No one knows how many people have topical steroid withdrawal (TSW). This condition is drastically underestimated because the vast majority of those experiencing topical steroid addiction (TSA) and TSW are undiagnosed, dismissed and end up going through the withdrawal process alone. Even the charity for TSW, ITSAN, don’t have figures for its prevalence.
The reason is that we just don’t know how many people would go into TSW because patients are moved onto other immunosuppressants and biologic medications which can mask TSW. And when our skin does get worse, inevitably our doctors tell us it’s just worsening chronic adult eczema and to get back on those topical steroids. It’s horrible using something that doesn’t really help, but does maintain a poor barely controlled state – knowing that a few days of not using and you’re skin is breaking bad!
TSW it not diagnosed early, if at all. Doctors don’t accept it’s happening. But if you google it and take a look on social media it’s alive and destroying lives across the world. Sadly it feels like no one is listening.
Google and social media #topicalsteroidwithdrawal research
A recent Yahoo News article by Tonya Russell says that, as of mid-March 2023, there had been more than 168 million views of TikTok videos with the hashtag #topicalsteroidwithdrawal. Tonya calls it a ‘recent social media trend’ which is incredibly infuriating. How anyone can view TSW as ‘trend’ is beyond me. None of us are doing this for fun, it happens to us regardless. You know I’d still be using the topical steroids if it was actually helping my skin. Being faced with regular cancer immunosuppressants that also didn’t work, but did break my immune system, was what forced me to go through this. I was in denial for years, praying I could just be OK and keep using them.
I’m not sharing a link to the article because it’s horrible, gaslighting and inaccurate.
There have been a number of studies done into topical steroid withdrawal, check out TSW studies. These date back to the 1970’s, so this isn’t a new phenomena. I believe doctors do know about it, but for some reason refuse to change their prescribing habits, praying that one of these new biologics or JAK inhibitors will help in the future.
Is TSW really that rare?
A study done by the MHRA concluded that “when used correctly, topical corticosteroid medicines are safe and effective treatments for skin disorders. However, if used very often or continually for a prolonged time, there have been reports of withdrawal reactions after they are stopped. A particularly severe type of topical steroid withdrawal reaction has been reported with skin redness (or a spectrum of colour changes or change in normal skin tone) and burning worse than the original condition.”
This makes me so angry, because our specialists prescribe us topical steroids over long periods of time and advise us that they are safe. Many of us experience worsening rebound flares, for which we are told to just use more of the creams. The problem is being caused by the way the drugs are prescribed, not by patient over used, although in some cases people admit they have used too much in a desperate bid to heal their skin.
What is Rare Patient Voice?
Rare Patient Voice, LLC connects patients and family caregivers of rare and non-rare diseases with opportunities to share their opinions with companies and researchers by participating in all types of research studies.
Their aim is:
HELPING PATIENTS AND CAREGIVERS SHARE THEIR VOICES.
As well as rewarding those who take part in research, they also conduct studies into different diseases so please do get involved to see if we can get them to choose TSW for their next research study.
To find out more visit their website at https://rarepatientvoice.com/
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Help raise awareness of TSW and any other rare condition you’d like to share!
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