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.
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)
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)
Eyelid dermatitis to red face syndrome to cure: clinical experience of 100 cases
(https://www.jaad.org/article/S0190-9622(99)70118-0/pdf)
Corticosteroid addiction and withdrawal in the atopic: The red burning skin syndrome
(https://www.sciencedirect.com/science/article/pii/S0738081X02003656?via%3Dihub)
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]”
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".
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.
