescribed steroid creams to treat his “very minor” childhood eczema.
When it resurfaced in July 2020 with red patches of dry skin on his hands and wrists, he was again given triamcinolone acetonide – a mid-strength potency steroid cream.
Jake used the cream for two weeks before stopping, under his doctor’s recommendation, but noticed the red patches immediately came back with a vengeance.
A different GP gave him a stronger, super potent steroid to use – clobetasol propionate – and, again, after two weeks he ceased use of it and noticed the dryness was spreading.
Concerned that the steroids were making things worse, Jake declined his dermatologist’s offer of more creams, and was referred to a rash specialist.
He was given a third type of steroid cream – desoximetasone – and, after the fortnight of use, which concluded in February 2021, he believes his body entered a painful withdrawal state.
He began to experience extreme itching, horrific inflammation, was covered almost entirely with thin, reddened skin, and the agony caused mental health issues.
He only realised what was happening to him when he looked online and found a community of people on Reddit experiencing topical steroid withdrawal (TSW) – severe symptoms including red, burning and itchy skin that users of topical steroids developed after ceasing use.
“I felt like I was being burned alive, every second of every day,” Jake, who works as a client partner, told Jam Press.
“The pain that I experienced was almost indescribable. I was covered from my ears down to my thighs in skin that was so inflamed, it appeared to be something non-human.
“My skin itched and I felt like I had insects crawling on me at all hours of the day and night.
“The only relief I could find was when I would scratch so hard that my skin would rip away, leaving me to scratch at bare flesh that would sting and bleed all over myself.
“My skin was so hydrophobic that showering felt like acid being poured onto my skin. Every shower was a painful experience and I eventually began to develop anxiety about it, which I still deal with now.
“My skin smelled of metal, a pervasive, nauseating smell. I wanted to rip my skin off, and the mental restraint it took to keep from doing that nearly drove me insane.
“I felt like it broke me again and again, every single day.
“I was in such a state of agony, both mentally and physically, that I felt my grip on reality slowly start to slip.
“I thought about committing suicide to escape the pain.
“It was a living hell.”
When he visited his doctors, he claims he was told it was “impossible” that he was experiencing TSW and was told not to believe everything he read on the internet, after sharing the research he had found online.
Due to the distrust he then felt for the system, he never went back. He also decided against going to the hospital or seeking pain relief as he believes he would have been offered more steroids or other pharmaceuticals.
He added: “I had come to the realisation that in order to truly heal I needed to give my body time.”
Jake said he was never warned of any of the potential side effects of topical steroid use, other than possible thinning of the skin.
To make matters worse, he believes he was mis-diagnosed with eczema initially, after talking to other people online going through TSW.
He said: “My body developed a dependency on the steroids so quickly, I would come to learn, because my initial rash that the first GP diagnosed as eczema was not eczema at all – but simply a sweat rash that developed from coming in contact with a poor quality pair of gloves.
“I was misdiagnosed from the start, and wrongfully prescribed all of these steroids, which I was applying to essentially healthy skin, suppressing inflammation that did not exist in the first place.”
Jake largely withdrew from society while he battled the horrific ordeal, only leaving his apartment for groceries and exercise – which he says he forced himself to do to keep from completely losing his sanity.
He added: “Essentially I had zero human contact because I felt so disgusting that I couldn’t bear to be seen.
“It’s quite a surreal experience to watch your body destroy itself, in real-time, as you are helpless to do anything but watch.
“I could not bear to look at myself in the mirror and the times when I accidentally did catch a glimpse of my reflection, I barely recognized myself.
“I was in so much pain that it felt like my brain just shut down, and I don’t feel that I have completely recovered from that yet.
“I have experienced immense trauma from this and now believe that I am dealing with some symptoms of post-traumatic stress disorder. I have recurring panic attacks and flashbacks to moments when I could not see a way out of this.
“This has been the darkest time of my life, and I feel like I am a completely different person from this experience.
“I had to eventually come to a place of radical acceptance – of my situation, of myself. I’ve learned that I’m not good at being kind to myself, I’m definitely my own worst critic, so I had to constantly forgive myself for not being at my best while going through this.
“I learned many lessons from this and am emerging with a completely different outlook on life.”
Jake has been in withdrawal for eight months and says he has made “major progress” – with most of his skin healed.
He plans to continue leaving his skin to repair itself.
He said: “[My skin is] almost normal, except for my hands which are still cycling through flares, as well as some fading redness near the lymph regions.
“I am still not fully able to do everything I want to do, but mainly out of embarrassment due to my hands more than anything else.
“I am now dealing with the psychological aftereffects of withdrawal, and am considering going to therapy to resolve the trauma and shell shock that I have developed due to this experience.”
Once he is fully healed, Jake plans to work with other people in the TSW community to bring awareness to the issue and hopes to change regulations regarding topical steroid prescription.
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