Topical steroid withdrawal occurs when a patient ceases the application of topical steroid creams on their skin. When this happens, the patient undergoes a withdrawal process which affect his or her physical, psychological and hormonal systems.
Before we go deep into the nitty gritty, here are some key resources to put this topic in context. (and to give it some legitimacy)
Research and Resources on Topical Steroid Withdrawal
Paper titled “Review: Steroid Addiction“. This paper provides a great general review on the adverse effects of topical steroids. The paper talks about studies that show some insight into the mechanism of steroid rebound phenomenon. The paper concludes that such steroid rebound phenomenon (what we call as Topical Steroid Withdrawal) can occur in any chronic dermatoses which has been under long term treatment with topical steroids. This is the paper to read if you are prescribed with any types of topical steroids.
- Paper titled “Adverse effects of Topical Glucocorticosteroids“. This is another extensive paper used to describe the potent adverse effects of topical steroids – Causing Atrophic changes, infections, ocular changes, pharmacologic effects and miscellaneous changes. More details are written in this paper. If you have been using topical steroids for a long period of time, some pictures contained in this paper will resemble “eczema” symptoms and may shock you into realization that your skin problems could be due to the effects of topical steroids themselves.
Paper titled “The red skin syndromes: corticosteroid addiction and withdrawal“. This paper has colored pictures to describe some of the withdrawal effects patients go through upon topical steroid withdrawal. This paper also studies the levels of Nitric Oxide in affected patients, concluding that affected patients has a higher NO level compared to normal healthy individuals. NO levels subside after long periods of withdrawal, correlated with a progress in their skin condition. Another definitive paper on how topical steroids can be the sole cause of your skin problem.
- Paper titled “Corticosteroid Addiction and Withdrawal in the Atopic: The Red Burning Skin Syndrome“. This is probably where the term “Red Skin Syndrome” is first coined by Dr Rapaport in this paper. This paper discusses on what actually happens when patients withdraw from topical steroids – a general red burning sensation developing over areas where steroids have been applied, as well as those body areas that had not been in contact with topical steroids as well. Recovery periods range from 1-30 months in this paper.
- Paper titled “Eyelid dermatitis to red face syndrome to cure: Clinical experience in 100 cases“. This paper follows Dr Rapaport clinical experience on patients who has used topical steroids on their face/eyelids over a prolonged period of time. Similar complications occur during topical steroid withdrawal.
- Paper titled “Complications of topical hydrocortisone“. This paper discusses the usage and (adverse) effects of one of the most common topical steroids – hydrocortisone. Key takeaway is that these topical creams are not without risks. They may result in complications that make your skin symptoms worse. Their atrophy effects do not always complement the anti-inflammatory effects.
- Paper titled “Rational and Ethical Use of Topical Corticosteroids Based on Safety and Efficacy“. This paper calls for the appropriate prescription and usage of topical corticosteroids due to the severe adverse effects when topical steroids are not used correctly, which may lead to cases of topical steroid addiction and withdrawal.
- Paper titled “Topical Corticosteroid0induced adrenocortical insufficiency: clinical implications“. The abstract alone provides emphasis that topical steroid creams must be used carefully in order to prevent potential systemic adrenal suppression effects.
- Powerpoint titled “HPA Axis Suppression and Cutaneous Effects“. This series of slides show the possible correlation between HPA Axis Suppression with the use of topical steroids. The key takeaway is that not only topical steroids have severe atrophic damage on our skin, they can also affect our hormonal system that could result in severe systemic health problems associated with HPA Axis suppression.
- Powerpoint titled “Hypothalamic-Pituitary-Adrenal Axis Suppression Following Topical Corticosteroid Administration“. A good discussion on the mechanisms of HPA Axis damage through the systemic absorption of topical corticosteroids. The slides highlight the difficulty in attributing the diagnosis to the usage of topical steroids, and there is a need to monitor patients through regular hormonal testing.
- Article titled “Adrenal Suppression From Topical Corticosteroids Surprisingly High“. This article highlights the fact that topical corticosteroids have the potential to cause adrenal suppression. Careful use of these drugs must be exercised.
- Article titled “Topical corticosteroid addiction may be to blame when ‘rash’ defies treatment“. This short article calls for the awareness of differential treatment required for persistent dermatitis. Attention is also given to the role of Nitric Oxide with the vasodilatation effect from topical steroid withdrawal.
- Letter titled “Juvenile pustular psoriasis associated with steroid withdrawal syndrome due to topical corticosteroid“. This letter highlights the possibility that pustular psoriasis could be associated to the withdrawal of topical and system steroid therapy. Symptoms described in steroid withdrawal syndrome are also similar to symptoms of pustular psoriasis. My key takeaway from this is that skin diseases that require different discrete forms of treatment may manifest themselves to look very similar to each other. This is a major problem in the field of diagnosis and treatment.
- Book titled “Steroid Addiction 2010 – I’d like to request the Japanese Dermatological Association to remedy its guideline for management of atopic dermatitis“. This book is a translated from the Japanese version written by Dr Fukaya, another prominent doctor in the field of topical steroid addiction and withdrawal. It is 35 chapters worth of quality information and discussion on steroid addiction: research, hypothesis, mechanisms, guidelines, law suits. It is a must-read resource for those who would like to know more about topical steroid addiction and withdrawal.
- Youtube Video titled “Q & A about Red Skin Syndrome: Corticosteroid Addiction and Withdrawal by Dr Marvin Rapaport“. A 17 minute video that discusses on the differences between atopic eczema and steroid-induced eczema, the symptoms of steroid withdrawal, recovery time, and his general clinical experience dealing with steroid-induced conditions.
- Blog titled “Dr. Fukaya’s Blog about TSA“. This is Dr Fukaya’s personal blog. It has commentaries on topical steroid addiction and withdrawal. He shares his knowledge and hypothesis on the mechanisms of how topical steroid interacts with the body through his medical experience and knowledge. One of the authority figures in the field of steroid addiction.
What do we know about Topical Steroid Withdrawal from these resources? A summary of findings:
Topical steroid creams have side effects in that they can cause atrophy (physical damage) and destroys the barrier function of the skin. Upon withdrawal of the drugs, a rebound phenomenon is generally observed. Severity and duration of rebound phenomenon (topical steroid withdrawal symptoms) post withdrawal is dependent on the overall duration, potency, frequency of topical steroid creams used.
Rebound phenomenon may appear on body areas not previously exposed to topical steroid creams.
Secondary damage to the body can come in the form of systemic HPA-axis or adrenal suppression.
The exact mechanism of topical steroid addiction and withdrawal process is still not entirely known. There are a good number of hypothesis described in Dr Fukaya’s book that could possibly explain the mechanism. However, nothing concrete has been medically established thus far.
Certain physical/skin/blood markers are definite: NO levels and IgE (and therefore correlated inflammatory markers like Th2 cytokine) levels are higher than healthy controls in TSA patients. Application of topical steroids reduces langerhans cells . Skin cortisol levels may be suppressed due to topical application.
Extra caution has to be exercised when using topical steroid creams, given the risk of their adverse side effects.
Why do people decide to go through withdrawal?
Simply because nothing offered by conventional medical treatment – the prescription of topical/systemic corticosteroids – works any more. There are also increased awareness of this topic and increased numbers of people who have successfully recovered from their uncontrollable skin conditions by going through topical steroid withdrawal.
In short, topical steroid withdrawal works for people who have been dependent on long term topical steroids prescriptions.
Topical steroid withdrawal also makes sense as a default treatment procedure of steroid-induced dermatitis. When a drug is responsible for creating the mess, the cure is to stop using the drug. (If only more doctors are aware of this simple concept, many people would not have to go through the horrendous withdrawal process.)
What are the physical withdrawal symptoms?
Common symptoms experienced (and not exhaustive) are:
Burning red skin, oozing, puritus (systemic itchiness), flaking skin, dry skin, thinned skin, inflamed skin, edema, temperature dysregulation, insomnia, weight loss, hair loss, swollen lymph nodes, nerve pains, hypopigmentation, hyperpigmentation, tachyphylaxis, photosensitisation, hypertrichosis, stretch marks.
The tricky part about these physical symptoms is that they often resemble typical rashes and eczema symptoms (but they are not). Dr Rapaport mentioned in his youtube video that vasodilation occurs in steroid withdrawal but not in atopic eczema. Less experienced doctors who have limited experience in seeing real atopic patients may have difficulty in assessing and diagnosing the skin symptoms, and thus the quality of medical treatment prescribed may be doubtful.
In my personal description of the physical symptoms – if the descriptions of Hell are true, then experiencing topical steroid withdrawal is Hell. You will experience constant inflammed skin with a burning sensation. Flare ups occur everywhere on your body. You are constantly itchy and your skin is broken, weeping, oozing. You become debilitated if you have a body-wide withdrawal.
Topical Steroid Withdrawal symptoms pictures from paper “The red skin syndromes: corticosteroid addiction and withdrawal”
Topical steroid side effects from paper “Adverse effects of topical glucocorticosteroids”
Steroid withdrawal and recovery pictures from Dr Fukaya’s book “Atopy Steroid Addiction in Japan”
What are the systemic symptoms?
We have established that topical steroids can affect our systemic hormonal system by affecting our HPA-Axis. From wikepedia HPA Axis page:
The HPA axis is involved in the neurobiology of mood disorders and functional illnesses, including anxiety disorder, bipolar disorder, insomnia, posttraumatic stress disorder, borderline personality disorder, ADHD, major depressive disorder, burnout, chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, and alcoholism.
In short, impairment to our HPA Axis function will play a big part in our daily lives, from the basic management of stress, to our behaviours, to our sleep, to our way we communicate with others and so on and so forth.
This should give you enough pause and signal a red flag – that the seemingly innocent usage of topical steroids can potentially result in such lifelong systemic effects that can influence WHO and What you can become.
Is there a way to speed up the recovery? Is there an optimal recovery method?
Through my personal research and physical experimentation, it is my opinion and understanding that the recovery process can be optimized. My personal perspective and concept of recovery is this: A return to a baseline healthy physical/blood/biochemistry/physiological markers.
For example, we do know that NO and IgE levels are crazily high upon starting the withdrawal process. Then my question is “Is there a way to make lifestyle changes, so that these levels can return to normal quickly?”
As extracted from Wikepedia on the topic of Health Effects of sun exposure:
According to the experiments of Dr. Richard Weller, the skin acts as storage for nitric oxide, NO, which is released to the blood upon UV exposure.
Is there a coincidence that Dr Rapaport advises his patients to get more sun, and that empirically, many of the TSW patients in my network, including myself, reported feeling better with improved skin when they get more sun exposure?
The same idea can be made for returning our IgE levels to baseline levels. IgE is related to the broad concept of inflammation, in which there are tons of information available on the internet. General inflammation markers can be easily influenced by making lifestyle changes in our diet and through exercising.
If we can make lifestyle changes to influence or skew these physiological biochemistry markers to our advantage, then all the more we should do it, so that we can recover in the best optimal manner.
The problem we face now is that we have a limited understanding and lack of knowledge of what actually happens during topical steroid withdrawal (save for a few good resources listed above). If we can know more blood markers associated with Topical Steroid Withdrawal, we can have more options to influence them. It is my hope that with more research, we can know more interesting information on Topical Steroid Withdrawal, leverage on these new information, and connect more dots to achieve an “optimal toolbox for TSW recovery”
I have written an ebook on “7 Actionable Tips For Better Skin Today” and it is available at my Eczema Magazine Portal (EczeMag.com) for free. These actionable tips are my efforts to optimize my recovery, based on my concept mentioned above. In short, it is a holistic lifestyle management on these 4 areas – diet, fitness, psychology and the environment. All you need to do is to subscribe to Eczemag.com weekly newsletter and you will receive the ebook link.
Is going cold turkey from topical steroid the best option? What about tapering off from topical steroids?
Most people I know recommend going cold turkey as the best option for their skin. Given what I have researched and through some of my reader’s feedback, I am beginning to think twice about the cold turkey option.
Suppose our goal is to shift our current state of health (some degree of topical steroid dependency) to a state of recovery. Is there a best/optimal way to do this? How do we define the best and optimal way? Is going cold turkey the fastest way to achieve our goal? Do we define fastest recovery as optimal recovery, or do we define comfortable recovery (with as little withdrawal effects as possible) as optimal recovery?
The reasons I ask this question is because when most people who are dependent on topical steroids go cold turkey, they almost invariably experience a very difficult withdrawal process – a hard landing. And so I thought, is there anyway we can achieve our recovery goal in a more comfortable way, and at the same time, perhaps faster too? Comfort and speed of recovery may not be mutually exclusive.
My idea came from my earlier mention concept of recovery “a baseline level of healthy biochemical physiological markers”. Suppose, this scenario:
Person A has some degree of topical steroid dependency, and he decides to get into better shape and wishes to stop relying on the constant need for TS application.
Instead of going cold turkey immediately, can he prepare himself first by altering his lifestyle factors so as to reduce his inflammatory markers and NO levels (and other associated markers with topical steroid withdrawal) to healthy levels. By doing so, he could and may prime his body to go through the withdrawal process, and perhaps experience a lesser degree of “hard landing”. While priming his body, he can slowly taper the usage of topical steroids, instead of going full cold turkey.
Of course, the above scenario could apply to people with some moderate degree of topical steroid dependency. There are also people who reach the point of being allergic to topical steroids and have a high dependency on them, until they can no longer tolerate the application of these creams. Perhaps going cold turkey may be a better option for this group, but honestly, I do not think that is a definitive answer.
My point is that, we should not just go through topical steroid withdrawal without considering making good lifestyle changes that can push our recovery to a more optimal manner – faster, more comfortable, less painful, less debilitating. Doing so requires more information and knowledge on this steroid rebound phenomenon.
Relevant books to TSA
These are useful books to understand the landscape of pharmaceutical industries and how the need to drive profits lead to the push of drugs into the market without substantial longer term testing. A very good read on what is happening behind the scenes.
I love the 2 Nassim Taleb books below as the concept of tail-end risk and iatrogenic conditions were discussed. Doctors need to have more skin in the game in order to prescribe medicine that they would personally use and to their patients. These books provide a great read to expand our mindset and thoughts on the concepts of risks. Risk identification in terms of the long term use of topical steroids is something that needs to be improved.
Antifragile: Things That Gain from Disorder (Incerto)
The Black Swan: Second Edition: The Impact of the Highly Improbable: With a new section: “On Robustness and Fragility” (Incerto)
Relevant Topical Steroid Addiction and Withdrawal Blogs
Visit this page “TSA Related Blogrolls” for a collection of personal blogs.There are plenty of bloggers documenting their personal recovery journey with pictures of their skin condition, most of them gradually improving in the absence of topical steroids.
If you would like to add your blog to this website, drop me a message!
How can I help?
Start by creating awareness and sharing information on topical steroid withdrawal and the potential dangers of topical steroids to the public. Getting people to know about this condition is a first step. Getting more doctors to acknowledge this condition will be awesome, as these people provide frontline medical care to the public. By acknowledging this condition, quality and correct healthcare options can be provided to topical steroid dependent patients.
Share this blog as well as other blogs listed in my blogroll to the public, friends, family and especially people with eczema and skin conditions that require the use of topical steroids.
Participate in my FB discussion group to learn more about this topic and generate ideas for better skin improvement.
Please feel free to share and use this resource in anyway you like. (All I ask is a simple credit link back to this original resource page. Thank you!)