TSW. Trichotillomania. Books. Life.

Monday, 9 December 2019

The TSW Database: The Media



It's funny, when you think something is all done and dusted, then realise there is still yet more to cover. This weekend it hit me that I had completely forgotten to include within my database all the stories that have been featured in the media on our condition.

This section of the database will mostly focus on all the articles currently out there on topical steroid addiction and topical steroid withdrawal because, apart from a couple of TV features and a podcast episode, there isn't much, and unfortunately the TV features so far have not offered an accurate representation of our condition.

With the stories in news outlets, I thought I would divide them by person instead of by publication or website because usually, once a story is picked up by one outlet, others follow suit. I have also shared any Instagram accounts connected to specific people's stories.

I hope you find it useful, and just like every other section of this database, I will be updating it as and when, but if I have missed any, please do let me know.

Cara x


Stories in news outlets

My story
(@carasnextchapter)
https://www.dailymail.co.uk/health/article-3395533/My-skin-covered-scales-shedding-house-Eczema-sufferer-develops-horrific-reaction-stops-using-steroid-cream.html

https://www.express.co.uk/life-style/life/633876/Extreme-eczema-red-raw-oozing-skin-Cara-Ward

https://www.mirror.co.uk/news/uk-news/woman-shed-whole-bodys-worth-7163601

https://www.cosmopolitan.com/lifestyle/news/a52060/cara-ward-topical-steroid-withdrawal/


Briana Banos
(@blackvelvetink & @preventable_doc)
https://www.dailymail.co.uk/health/article-3596321/Eczema-patient-filled-two-jars-dead-SKIN-suffering-severe-reaction-stopped-using-topical-steroid-creams.html

https://www.mirror.co.uk/news/world-news/human-scab-woman-shed-enough-7994743

https://metro.co.uk/2016/05/18/woman-fills-jars-with-facial-skin-after-she-stops-using-acne-cream-5889873/


Laura Stageman 
(@stagey)
https://www.dailymail.co.uk/health/article-3350782/Eczema-patient-spent-20-hours-day-bath-soothe-flaking-skin-suffering-severe-reaction-stopped-using-steroid-creams.html

https://www.mirror.co.uk/news/real-life-stories/my-skin-started-falling-off-6973394

https://www.catersnews.com/stories/real-people/stunning-woman-left-shedding-like-a-snake-from-rare-condition/


Jonathan Rowe
(@tsw_jr)
https://www.dailymail.co.uk/health/article-7651067/Eczema-stricken-man-reveals-shocking-transformation-pictures-ditching-steroid-medication.htmlAlice

https://www.thesun.co.uk/fabulous/10282097/eczema-depriving-skin-moisture-steroids-reaction/

https://metro.co.uk/2019/11/06/man-struggled-eczema-face-years-treating-condition-drying-skin-11049982/

https://www.ladbible.com/news/uk-man-with-eczema-shows-transformation-after-ditching-steroid-medication-20191105

https://www.unilad.co.uk/health/man-with-severe-eczema-shares-amazing-transformation-after-ditching-steroid-medication/


Alice Burleigh
(@tsw_alice)
https://www.dailymail.co.uk/health/article-7763187/Shocking-pictures-eczema-stricken-student-steroid-withdrawal.html

https://www.thesun.co.uk/fabulous/10496945/slept-mittens-clawing-skin-addiction-eczema-cream/

https://www.ladbible.com/news/uk-students-eczema-clears-after-she-gives-up-steroids-20191206

https://www.foxnews.com/health/woman-severe-eczema-steroid-cream

https://heraldpublicist.com/shocking-before-and-after-pictures-of-eczema-stricken-student-with-steroid-withdrawal/


Hayley Woolcock
(@tswdailywithhayley)
https://www.dailymail.co.uk/femail/article-7578989/Perth-woman-eczema-claims-topical-steroids-caused-hair-FALL-left-skin-blistering.html

https://whatsnew2day.com/a-perth-woman-with-eczema-claims-that-topical-steroids-caused-her-hair-to-fall-and-the-skin-to-show-blisters


Abigail Lowe




Nicola Jones






Lucy Mcdermott



Irene Tempelaars
(@itchy_irene)
https://www.dailymail.co.uk/health/article-7075663/Woman-left-horrific-steroid-withdrawal-syndrome-doctors-prescribed-creams-20-years.html

https://www.thesun.co.uk/fabulous/9145430/eczema-woman-itchy-flaky-skin-ditching-steroid-cream/


Louise King
(@louigi.skin)
https://www.dailymail.co.uk/health/article-6755475/Eczema-sufferer-lizard-skin-intimate-boyfriend-ditching-steroid-cream.html

https://www.thesun.co.uk/fabulous/8515501/eczema-lizard-addictive-steroids-killed-sex-life/

https://metro.co.uk/2019/02/28/woman-with-eczema-left-with-lizard-skin-after-deciding-to-stop-using-steroid-cream-8776682/

https://www.portsmouth.co.uk/health/hampshire-woman-left-looking-like-a-lizard-after-weaning-herself-off-steroid-creams-used-to-treat-eczema-1-8829501


Harriet Hammond
(@tswharriet)
https://www.dailymail.co.uk/health/article-6741981/Charity-worker-withdrawal-eczema-creams-admits-intimate-boyfriend.html

https://www.thesun.co.uk/fabulous/8503013/eczema-reaction-skin-peeling-ruined-sex-life/

https://www.thescottishsun.co.uk/fabulous/3922685/eczema-cream-skin-cream-sex-life-ruined/

https://metro.co.uk/2019/02/25/womans-skin-fell-off-broke-huge-blisters-became-addicted-eczema-cream-8734845/


Laurie Williams
(@laurieskinstory)
https://www.dailymail.co.uk/health/article-6829785/Eczema-sufferer-endures-flaking-skin-ditching-steroid-creams.html

https://www.thesun.co.uk/fabulous/8679597/eczema-skin-shed-flakes-steroid-cream/

https://www.mirror.co.uk/news/uk-news/woman-stops-using-steroid-cream-14168079

https://metro.co.uk/2019/03/21/woman-says-her-severe-eczema-caused-her-skin-to-flake-off-on-train-passengers-8960188/


Holly Broome
(@tsw_hollybee)
https://www.dailymail.co.uk/health/article-7676359/Eczema-stricken-woman-makes-recovery-ditching-steroid-creams-showering-WEEK.html

https://www.thesun.co.uk/fabulous/10330975/cure-agonising-eczema-stop-treatment-withdrawal/

https://www.unilad.co.uk/health/woman-with-extreme-eczema-makes-incredible-recovery-after-ditching-steroid-cream-and-showers/

https://www.tyla.com/healthy/real-life-eczema-cure-topical-steroid-withdrawal-addiction-no-moisture-treatment-20191113


Zainab Danjuma
(@tsw_beezeebuzz)
https://www.dailymail.co.uk/health/article-6035163/Eczema-suffer-reveals-photo-diary-painful-10-month-journey-ween-topical-steroids.html

https://www.getthegloss.com/article/eczema-sufferer-on-topical-steroid-withdrawal

https://www.stylist.co.uk/beauty/skincare/eczema-topical-steroid-withdrawal/793373


Keri Campbell












Eve


Daisy Malin
(@daisymalin_skin)








Stephanie Davis
(@ stephaniedavis88)






Kristi Chun







Georgianna Thorne
(@georgit24)
https://www.dailymail.co.uk/femail/article-9740347/Woman-reveals-steroid-creams-prescribed-eczema-left-skin-oozing-burnt-cracked.html

Stephanie Shaw
(@tswsteph)
https://www.dailymail.co.uk/health/article-6085787/Eczema-sufferer-addicted-steroid-creams-reveals-suicidal.html

https://www.mirror.co.uk/news/uk-news/eczema-sufferers-hell-addiction-prescribed-13118634

https://www.thescottishsun.co.uk/news/3100216/eczema-sufferers-agony-after-prescribed-steroid-cream-addiction-leaves-her-bedridden-and-jobless/


Frances Wang
(@franceswangtv)
https://www.dailymail.co.uk/health/article-7656791/CBS-anchor-returns-work-treating-skin-condition-left-painful-acne-rashes.html

https://www.dailymail.co.uk/health/article-7521905/CBS-anchor-reveals-treating-eczema-steroid-cream-caused-develop-new-skin-condition.html

https://www.dailymail.co.uk/video/health/video-2043496/Video-Anchor-Frances-Wang-shows-eczema-face-covered-uncovered.html


https://www.today.com/health/tv-anchor-frances-wang-opens-about-painful-skin-condition-t163638

https://people.com/health/cbs-news-frances-wang-dealing-with-painful-skin-condition-im-very-self-conscious-about-it/

https://people.com/health/cbs-miamis-frances-wang-says-skin-is-healing-after-taking-time-off/

https://www.msn.com/en-us/health/voices/what-its-like-to-have-bad-skin-and-work-on-tv/ar-BBWqnP1

https://www.yahoo.com/lifestyle/reporter-returns-to-tv-after-battling-severe-skin-condition-there-is-beauty-in-vulnerability-203225547.html

https://www.health.com/condition/skin-conditions/frances-wang-skin-condition

https://www.womenshealthmag.com/health/a29308180/frances-wang-cbs-face-rash-perioral-dermatitis/

https://www.miamiherald.com/news/health-care/article236204043.html

http://breakingnews.ws/my-face-blew-up-cbs-news-anchor-frances-wang-reveals-how-treating-her-eczema-with-steroid-cream-left-her-with-painful-acne-and-rashes.html

https://www.adweek.com/tvspy/miami-anchor-returns-to-tv-after-taking-time-off-to-heal-skin-condition/217709/

https://miami.cbslocal.com/2019/11/22/cbs4-frances-wang-skin-condition-awareness-helping-others-perioral-dermatitis/


Aramide


Rhianna Burns



Megan Chrome









Nicola Barton (@nicola_skin)


Kathryn Hinton


Julianna Permitin


Jake Killeen





Scarlet September




Lyndsie Wright
https://www.ladbible.com/news/news-woman-left-smelling-like-old-pennies-after-skin-cream-disaster-20211024

https://www.mirror.co.uk/news/us-news/woman-26-left-smelling-like-25285426


Maria Marzaioli
(@tsw_eczemaria)
https://www.dailymail.co.uk/health/article-6927041/Woman-43-claims-BEER-triggered-eczema.html

https://www.mirror.co.uk/news/uk-news/womans-eczema-flare-up-from-14338188

https://www.thesun.co.uk/fabulous/8873478/woman-skin-hot-fry-egg-eczema-flare/

https://www.ladbible.com/news/uk-womans-eczema-so-bad-she-could-have-fried-egg-on-hot-irritated-skin-20190416


Emilie Dunn
(@emilie_x_d)
https://metro.co.uk/2019/08/22/painful-eczema-leaves-woman-unable-to-wear-a-bra-or-underwear-after-coming-off-steroid-creams-10611713/

https://www.scotsman.com/news/woman-could-not-wear-bra-or-socks-for-more-than-two-years-because-of-skin-condition-1-4989052

https://www.hulldailymail.co.uk/news/health/eczema-steroid-withdrawal-pictures-shocking-3227935

https://www.thesun.co.uk/fabulous/11847299/woman-disgusting-stranger-primark-eczema-cream-cure/

https://metro.co.uk/2020/06/12/lifelong-eczema-sufferer-called-disgusting-passers-saved-8-wonder-cream-12842239/


Catherine Provenҫal
(@purelycatherine)
https://www.thesun.co.uk/fabulous/9877960/mum-cured-eczema-ditching-steroid-creams/

https://www.mirror.co.uk/news/uk-news/mum-cured-painful-eczema-after-19637018\\

https://twnews.co.uk/gb-news/mum-cured-painful-eczema-after-ditching-creams-she-d-used-for-25-years


Nina Ajdin
https://www.dailymail.co.uk/health/article-6230513/Woman-28-cruelly-called-MONSTER-skin-turned-red-scaly-hair-fell-out.html

https://www.dailymail.co.uk/video/news/video-1774218/Video-Woman-battles-ten-year-steroid-cream-addiction-skin-burn.html

https://www.thesun.co.uk/fabulous/7400661/womans-skin-burns-smells-like-its-rotting-and-her-hair-falls-out-after-she-became-addicted-to-eczema-cream/

https://au.news.yahoo.com/woman-called-monster-bullies-rare-condition-made-skin-burn-hair-fall-022736487.html


Douglas Maddy (talking about his son, Charlie)
https://www.dailymail.co.uk/femail/article-4184846/Dad-says-son-left-bleeding-steroid-cream.html

https://www.thesun.co.uk/living/2861126/toddler-addicted-to-eczema-cream-suffers-agonising-red-raw-skin-after-coming-off-treatment/


Melanie Lynch
https://www.dailymail.co.uk/health/article-3937474/Extreme-eczema-sufferer-looked-like-monster-quitting-30-year-steroid-cream-addiction-clear-skin-time-life.html

https://www.mirror.co.uk/news/uk-news/eczema-sufferer-who-felt-like-9262871

https://www.thesun.co.uk/living/2188033/mums-skin-left-oozing-peeling-and-burning-after-she-ditched-eczema-cream-and-suffered-withdrawal-for-3-years/

https://pulptastic.com/melanie-lynch-eczema/


Samantha Saunders







Sofia love


https://www.dailyadvent.com/gb/news/010ab1cffc49c90f5ba8136f797cbbab-Steroid-creams-left-my-skin-as-thick-as-an-elephant-and-gave-me-months-of-insomnia


Anita Wong







Laura Barnett
https://www.dailymail.co.uk/health/article-6876099/Dental-nurse-45-left-feeling-like-zombie-ditching-steroid-creams-VACCUM-bed.html

https://metro.co.uk/2019/04/02/woman-felt-like-zombie-skin-peeled-off-addiction-eczema-cream-9091738/


Colby Chun
https://www.dailymail.co.uk/health/article-6614935/Toddler-overcoming-horrific-reaction-steroid-creams.html

https://www.thesun.co.uk/fabulous/8243612/toddler-reaction-eczema-cream-scream-oozing-skin/

https://www.mirror.co.uk/news/world-news/baby-left-screaming-agony-after-13886180

https://metro.co.uk/2019/01/21/baby-left-screaming-pain-steroid-cream-left-covered-oozing-scabs-8368787/

https://www.foxnews.com/health/hawaii-toddler-with-eczema-suffers-severe-lobster-red-oozing-skin-reaction-to-steroid-cream

https://people.com/health/toddlers-eczema-turns-into-oozing-scabbed-skin-on-every-inch-of-body-due-to-steroid-cream/







Theo Mills





Elin Wade
https://www.dailymail.co.uk/femail/article-9196789/Woman-severe-eczema-steroid-withdrawal-claims-doctors-laugh-her.html?ito=email_share_article-top


Gemma Day
https://www.dailymail.co.uk/health/article-6158391/Bride-24-severe-eczema-woke-week-wedding-eyes-swollen-shut.html

https://www.thesun.co.uk/fabulous/7237232/bride-skin-burned-steroid-cream-addiction/


Katy Jackson
https://www.dailymail.co.uk/health/article-6070255/Mother-two-looked-like-acid-attack-victim-ditching-steroids.html

https://www.thesun.co.uk/fabulous/7038747/mum-quit-steroid-cream-psoriasis-skin-burns-acid-attack-victim/


Danica Jaldbert
https://www.dailymail.co.uk/health/article-6859921/Eczema-sufferer-24-fell-deep-depression-ditching-steroid-creams.html


Jasmine Clarke
https://www.dailymail.co.uk/femail/article-5104377/Woman-suffers-excruciating-skin-condition.html

https://www.dailyrecord.co.uk/news/creams-beat-eczema-left-skin-9613003


Josephine Raneses (the article says that she cured her eczema through diet, but to me it seems like it's because she stopped using topical steroids ...)
https://www.dailymail.co.uk/femail/article-6062727/Yoga-teacher-treated-eczema-plant-based-diet.html


Ruth Holroyd
https://www.dailymail.co.uk/femail/article-8203783/Woman-says-eczema-look-twenty-years-older.html


Steph Meredith
https://www.tyla.com/life/real-life-woman-eczema-transformation-topical-steroid-withdrawal-nhs-guidance-20200413


Imogen Tingay
https://www.thesun.co.uk/fabulous/11930834/eczema-bad-severe-hermit-embarrassed-creams-skin-condition/


Thalia Daw


Misty Rowe-Elliot
https://www.dailymail.co.uk/femail/article-8632359/Mother-eczema-bad-turned-jobs-healed-naturally-vegan-diet.html?ito=facebook_share_fbia-bottom




https://www.itv.com/news/2023-09-25/people-with-oozing-pores-and-burning-skin-turn-to-tiktok-after-nhs-steroid-hell


Television coverage

'Woman's Life Destroyed by Extreme Eczema' (Briana Banos featured on the American TV show, The Doctors in 2015)

https://www.youtube.com/watch?v=-cATUV82W0E

Louise King's story featured on Quest Red's, The Bad Skin Clinic in 2019
https://www.facebook.com/questredtv/videos/364179727592077/


Podcasts

Inside Health 'Social prescribing, Topical steroid withdrawal, Pulmonary arterial hypertension' (Two doctors discuss topical steroid withdrawal 'syndrome' <<<<their words. Relevant section starts approximately 10 minutes in) 
https://www.bbc.co.uk/sounds/play/b0bd8h7b

The 'Healthy Skin Show' featuring Louise King's journey with TSW
https://www.skinterrupt.com/topical-steroid-withdrawal-story/

Another episode of 'The Healthy Skin Show' with Kathryn Tullos with information on what TSW is
https://www.skinterrupt.com/topical-steroid-withdrawal-crazy-symptoms/


For Youtube & Facebook, click (here).

For Blogs & Websites, click (here).

For TikTok & Instagram accounts, click (here).
For Medical Journals, click (here).

For Things to Potentially Avoid During TSW, click (here).

For Books Books Books, click (here).

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Saturday, 7 September 2019

The TSW Database: Medical Journals



When it comes to TSW, as far as I'm concerned, it's simple: stop using steroids, go through an horrific drug withdrawal and at the end of it you'll get better - sorted, But ask me about any medical journals or articles on our condition and I'm clueless. It's not that I don't have any interest in them, I just don't know where to start. Thankfully, I don't have to because someone within our incredible community got in touch recently offering to share their collection of medical journals and papers etc. with me for my TSW database. They have been collated from all over the internet with all but eight of them available for free.

I have to say, whilst reading over the papers in preparation for this post, it has made me angry. Even though I obviously felt like this before, within the case studies and findings written in black and white is pretty damning evidence that corticosteroid addiction exists and we have a very serious problem on our hands (literally). These drugs are creating something much worse than whatever they were used to treat in the first place. Something has got to be done, and fast.

I would like to give a huge thank you to Jordan Graham for making this post possible. At the bottom of the page, he has also created something quite fabulous, so read on for more information.

This community continues to amaze me and together we have the ability to create true change.
Cara x


General papers, articles and journals 

Topical corticosteroid withdrawal
(https://www.dermnetnz.org/topics/topical-corticosteroid-withdrawal/)
A general overview of TSW: what it is, the causes, symptoms, complications, diagnosis, treatment, prevention and outlook.

Topical steroid addiction in atopic dermatitis
(https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4207549/)
A general overview of topical steroid addiction, describing the symptoms and features of the condition which are based on the treatment of many cases of it. Written to offer a better understanding of TSA.

A prospective study of atopic dermatitis managed without topical corticosteroids for a 6-month period
A group of doctors studied a group of patients with atopic dermatitis (AD) to "assess the clinical outcomes in patients with AD who did not use TCS for 6 months and then compared our results with an earlier study by Furue et al which considered AD patients using TCS over 6 months". 

Cortisol Homeostasis in the Epidermis is Influenced by Topical Corticosteroids in Patients with Atopic Dermatitis
(https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5527739/)
A paper questioning whether topical corticosteroids influence the cortisol homeostasis in the skin. (I have no idea what I'm saying by the way).

Histological and Immunohistological Findings Using Anti-Cortisol Antibody in Atopic Dermatitis with Topical Steroid Addiction.
(https://link.springer.com/article/10.1007%2Fs13555-016-0096-7)
"The purpose of this study was to elucidate histological and immunohistological characteristics of TSA using anti-cortisol antibody".

Facing up to withdrawal from topical steroids
(https://journals.lww.com/nursing/Fulltext/2007/09000/Facing_up_to_withdrawal_from_topical_steroids.46.aspx)
*Link to download the PDF above* The article shares findings that by using topical corticosteroids for longer than two weeks can cause what they call, "steroid rosacea". It discusses how to treat it and how best to support a patient through the inevitable withdrawal. 

Rational and Ethical Use of Topical Corticosteroids Based on Safety and Efficacy
(https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3401837/)
An in-depth look at how best to use topical corticosteroids after a rise in the "improper use of these drugs by dermatologists, general physicians, and patients". It is a fascinating read. 

Systematic Review of the Topical Steroid Addiction and Topical Steroid Withdrawal Phenomenon in Children Diagnosed With Atopic Dermatitis and Treated With Topical Corticosteroids
(https://www.nursingcenter.com/pdfjournal?AID=4337200&an=01412499-201709000-00002&Journal_ID=849729&Issue_ID=4337195)
This study looks at the process of topical steroid withdrawal in children with data taken from medical literature, social media sites and blogs.

A systematic review of topical corticosteroid withdrawal (‘‘steroid addiction’’) in patients with atopic dermatitis and other dermatoses
(https://nationaleczema.org/wp-content/uploads/2015/04/Systematic-Review-TSA.pdf)
A review written by "the National Eczema Association Task Force" after the increasing rise in patients asking about topical steroid addiction due to the the "growing presence of social media dedicated to this topic" and discusses, "the current evidence regarding addiction/withdrawal".

Side-effects of topical steroids: A long overdue revisit 
(http://www.idoj.in/article.asp?issn=2229-5178;year=2014;volume=5;issue=4;spage=416;epage=425;aulast=Coondoo)
*Link to download the PDF above* Another review on topical steroids after, "rising instances of abuse and misuse leading to serious local, systemic and psychological side effects".

Topical steroid addiction in atopic dermatitis
(https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4207549/)
An article detailing the symptoms of, as they call it, "topical steroid addiction or red burning skin syndrome, based on the treatment of many cases of the illness". In this study, they look to shed some light in order to, "better understand the illness".

Topical corticosteroid withdrawal in a pediatric patient
(https://www.jaadcasereports.org/article/S2352-5126(17)30118-2/fulltext)
A report by three doctors from Portland, Oregon discussing the side effects of topical corticosteroids (TCS) and TCS withdrawal and how rarely it is documented in children. They highlight the case of a 14-year-old girl in their emergency department (ED) "with a pustular dermatosis of the face that arose after abrupt discontinuation of TCS". 

Topical corticosteroid addiction and phobia
(http://www.e-ijd.org/article.asp?issn=0019-5154;year=2014;volume=59;issue=5;spage=465;epage=468;aulast=Ghosh)
The article discusses topical steroid addiction and topical corticosteroid phobia which has been reported "particularly among parents of atopic children".

Utsättningsreaktioner efter användning av lokala kortikosteroider
(https://medibas.se/handboken/kliniska-kapitel/hud/tillstand-och-sjukdomar/erytem/utsattningsreaktioner-efter-anvandning-av-lokala-kortikosteroider/)
The Swedish website Medibas has officially listed TSW on their database as a risk of using topical steroids. 

Growth impairment in children with atopic eczema
This discusses growth impairment in children with atopic eczema, and those also using topical corticosteroids.

A Call to Retire Systemic Corticosteroids for Pediatric Atopic Dermatitis
An excellent paper, calling for dermatologists to stop using ora steroids in the treatment of eczema.

Topical steroid withdrawal reactions: a review of the evidence
“The authors concluded that topical steroid withdrawal reactions occur in children and can result from discontinuing topical steroids used for as little as 2 months.”

Topical corticosteroids: information on the risk of topical steroid withdrawal reactions
“Patient risk factors: Topical steroid withdrawal reactions are thought to occur after prolonged, frequent, or inappropriate use of moderate to high potency topical corticosteroids. Topical steroid withdrawal reactions can develop after application of a topical corticosteroid at least daily for longer than a year.[footnote 1][footnote 4][footnote 5][footnote 6] In children they can occur within as little as 2 months of daily use.[footnote 5] People with atopic dermatitis are thought to be most at risk of developing topical steroid withdrawal reactions. [footnote 1]”

Topical Steroid Withdrawal is a Targetable Excess of Mitochondrial NAD+
Whilst this isn't peer reviewed yet, the National Institute of Health (NIH), based in the US, conducted a pilot study about TSW in 2023 by analysing data from patients with TSW. This is very promising indeed.


Studies and medical journals etc. by the Australian doctor, Dr Belinda Sheary

Topical Steroid Withdrawal: A Case Series of 10 Children
(https://www.medicaljournals.se/acta/content_files/files/pdf/99/6/5412.pdf)
A long-term study written by Dr. Belinda Sheary on TSW in children from Australia, and according to ITSAN, is by far the most comprehensive study on TSW that they have seen to date.

Topical corticosteroid addiction and withdrawal – An overview for GPs
(https://www.racgp.org.au/download/Documents/AFP/2016/June/AFP-June-Clinical-Sheary.pdf)
A clear and well-written overview of our condition by the goddess that is Belinda Sheary.

Steroid Withdrawal Effects Following Long-term Topical Corticosteroid Use
(https://journals.lww.com/dermatitis/Fulltext/2018/07000/Steroid_Withdrawal_Effects_Following_Long_term.8.aspx#pdf-link)
The goddess is back with a study to, "examine the demographics and outcomes in adult patients who believe they are experiencing TSW following discontinuation of chronic TCS overuse" between January 2015 and February 2018.

Topical corticosteroid addiction and withdrawal in a 6 year old
(https://www.publish.csiro.au/HC/pdf/HC16049)
A case study by Dr Sheary of a "six-year-old girl with intractable eczema who was diagnosed with TCS addiction after inadvertent TCS withdrawal" and made a full recovery after 14 months with only "mild residual eczema symptoms".


Papers and studies by Dr Marvin Rapaport (unfortunately not available for free)

Corticosteroid addiction and withdrawal in the atopic: the red burning skin syndrome
(https://www.sciencedirect.com/science/article/pii/S0738081X02003656?via%3Dihub)
A detailed paper on our condition and the withdrawal process.

Drug companies, dermatologists, and the patient
(https://www.jaad.org/article/S0190-9622(06)02270-5/fulltext)
A fascinating paper into the concerns expressed by dermatologists over the increasing involvement of pharmaceutical companies and their influence in the medical community and beyond.

Eyelid dermatitis to red face syndrome to cure: Clinical experience in 100 cases
(https://www.jaad.org/article/S0190-9622(99)70118-0/pdf)
A detailed study into all eyelid dermatitis patients seen over an 18-year period which revealed the reason for their prolonged condition was an, "addiction to the use of topical or systemic corticosteroids". 

Serum Nitric Oxide Levels in "Red" Patients: Separating Corticosteroid-Addicted Patients From Those With Chronic Eczema
(https://jamanetwork.com/journals/jamadermatology/article-abstract/480695)
This is a very wordy and scientific paper that makes it blindingly obvious that steroid addiction exists. 

Rebound Vasodilation From Long-term Topical Corticosteroid Use
(https://jamanetwork.com/journals/jamadermatology/article-abstract/410943?resultClick=1)
Another very wordy and scientific paper where Dr Rapaport suggests another approach to the "'problem' of atopy before instituting treatments with new medications".

The red skin syndromes: corticosteroid addiction and withdrawal
(https://www.tandfonline.com/doi/full/10.1586/17469872.1.4.547)
Another detailed paper by Dr Rapaport after treating over 1500 patients who were previously diagnosed with "worsening eczema" and finding instead that their problems were caused by an addiction to topical steroids and the only "cure" was "total cessation of these medications, requiring at times 1–2 years attended by multiple flares of the rash". It breaks down the symptoms, why they happen, and how best to treat it.

Prolonged Erythema After Facial Laser Resurfacing or Phenol Peel Secondary to Corticosteroid Addiction
(https://journals.lww.com/dermatologicsurgery/Abstract/1999/10000/Prolonged_Erythema_After_Facial_Laser_Resurfacing.7.aspx)
The objective of this paper is to "describe patients whose postoperative care consisted of prolonged use of topical corticosteroids and to assess the outcome of cessation of this medicine" as "the use of topical corticosteroid preparations postoperatively in peel and resurfacing patients is believed to be a major cause of prolonged erythema"<<< thought I'd leave the paper to explain what it is rather than me trying (and failing ...) to do so.


Another medical review (also unfortunately not free)

Misuse and abuse of topical steroids: implications
(https://tandfonline.com/doi/full/10.1586/17469872.2.1.31)
This medical review "discusses the concept of ‘misuse and abuse’ of topical steroids, gives an overview of topical steroids, differentiates ‘misuse’ as opposed to ‘abuse’ of application of topical steroids as they occur in different settings and provides a schematic algorithm for the appropriate and optimal application of topical steroids". Sometimes it really is easier to let the article explain what it is than me trying to ...


Click (here) for Jordan's amazing Dropbox featuring all the journals and documents etc. included in this post.

Also, I know I promised you something fabulous ... and so, from the medical journals and reports etc. shared above, Jordan has created the list below taking data from the journals etc. to shed some light on how long the withdrawal process might take. This is obviously not a guarantee and as you know already I believe we are all different, but still a fascinating read. PLEASE CAN SOMEONE JUST STUDY THIS PROPERLY ALREADY.


Topical Steroid Withdrawal Recovery Time According to Medical Papers Only

*Last updated: 06/09/19*
Please Remember – Everybody’s recovery time is individual. This research is not designed to predict your recovery time but may give you an idea of withdrawal time to expect. After the withdrawal process is complete, you may still have your pre-existing skin condition.

- Jordan Graham

Dr Belinda Sheary - Topical Steroid Withdrawal: A Case Series of 10 Children
(https://www.medicaljournals.se/acta/content/html/10.2340/00015555-3144)

Case 1: 22 months
Case 2: 29 months
Case 3: 28 months
Case 4: 30 months
Case 5: Not clearly documented 
Case 6: May have re-applied steroids 
Case 7: 28 months
Case 8: 24 months
Case 9: 18 months
Case 10: 29 months
Total of 208 months ÷ 8 patients = 26 months
According to this research paper, the average recovery time for 8 children was 26 months.

Statements made from Dr Marvin Rapaports medical papers

The red skin syndromes: corticosteroid addiction and withdrawal
(https://www.tandfonline.com/doi/full/10.1586/17469872.1.4.547)

  • Cure occurred in all patients after total cessation of these medications, requiring at times 1-2 years attended by multiple flares of the rash.
  • Cure occurred anytime from 4 months to 2 years, depending on the how long they had used steroid creams in the past.
  • Cure with total cessation of rashes, total cessation of flares and total cessation of any and all therapy will occur in 6-24 months.
  • If the addiction occurred over many years, then the withdrawal phase can go on for 12-24 months. The distant areas do not manifest rash anymore, only the original long term, steroid treated sites recur but with milder eruptions.
  • Withdrawal from the corticosteroids typically leads to total cure but can take 6 to 24 months for complete resolution.

Eyelid dermatitis to red face syndrome to cure: clinical experience of 100 cases
(https://www.jaad.org/article/S0190-9622(99)70118-0/pdf)

  • The length of ‘normal time’ between flares usually increased and the redness became more short-lived. Many of the patients required 6 to 18 months to clear totally, experiencing 3 to 12 fares.
  • Clearing, with no flares for at least 4 to 6 weeks, occurred between 2 and 30 months after corticosteroid cessation for the atopic patients and 1 to 19 months for the seborrheic dermatitis patients. The ‘other’ category of 9 patients took 2 to 7 months to clear.

Corticosteroid addiction and withdrawal in the atopic: The red burning skin syndrome
(https://www.sciencedirect.com/science/article/pii/S0738081X02003656?via%3Dihub)

  • Unfortunately, the time required for corticosteroid withdrawal mirrored the time over which they had originally been applied and was often protracted.
  • The atopic individuals in our series had the most difficult and protracted courses after steroid cessation, whereas the nonatopic individuals usually cleared within 2 to 3 months.
  • For facial rash, withdrawal periods ranged from 2 months to 2.5 years. Rebound vasodilation from long term topical corticosteroid use
  • In many patients, several flares and rebounds occurred during the withdrawal phase, which lasted from 1 to 2 years. All patients needed no further treatment, and there was no recurring rash. Lifestyle returned to pre-addicted level. Among my patients, only a few exhibited the underlying eczema again, usually years later, as only isolated patches during winter. Lubrication and UV light irradiation were used without corticosteroids, and resolution quickly occurred.

For Youtube & Facebook, click (here).

For Blogs & Websites, click (here).

For TikTok & Instagram accounts, click (here).
For The Media, click (here).

For Things to Potentially Avoid During TSW, click (here).

For Books Books Books, click (here).

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Friday, 6 September 2019

Month 75 // Time


This was completely unplanned but yesterday I realised that today marks 75 months since I began my journey with topical steroid withdrawal, and not one for missing any kind of milestone, I just had to document it in a small way at least.
Left - Monday 29th July 2013 (nearly 2 months into TSW).
Right - yesterday! Give it time.

I genuinely can't believe so much time has passed, and yet at the same time, it feels like a lifetime ago. Another person ago. Now, I'm so glad I wrote a book about it all because, as predicted, I can't remember what happened. When you are in pain, time seems to stand still and those precious moments of bliss pass by too fast. That is just the way it is. Like me during secondary school. I was desperately unhappy and at the time, I felt like I would be stuck as a teenager forever, but now as an adult, time seems to speed up when I want to hold onto every single moment. 

Time. Time. Time. That is all it boils down to. Not enough of it - too much of it. Never just right. 

I go on about time because topical steroid withdrawal is the ultimate waiting game, although you end up winning more than you ever thought was possible: skin freedom.

Give it time.
Cara x
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Sunday, 1 September 2019

The TSW Database



After wanting to do this for well over two years, I am pleased to be able to share my TSW database (of sorts ...) with you all. A while ago, I realised there was nowhere that listed every resource on our iatrogenic condition online ... and so I decided I wanted to change that. We now have so much information at our disposal, and yet at the same time, so little, because it can be overwhelming knowing where to start, especially if you have only just begun your journey with topical steroid withdrawal. I have split this up into three separate categories/posts: Blogs & Websites, YouTube & Facebook and TikTok & Instagram accounts.

For Blogs & Websites, I think I have pretty much listed every single TSW blog out there. There are naturally very few TSW-specific websites, but I've done what I can to put what little we have on our condition under one roof.

For YouTube & Facebook, I think I have found *most* of the YouTube videos and channels dedicated to our condition, then shared what I believe to be all the Facebook groups and pages currently available.

For TikTok & Instagram accounts, I have listed (I think) every single Instagram account of those who have been through, or are currently going through, TSW. ***Then on 18th July 2021, I also added to the post a list of all the TSW-related TikTok accounts and videos.***

Every month I will be updating the pages, but at the rate Instagram accounts especially are popping up, this will be out of date tomorrow. I will do my best to keep adding to the lists when I can but please let me know if I have missed any!

***An update, written on Saturday 7th September 2019***
After putting up my database last week, someone within our incredible community got in touch offering to share their collection of medical journals and papers etc. with me for my database. The link to the journals can be found below.

***Another update, written on Monday 9th December 2019***
Last weekend, it hit me that I had completely forgotten to include within my database all the stories that have been featured in the media on our condition - so today, I did exactly that. The link to all media articles etc. can be found below.

***Another update, written on Sunday 24th January 2021***
I had been hearing about many things which could potentially be an issue for anyone going through TSW so I decided to add a new section to the database listing them all. They are things I wish I had known during my own withdrawal. The link to the things to potentially avoid during TSW can be found below.

***Another update, writen on Saturday 12th February 2022***
After seeing how many books that are about, or related to, TSW now, I thought it was about time that they were collated and put into one post. The link to Books Books Books can be found below.


For Blogs & Websites, click (here).
For Youtube & Facebook, click (here).
For TikTok & Instagram accounts, click (here).
For Medical Journals, click (here).
For The Media, click (here).
For Things to Potentially Avoid During TSW, click (here).
For Books Books Books, click (here).


I hope you find the posts useful and it makes navigating our condition a little easier.

Cara x
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