Disclaimer: The information in this post is for educational purposes only. Do not stop using medication unless you are working with a qualified practitioner. Note that coming off the medications described in my post may lead to full body flares, pain, and additional financial burden.
How I Was Affected By Topical Steroid Withdrawal (TSW)
By Tracy T.
I suffered from chronic eczema since I was a baby. From childhood to adulthood, doctors and dermatologists prescribed me topical steroid creams (corticosteroids). Over the years, when a dose became less effective, doctors—damagingly—prescribed stronger doses.
In my 20’s topical steroids stopped working for my face eczema. A dermatologist prescribed Protopic ointment (tacrolimus)—a non-steroidal immunosuppressant—that gave temporary relief. I was still using steroid creams on my body. The rashes persisted. Years later, I was prescribed Prednisolone (an oral steroid medication); Under my doctor’s orders, I took the medication over three weeks, three times in two years.
Long-term use of topical steroids/immunosuppressants damaged my skin—it became thinned-out, sensitive, and reactive—causing broken capillaries, bruising, and moon face. I had increased hypersensitivity to the sun, and contact with everyday external factors (e.g., foods, dust, stress, pets) would trigger me.
Doctors claimed I would have eczema for life; and, I would need to treat it with conventional medication forever. But thankfully, I found another way, so I decided to go off medication and stop damaging my skin further. It is when I discovered my body’s dependence on corticosteroids, known as Topical Steroid Addiction (TSA). By stopping steroid medication (topical and oral), my body underwent a debilitating process of Topical Steroid Withdrawal (TSW). I later discovered the immunosuppressant (topical/oral) played a role in my withdrawal, making the process more complex and painful.
Overall, the conventional method never addressed my underlying eczema; and going through TSW could have been avoided if I had not used corticosteroids in the first place.
What Is Topical Steroid Withdrawal (TSW)?
Both long-term and short-term (only weeks) use of corticosteroids creates Topical Steroid Addiction (TSA), which leads to Topical Steroid Withdrawal (TSW). It causes the red-skin syndrome, which is more than red skin—it is a debilitating, painful process that can leave people home-bound and bedridden for months. Its symptoms include:
- Eczematous rashes (worse, covering new areas of the body)
- Hyperpigmentation
- Elephant skin
- Red, burning, cracking, oozing skin
Red-skin syndrome can extend to the full-body to cause:
- Insomnia
- Fatigue
- Nerve-pain
- Hair-loss
- Menstrual cycle disturbance
- Appetite disturbance
- Bone-deep itching
- Gut and digestive health
- Weight gain or weight loss
NOTE: Topical Steroid Addiction and Withdrawal was reported in the International Journal of Dermatology in 1979 (Kligman and Frosch, 1979)—but today is mostly unrecognised or dismissed.
Topical Steroid Withdrawal (TSW) Gets Misdiagnosed
The problem with TSW is that it can resemble eczema and go undetected—especially you are still using corticosteroids (topical creams or oral drugs): This was my experience.
Since TSW gets commonly misdiagnosed as worsening-eczema, often corticosteroids are given to control symptoms; but they become less effective as symptoms worsen. Symptoms spread to previously unaffected areas, requiring stronger doses or non-steroidal medication, e.g., an immunosuppressant.
- Corticosteroid drugs are synthetic steroids; they imitate the body’s natural inflammatory response.
- Immunosuppressant drugs reduce the body’s immune system strength; they prevent or suppress an immune response.
Both get prescribed to “control” and “manage” the outbreaks—and it leaves people in a continuous cycle of temporary relief for many years. Also, neither address the root cause of underlying eczema.
What I did to help support this deliberating TSW symptoms?
Withdrawal time and complete recovery are different for everyone; it can last months or years with ongoing flares. Different body parts will heal at different times.
Individual TSW recovery time depends on the following factors (from accumulation of toxin, drainage + detox pathways, drug dosages, and duration of use):
- Repair, correct skin health (PH balance, skin microbiome, skin barrier)
- Avoid environmental triggers, irritants (mould, pollen, dust mites etc.)
- Identifying infections (overgrowth/bacterial/ fungal)
- Correct nutrient deficiencies
- Incorrect diet (calorie defects), food intolerances
- Viral and toxin load
- Stagnant lymphatic system and poor circulation
- Gut health (dysbosis, barrier permeability, inflammation)
- Stressed adrenal glands (cortisol release)
- Nervous system dysregulation (chronic stress and past traumas)
- Compromised or weakened immunity (caused by steroids and immunosuppressants) Autoimmune response.
- Genetic predisposition (allergy & skin condition)
- Thyroid Health
Detox Pathways:
- Skin (unable to sweat)
- Liver toxicity; sluggish, stagnant, heated, or fatty
- Inefficient kidneys (not filtering)
- Bowels not eliminating properly
TSW recovery simply occurs with time. While this is possible- since the body capably heals when we stop using immunosuppressants— the recovery will not undo damage or address an underlying condition. Even after complete TSW recovery, many sufferers will still have eczema or sometimes come back with a flare years after. It's important to find the underlying, root causes so you could continue to support, manage symptoms. With time, patience and consistency you can eventually lead to significant relief and possibly remission.
(I understand everyones circumstances are different and no judgement if you continue with steroids, immunosuppressants, JAK inhibitors, biologics drugs to get you through, you can still work on your skin health and underlying root causes as you taper off these drugs.)
How My Experience Can Help You ( I treated Adult TSW, Adult Eczema, And Baby Eczema)
I learnt to treat my TSW symptoms during the initial severe phase. Later, I learnt to treat moderate adult eczema that returned during my pregnancy and my most difficult battle with a bacterial overgrowth and fungal infection during a mould exposure. At the same time, I treated my son’s severe eczema. My experiences allowed me to compare our skin reactions based on correct homecare, food patterns, herbs, and supplements—tried a handful of diets, treatments and seeing multiple functional doctors, Naturopath, Osteopath, Herbalist, Heath Coach, Skin Nutritionist and TCM (Traditional Chineses Medicine Doctor, and Acupuncturist) it further expanded my knowledge and personal transformation.
A corneotherapist (skin therapist), I specialise in skin health and compromise skin. I learnt that treating eczema and TSW relies on different methods, individual treatment must also account for differences in severity. In TSW Skin Consultation, I make recommendations based on my personal experience, I personalised and narrowed-down to the relevant steps to ensure you are moving forward with your healing. If i feel you need further support I will send you to our naturopath for further investigation and together we will have your case and help you find your underlying issues and root causes.
I hold great compassion for sufferers as I understand the frustration of dealing with TSW, being gaslighted with GPs and Dermatologist a skin condition not yet recognised by the medical system. While I was unaware my health was deteriorating from ineffective conventional treatment—and was desperately searching for answers to restore my skin’s health. My recovery motivated me to help others going through the same path as me.
Additional Resources -
https://www.itsan.org a great resource, that also has a section for health professionals and GPs
https://www.itsan.org/resources/ check the checklist
https://www.youtube.com/watch?v=x4ypA9w81f0 Dr Heba breaks it all down