TSW is NOT a social media trend – TSW RANT!

Today I read an article in the Washington Post entitled, What is Topical Steroid Withdrawal? You might be thinking, fantastic! That’s amazing coverage, but I’m left fuming at the journalists lack of research and general dismissive attitude towards people going through this.

Here’s why I hate this article, written by Tonya Russell – I’ve just tweeted here my blog response to her article… Feel free to contact here on Twitter also if you want to share your topical steroid withdrawal journey.

A recent social media trend – The five words used to begin this article left me short. A trend? A TREND? I think possibly the writer has just chosen the wrong word here but let me stress, this is NOT a trend. None of us want to have to spending our time raising awareness about the most debilitating, brutal, painful condition we have ever experienced. This isn’t going away. The word trend implies an upswing in posts, hashtags, social media coverage that will wane with time. Sadly this is just the tip of the iceberg when it comes to topical steroid withdrawal. It’s a storm waiting to break. It’s an avalanche teetering on the lip of a mountain. This condition has taken three and half years of my life away and I am still healing. Far from being a trend, this is a travesty. It’s a disaster! How dare you call it a trend. The numbers taking to TikTok and Instagram to document, share and learn is growing daily.
Stoking fears – The author also stresses that the rush of people with topical steroid withdrawal making social media posts, videos and blogs are causing fear, in fact stoking fear. We are NOT doing anything of the sort. Whilst this condition is terrifying and brutal, the fear for us is the damage of continuing to use a drug that is just making our skin worse and worse. I had poorly managed skin while using topical steroids and facing stronger and stronger medication, cancer drugs and new treatments that made me feel like a guinea pig. My skin could not sweat, it was thinned so badly in some places and the pigment was damaged badly. I do accept however that some of the videos and information being shared could be dangerous. None of us going through this are experts and as such we should never be pushing anyone towards any particular medical pathway. All we can do as patients is share our experience, not tell anyone to do something without medical guidance. TSW can be dangerous and lead to complications and infections so people should make sure they are very clear about what they’re doing and get medical help if they need it.
Relatively Rare – I strongly believe that all ‘chronic eczema’ patients are probably experience the TSW addition rebound flare and being dismissed by doctors who just give us more and tell us to apply more, more often, add on other meds like immunosuppressants. It’s heart-breaking to hear this being called rare. I fear it’s way more common than they realise and the rise in people sharing online should cause concern over this.
Thank you NEA – The link to the NEA which has details of fellow TSW warriors Linette Roungchun, Briana Banos and Kelly Tullos, ITSAN founder who is now healed from TSW., is the best bit about this whole article.
They spoke to a dermatologist and family medicine practitioner – whilst this guy recognises TSW as real, he then implies that it only happens when a person who is doing well decides to stop treating their skin. NO doctor! We are not doing well. We can hear our body screaming, our adrenals, lymph and digestive systems are broken because the suppressant medication we’ve been taking all our lives has told them to take a break. He says: the area previously treated can become severely inflamed, sometimes even worse than the rash that was being treated,” Fromowitz says. This guy does understand TSW, how quickly the skin rebounds and flares after ceasing treatment and how the skin becomes worse that it was to begin with.
Not all dermatologists agree on the causes of TSW nor how to diagnose it or that it even exists – ain’t that the truth. Never a truer word spoken. This needs to change. How can they call themselves dermatologists and yet refuse to read up about TSW so they can understand and diagnose it? It’s a failure of their duty to their patients.
Some doctors say it’s just an eczema flare up – That is just gaslighting at its finest. You just have eczema, you’ll never get better. you’ll have to use steroids for the rest of your life. I’ve heard it all before. What if we’re right though? Have doctors thought about that?
Research is in the early stages – Sadly that’s true. Despite studies noting TSW as early as 1979 no one is really studying, monitoring or following patients through TSW and no one is researching causes or treatments to help people through it except and huge cohort of TSW warriors.
The physicians we spoke with say that few people who use topical steroids will suffer from this complication – so enraging. Few people… FEW PEOPLE! Yet thousands are taking to social to try to get their voices heard.
Dermatologist Michael Rogers says – he has only once in his 40-year career seen a case of TSW. We as patients need to report TSW using the Yellow Card Scheme, sign the TSW petition and be seen by our doctors and dermatologists. I understand why people don’t want to do this but unless we go in front of medical professionals and ask for a diagnosis and tell them what we are going through, how can they know? It’s unpleasant in the extreme being dismisses, belittled and gaslit but I won’t stop going to see my dermatologist. They need to see us going through this to get the message. We need to bombard them with complaints. We need to be emailing, visiting, complaining in our droves because our voices are not being heard.
Can take months to heal – or a year in Dr Rogers’s patient – Sadly it can and does take far longer than that for some people. And if people are acknowledging a patient can heal from TSW they why not help people do this when clearly topical steroids are no longer working? Instead we get gaslit and dismissed…
People most at risk are those who have used topical steroids over an extended, uninterrupted periods and who increase the amount and potency of the medication over time are most susceptible – Well that’s most of us then. Put on them as children and then needing to continue to use them. You prescribe them to us so don’t you dare now say it’s our fault for over using.
The face was the part of the body most prone to developing a rash or peeling from TSW. – weirdly this does seem to be the case although it can affect the whole body. Mine was way worse on my face.
Avoiding using topical steroids is the only way to avoid TSW – I really don’t think they are a safe treatment. Everyone I’ve even spoken to either used them for a short time and stopped, or had a rebound. All those having rebound flare are given more, stronger… and the terror of developing TSW. It happened to everyone I know who is in TSW
Topical steroids are effective and inexpensive, and they have been used to treat eczema for more than 50 years – The fact that they have been around for my whole life and the treatment has not changed in that time says a lot. Severe eczema just didn’t exist before topical steroids were invented. We have created this monstrous condition with a so called magic healing cream but nothing that claims to cure comes without a cost.
There are nonsteroidal topical alternatives – If we’re talking about Protopic, steer well clear. It appeared to work well for me but on quitting the rebound was brutal. No medication should create a situation where a patient has a broken skin layer and is completely addicted to the cream. As I heal from TSW my skin is becoming so strong and has never been this good in my memory. Other treatments like Dupixent and JAK inhibitors are so much more expensive I can’t see them working as a solution. I also worry they will only work short term and potentially cause people further harm.
Stop long showers – well yes we all know that can help but those of us going through TSW can’t even have a shower of any length as the skin is so damaged and triggered by the water jets. I think we all need a bit more advice than stop having long showers.
Warmer water dries the skin – I’ve never found this to be the case for my skin. I really think it’s a myth. Hot baths are a dream for me and so I say, if you find it helps, do it. If it makes your skin worse don’t. It’s not really helpful advice because we’ve tired everything. Cold showers is not a cure for eczema..
For those with a severe case of eczema, he recommends even turning the water off, lathering up, then turning it back on only to rinse. – are you for real? I mean I do this myself anyway to save water and there is a point in the shower where I can start to get itchy., But that’s hardly ground breaking rocket science. It’s the tip of the iceberg but I’ll give you that Dr, yes that is good advice.
Wet wrap therapy can help the topical medications work better – But we don’t want to use the topical medications guys. I believe so strongly that topical steroids are not good for the skin so wet wrap treatment is just something i wouldn’t recommend. Unless of course you’d like to try out TSW? It could help with moisturising I guess but wet wrapping is cumbersome and time consuming. Does anyone else find this helps?
Who is the author Tonya Russell? She is a Philadelphia-based writer who covers mental health, culture and wellness. She has bylines in the New York Times, the Washington Post, SELF and more. She’s also a professional speaker who educates people on mental wellness in the workspace, cultural sensitivity and creating healthy boundaries. Russell is an avid runner, yogi and traveller. I will be sharing this blog with Tonya as I really feel we need journalists to understand the severity of this situation. She hasn’t mentioned ITSAN – the charity who helps and supports people through topical steroid withdrawal.

I don’t want to come across as angry but I am really really angry. We’ve seen so much great coverage of TSW over here in the UK and I thank everyone who helps us raise awareness of this condition but this problem, of being dismissed and gaslit just perpetuates when the so called experts are allowed to keep on telling us it’s rare, it’s safe if you use them correctly… We did use them as you directed.

If you want to write something to really help the situation with topical steroid withdrawal I suggest you find out what it’s really like for us, to be continually reading that our condition is rare and avoidable if we’d only used them right.

And do you know what? Even if some people have over used them, we want warnings on the medication that warn people that addiction is a potential outcome and that withdrawal is barbaric and could make your skin worse than when you started.

We want proper, robust peer reviewed and respected studies.

We want doctors and dermatologists to do the bloody work and research this condition because it’s not going away. It’s not a trend. It’s here to stay and it’s growing.

I don’t know how you can sleep at night with even a small worry that TSW is real. If you are a doctor or dermatologist, you’d better wake up and find out about this because you have to live with what you’ve done to us.

I’m not blaming anyone. No one wants TSW to happen. But I am blaming every one of you who has dismissed patients and not listened to them. Who have seen continual rebounding of eczema and continued to prescribe. Who prescribe topical steroids to babies. That’s on you!! and you really should be ashamed of yourselves.

In contrast, I also read a brilliant, well researched article this week by Habib Mbacke, Atopic Dermatitis are topical steroid based treatments on the out? Because, yes, yes yes i hope TS creams are on the way out as treatment. That would make my day.

I’d love to hear your views on this article…