“IT FELT NEVER-ENDING”: THE HIDDEN HELL OF TOPICAL STEROID WITHDRAWAL WITH VID AND PIX BY SAM PRINGLE A woman has shared her painful and ongoing experience of Topical Steroid Withdrawal, revealing how the condition has left her skin raw, burning, and barely able to heal. Megan Crome from London, UK, first started speaking about her condition on social media, connecting with others facing the same issue. But now, she's telling the full story behind what she’s been going through, describing it as one of the ‘most misunderstood and isolating health struggles of her life.’ Topical Steroid Withdrawal, or TSW, can develop after someone uses steroid creams for an extended period and then discontinues them. She said: “It's really hard for me to find the words to summarise what I’ve been through in the last year. “I definitely experienced the symptoms - redness, a burning sensation, itchiness… then peeling.” Megan told how the worst period hit during the first six months, when her skin flared constantly and she could barely function. She experienced peeling, redness, burning sensations, and extreme discomfort. Then, after some brief improvement, things got worse again. She had what’s known as an 'anniversary flare' - a flare-up that often happens around the one-year mark for people with TSW. Megan said that what makes the condition even harder to deal with is the fact that there’s no official cure. She said: “I reckon this is probably going to affect me for another two years. I’m hoping this summer I’ll improve again but I’m expecting another flare in winter. “This thing is so unpredictable. Everyone’s body reacts differently, and there’s no way to know how long it’ll last. “Google says you can take oral corticosteroids for a few weeks to ease the symptoms. But people in the Facebook groups say that just makes it worse in the long run. “Your body becomes dependent on the cortisol in the creams. When you stop, it doesn’t know how to reduce inflammation anymore. That’s why everything flares up. “I see so many people saying they weaned and still had just as intense withdrawal. It didn’t really help. It’s totally personal - what works for one person won’t work for another. “You just have to give it time. Time is honestly the only thing that helps. “It’s looking a bit better than in my other videos. That’s something.” ENDS
00:00So yeah, what actually is topical steroid withdrawal? I've been talking about it loads on my page, but I haven't actually explained it.
00:06So I'm going to go off the Google definition because it's really hard for me to find the words to summarise what I've been through in the last year.
00:14So Google says topical steroid withdrawal, also known as red burning skin and steroid dermatitis, has been reported in people who apply topical steroids for two weeks or longer and then discontinue use.
00:28Symptoms affect the skin and include redness, a burning sensation and itchiness, which may then be followed by peeling. Definitely experience those symptoms.
00:38Someone asked how long does it last? This is really dependent on person to person.
00:44But Google says the duration of acute topical steroid withdrawal and time to peak is variable from days to months.
00:51And eventually the skin becomes normal, but it can take weeks to years to return to its original condition.
00:58So yeah, I'd say my worst period was the first six months. Then I had a bit of normalness and then a year and I've had what's called an anniversary flare, which quite a lot of people get, which is just starting to get a bit better now.
01:09It's looking a bit better than my other videos, so I'm feeling pretty pleased with that.
01:12But I reckon this is probably going to affect me for another two years, I'd say.
01:18I'm expecting that, I'm hoping that this summer I'll get quite a bit better again and then probably have another flare in the winter again, just because of the drier conditions and the heating and stuff.
01:30Is there a cure for topical steroid withdrawal?
01:32I asked Google that question as well, and it said taking oral corticosteroids for a few weeks can help your body adjust to stopping topical steroids and reduce the symptoms of TSW.
01:43Using a cold compress, basically there's no cure and you have to go through it.
01:48You can put it off for a little bit, it thinks, with oral steroids, but a lot of people in the Facebook groups say that that just prolongs it.
01:56Oral steroids are obviously just as damaging to the inside of your body.
01:58The whole point is that it's your body which is just damaged from using steroids for so long.
02:04It's basically where your body has developed a dependency on the cortisol that these creams have in them, which reduces inflammation in the body.
02:14So basically when you stop using it, your body is unable to reduce inflammation, hence why you get this massive inflammation all over your body in all these weird different ways.
02:25You can try weaning off as well.
02:27Some people have had success with weaning, but more often than not, I see people in the groups just saying,
02:33don't bother because I weaned and I still had just as intense topical steroid withdrawal as I would have if I didn't.
02:39So it's up to you, whichever method you want to go for.
02:43And it's just so different person to person.
02:46Everyone has a completely different experience.
02:49So there's no way to tell really or predict what's going to happen.
02:52You just have to give it time.
02:53Time is the best healer for this one, unfortunately.
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