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Eczema and Skin Management at 35 months TSW (Topical Steroid Withdrawal)

Skin and itch management at 35 months TSW seems pretty simple compared to our treatment and skin/wound care routine at 5 months TSW seen here.

Brian’s current regimen has been as follows. This will likely change (again) as the weather gets cooler, the skin dryer, and the “eczema season” begins once more.

Goals:

  • To keep the skin clean, hydrated, and infection-free
  • To utilize effective itch/scratch management to prevent breaks in the skin
  • To support the body/skin via taking needed vitamins/supplements, monitoring sugar and dairy intake, and getting proper nutrition/hydration, exercise, and sleep
  • Utilizing stress management and deep breathing techniques

Treatment/Skincare Routine: At least once daily shower, followed by application of organic coconut oil (face, extremities, trunk). Hot summer months require a “lighter” moisturizer.

***Lately Brian’s been able to go without using coconut oil (or any) for moisturizer. He still uses it as sunscreen for face and exposed areas when playing baseball.

Infection control measures:

  • Apple cider vinegar (ACV) bath (10 minute soak) or 20 minutes in microsilk tub bath 3-5 times per week,  followed by shower/rinse off and coconut oil or nothing
  • Spray sovereign silver, as needed, on any open areas or broken skin.
  • If all other measures fail and skin/itch worsen, short term oral antibiotics have helped, but thankfully he hasn’t needed them much. In fact, he needed antibiotics more often when he was on topical steroids for his eczema.
  • Change sheets every day

Vitamins/Supplements/Diet: Vitamin D3, Omega 3 fish oil capsules, recommended by pediatrician;  pantothenic acid, DAO histaminase, B complex, culturelle probiotic–supplements prescribed by naturopath to address methylation issues (difficulty processing histamines and sensitivity to eggs, dairy, and fruit-sugar combos) and provide gut support; try to monitor dairy, egg, and processed sugar intake

 Itch/scratch management: Generally 0/5 to 2-/5 scratching (See log for scratch scale.) Cut and file fingernails short. Deep breathing/relaxation techniques, acupressure points, ice packs, distraction. He will use benadryl liquid as needed but hasn’t used it in months.

If needed for >3/5 scratching: Dr. Wang’s purple eczema ointment, The Home Apothecary’s lemongrass balm, moisturizer such as coconut oil, or sovereign silver gel/spray–haven’t needed these lately

Remaining TSW symptoms: (compare to March 2, 2014 at five months TSW and 28 months TSW. )

  • Shedding—As in past 2 summers, progressive decrease in visible, measurable shedding from end of June to now (beginning of September). Now shedding is almost imperceptible even when shaking sheets in morning.
  • Elephant skin—not evident in July, August, or early September
  • Red sleeves, edema—none noted this summer in upper or lower extremities compared to January/February 2016 (feet) 
  • Ooze smell—light to strong ooze smell in May and June but none too obvious from July to now. Heavy night sweating with faint ooze smell was also absent the past few months.

Skin quality:
–Back is soft, smooth but has intermittent eruptions of erythematous papules scattered on posterior scapulae and low back–haven’t pinpointed the trigger

–Shoulders, elbows, knees textured with scattered hypopigmentation from scratching on tan skin. Dry but no obvious flaking

–Still with periodic small breaks in skin on shoulders, elbows, hands, or knees from scratching/picking

–Able to play in the sun and heat and sweat like the best of us–without freaking out

Function: Sleeping through the night (roughly 10:30p-7am). Staying active with 8th grade, travel baseball with 2x/week practice,  cross country, church, golf (which he took up on 8/30/16). Overall, he’s doing well despite “not perfect” skin, but then, no body’s perfect!🙂

We are very thankful that Brian’s skin is no longer limiting his participation in or enjoyment of activities. So, is TSW finally over? Only time will tell. Fall and winter are just around the corner, and we’ll have to wait and see what symptoms arise with the lower humidity and cooler temperatures.

In the meantime, we’ll continue to praise God for his healing touch, live beyond the itch, and “Play ball!”

You make me glad by your deeds, O LORD; I sing for joy at the works of your hands.”

Psalm 92:4


Beyond the Itch

Topical Corticosteroid Withdrawal – Q&A with Prof Hugo

In March 2015, the National Eczema Association (NEA, in US) published a study on steroid addiction in patients with atopic dermatitis. This was by members of its task force, who looked into the evidence regarding steroid withdrawal as many eczema sufferers were asking about the steroid addiction syndrome, along with many cautioning and enquiring on this online and over social media. The use of steroid creams remains a common treatment option, and the phobia of steroids has also stopped eczema sufferers, including children, from receiving treatment. The questions we are exploring with Professor Hugo centered on:

  1. What is steroid addiction?
  2. What is steroid withdrawal and its symptoms?
  3. Is steroid addiction/ withdrawal common?
  4. What are the treatment options for eczema?

Professor Hugo is no stranger to this blog – He has previously helped in Friday Doctor Q&A in 2012 and is my co-author for our book “Living with Eczema – Mom Asks, Doc Answers”. Professor Hugo van Bever is the Professor in Paediatrics (MD, PhD) at the National University Singapore, and also the Senior Consultant in its Division of Paediatric Allergy, Immunology & Rheumatology.

The questions are loosely structured based on the paper published by the National Eczema Association, to address the above questions that are surely on the minds of many parents with eczema children.

Topical corticosteroid withdrawal

What is Steroid Addiction?

MarcieMom: Steroid addiction is used broadly to refer to eczema sufferers whose skin are “addicted” to the topical corticosteroids, and therefore, when they stop applying the steroid creams, they experience steroid withdrawal and its adverse symptoms.

MarcieMom: I looked up the meaning of addiction online and found a broader definition by MedicineNet.com that defines addiction as

“An uncontrollable craving, seeking, and use of a substance such as alcohol or another drug. Dependence is such an issue with addiction that stopping is very difficult and causes severe physical and mental reactions.”

Medical definitions of addiction linked addiction to a brain disease, rather than a skin disease. Is it even possible for the skin to crave topical corticosteroids and be dependent on it to the extent that stopping is difficult?

Professor Hugo: I disagree with the word “addiction”, as the situation here doesn’t refer to a mental state (addiction always refers to a mental state). As for the possibility of the skin being addicted, the answer is NO!

To me, it is more a “bad habit” of using topical corticosteroids (TCS), mainly because of wrong expectations of this treatment. When used inappropriately (such as too long, too high, too frequent, or too strong), every medication (even a simple anti-fever medication) can cause side effects or unwanted (unexpected) effects. That’s why it doesn’t surprise me that inappropriate usage of TCS can cause withdrawal effects or, at least, unexpected side effects – I strongly doubt the existence of a withdrawal syndrome (especially when there are no specific biopsy features).

What is Steroid Withdrawal and its Symptoms?

MarcieMom: From Dermnetz, topical corticosteroid withdrawal refers to:

(1)   A rash that has appeared within days to weeks of discontinuing topical corticosteroid that has been used for many months. This flare may be worse than the pre-treatment rash. Before stopping the topical corticosteroid, the skin is typically normal or near-normal, although localised itch, ‘resistant’ patches of eczema or prurigo-like nodules may be present; and

(2)   The rash must be only where the topical corticosteroid was being applied, at least initially, although it can later spread more widely.

From the review article by NEA, there are two types of rash:

(1)   Eythematoedematous type – meaning redness (thus topical steroid withdrawal is also referred to as the Red Skin Syndrome), typically found in patients with an underlying eczema-like skin condition like atopic or seborrheic dermatitis; or

(2)   Papulopustular type – meaning with bumps and pimples, typically found in patients who used topical corticosteroids for cosmetic purpose like acne or pigment.

The withdrawal symptoms include:

  1. Burning and stinging
  2. Erythema (redness)
  3. Mostly on the face and genital area of women
  4. Exacerbation with heat or sun
  5. Pruritus (itch)
  6. Pain
  7. Facial hot flashes

Both types of rash primarily affect the face of adult females and are mostly associated with inappropriately using mid- to high-potency topical corticosteroids daily for more than 12 months.

MarcieMom: First of all, it is important to understand what a review article is. It is not a controlled trial, meaning there are no two groups of people that are given different treatments and thereafter the results are evaluated. Instead, it systematically reviews other studies. The limitation of the study is that the quality of evidence in regard to topical corticosteroid withdrawal in the studies reviewed were very low.

MarcieMom: Is there a way to study topical steroid withdrawal definitively?

Professor Hugo: The article is a collection of case reports, and not a study. There are no studies on the subject. Therefore, the quality of the science behind this is very low. It is a misuse of TCS, and you cannot ask patients (is not ethical) to misuse a treatment in order to prove side effects. Better is to look for its existence in patients who didn’t misuse TCS, but I assume the prevalence will be close to zero.

MarcieMom: It is also briefly discussed in the review article that the signs and symptoms of atopic dermatitis may be confused with that of steroid withdrawal. It is suggested in the review article that if:

(1) Burning is the prominent symptom, and

(2) Confluent erythema (meaning continuous red patches) occurs within days to weeks after stopping topical corticosteroids, with

(3) History of frequent, prolonged topical corticosteroid use on the face or genital region, then the symptoms are more likely to be from topical steroid withdrawal (rather than other forms of dermatitis).

MarcieMom: How do we know if the rash is caused by steroid withdrawal and not something else? Would you contact patch testing for contact allergens?

Professor Hugo: The so-called withdrawal syndrome (as a consequence of misusage of TCS) is mainly made-up by a re-occurrence of eczema lesions, as shown by looking at the results of the biopsy studies: the withdrawal syndrome has no specific biopsy features, but mainly features of eczema. Therefore, I am not sure whether the withdrawal syndrome is a separate entity, or whether it is mainly an expression of re-occurrence of eczema. Indeed, I strongly doubt of its existence.

I think the withdrawal syndrome is NOT a new syndrome, but merely a flare-up of eczema on an altered skin (because of the long-term usage of TCS).

It is not a new syndrome because:

  1. It has no specific clinical features (all manifestations might be manifestations of a re-occurring eczema)
  2. It has no biological marker (blood)
  3. It has no solid underlying mechanism – hypothesis
  4. Biopsy finding are similar of findings in eczema (no specific biopsy)

It is merely a re-manifestation eczema, but on an altered skin, because of the long-term usage (misusage) of TCS.

  1. Alterations of the skin can be summarized as following:
  2. A thinner epidermis (as a consequence of misuse of TCS)
  3. Higher Staphylococcus aureus colonization, as TCS do not affect Staph colonization – this explains the papular / pustular (infected) features of the lesions
  4. A concomitant contact dermatitis (to TCS or other substances)

Contact dermatitis is a possibility, but is not common in children (more in adults), especially after years of usage of creams.

Is Steroid Addiction/ Withdrawal common?

In the review article, there were various factors that contributed to topical corticosteroid withdrawal, namely:

  1. Mid or high potency use of topical corticosteroids
  2. Daily use of topical corticosteroids (only one out of the 34 studies recorded frequency)
  3. Duration of use longer than a year

From the studies reviewed, only 7.1% of the cases reported (in these studies) were of patients 18 years and younger. Only 0.3% were for children younger than 3 years.

MarcieMom: The general guideline in topical corticosteroid use for children is using a mild to (no higher than) mid potency, no more than twice a day, for a two week period. Professor Hugo, do you think that it is likely that children will suffer from topical steroid withdrawal even with the right use of prescribed steroid cream?

Professor Hugo: Patients should know that eczema (or atopic dermatitis) is a non-curable disease and that no doctor in the world can cure eczema today (perhaps in the future a cure will be found, mainly through immunomodulatory treatments, but not for the moment i.e. at the time of this interview in September 2016).

TCS are effective in controlling inflammation of the skin, and are, therefore, a part of the therapeutic approach to eczema. However: 1) TCS are ONLY (!) part of the treatment, which constitutes of offering a holistic package to the patient (focused on life style, and on usage of other treatments), and 2) once TSC are stopped the lesions will re-occur, as TCS do not cure, but only control inflammation, and 3) the rule is to use mild TCS (according to age and severity of the patches), in combination with antiseptics (TCS on a clean eczema patch) and NEVER more than 2 x day.

The main observation here is that this withdrawal effect is not caused by the TCS on itself, but by the inappropriate usage (i.e. misusage, leading to over-usage) of it. The unwanted effect was mainly seen in adult women (in more than 90%) who were using their TCS as if it was a kind of moisturizer. In other words, every time they felt a little itch or saw a little flare-up they put their TSC on it, many times per day, and during long periods (in 85.2% for more than 1 year).

The main point here is that TCS were misused, mainly because patients had wrong expectations of TCS, which I assumed is due to lack of correct information on eczema and on the role of TCS in its treatment. Who is to blame? I guess, both the doctor and the patient, and, for sure, the wrong doctor-patient relationship and wrong communication. Correct information on eczema and on the role of TCS is pivotal.

When TCS are used appropriately, as part of the holistic treatment of eczema, and according to correct expectations, it is extremely unlikely that a withdrawal syndrome will occur. I even dare to state that it is even (almost) impossible. However, I recommend close monitoring of all children with eczema, with appropriate individualization of treatment, focused on offering a treatment package in which TCS have a role, but only as a controller of acute inflammation, and with strict rules on their usage.

What are the treatment options for eczema?

MarcieMom: There are many brands and types of topical corticosteroid creams available, with varying potency and with different chemicals, and functions (for instance, with the added ingredients to reduce bacteria or fungus). Often, there is a trial and error process to see if a certain prescription cream works.

MarcieMom: How would a patient know if the steroid cream is not working for his rash? Is there a safe period of trial before stopping?

Professor Hugo: TCS are only PART of the treatment, and usually have a fast effect on acute inflammation (1 – 3 days). For each patient the optimal TCS needs to be selected (based on severity and age) and needs to fit into the whole package of treatment.

MarcieMom: There are many other eczema therapeutics that can be used alongside topical corticosteroids or in place of topical corticosteroids, for instance:

  1. Moisturizing – with a quality emollient that does not contain major irritants and have humectant properties and lipids to help with skin lipid deficiency
  2. Bathing – Basic good bathing routine like no hot water, no soap, no longer than ten minute, pat dry and not rub dry AND moisturizing immediately after
  3. Wet wrap or dry wrap
  4. Ways to reduce staph bacteria, such as swimming, using diluted zinc sulphate or chlorhexidine gluconate
  5. Non-steroidal prescriptions like topical calcineurin inhibitors
  6. Antihistamines

MarcieMom: I’m a believer that one ought to diligently practice good bathing and moisturizing regime, reduce staph bacteria colonization, along with healthy lifestyle (non-inflammatory diet and exercise). However, I find that sometimes we tend to discuss topical corticosteroids exclusively, i.e. use topical corticosteroids or (do something else). What are your top 3 eczema therapeutics in your practice and how effective has these reduce the use of topical corticosteroids in your young patients?

Professor Hugo: My top 3 are: allergen avoidance (airborne food, house dust mites  – which is an outdoor life style) – usage of antiseptics (swimming – baby spa) and extensive usage of moisturizers have important additional effects and are therefore TCS-sparing.

MarcieMom: In summary, topical corticosteroid withdrawal is increasingly acknowledged by the dermatological community as evident by NEA taking the step to conduct a systematic review. However, we have seen that it is not easy to diagnose topical steroid withdrawal, and at the same time, removing topical corticosteroids completely as one of the eczema therapeutics may make it harder to treat the eczema/ skin inflammation. It is therefore important to recognize both the dangers of steroid misuse and underuse. Physicians should adopt an open attitude when hearing about patients’ steroid fears as totally ignoring steroid phobia would possibly alienate patients and without trust, it is making controlling eczema an uphill battle.

Eczema Blues

Topical Steroid Withdrawal: Myth vs. Reality

Topical Steroid Withdrawal exists, but thankfully it isn’t as widespread as you may think. Read on to learn more. By Neil R. Lim, BA and Peter A. Lio MD (see bio below) Topical corticosteroids (TCS) were hailed as a modern medical miracle when they made their debut over 60 years ago. For the first time, many […]
It’s an Itchy Little World

Topical Steroid Withdrawal: Myth vs. Reality

By Neil R. Lim, BA and Peter A. Lio MD (see bio below) Topical corticosteroids (TCS) were hailed as a modern medical miracle when they made their debut over 60 years ago. For the first time, many inflammatory diseases that caused a tremendous amount of suffering could be quieted.  While certainly not a silver bullet and […]
It’s an Itchy Little World

3yrs Topical Steroid Withdrawal

Hey everyone!

Today marks my 3 year milestone of ceasing the use of topical steroids and other steroidal treatments. I won’t say I’m healed… not by any means. But I am able to live life comfortably again and without much disruption.

My face and neck area are still my most problematic areas but they have been since the age of about 16. They were also the areas where I used the most creams and ointments so it makes sense really for it still to be over-sensitive and quick to react to potential triggers and allergens.

I’m still on Ciclosporin but I’ve dropped my dosage to 250mg, down from 350mg, and though my skin hasn’t completely cleared up, as it did the very first time I used it, it’s still helping me on the days where I do struggle.

I also had a cold sore this past week and decided not to take as much Aciclovir as I usually do, just to test the waters and see if it would spread and turn into eczema herpeticum. Luckily my prayers were answered and it didn’t spread at all from my lip. It did however take longer to heal and I kept managing to knock off the scab, but my body finally seems to be helping itself out. My vegan diet still isn’t perfect and there are still refined foods in there but I am choosing more whole food options where I can.

I’ve also started to exercise! This was a huge problem for me for years before I even discovered TSW. I mean I’ve never been into exercise as I was the fat, unfit kid at school who was self conscious and didn’t care for getting hot and sweaty and then having to traipse around for the rest of the day feeling disgusting… but it got to a point where my skin just couldn’t handle sweat. I had heat urticaria and it would sting, burn and itch like hell if I so much as became slightly too warm. So I’m pleased to say I can now sweat and do exercise. My skin does suffer sometimes, for example when I go out for a run, the elements are not usually in my favour and I find that the wind can cause my skin to flare and I then spend the next few days with a red blotchy face. This also seems to occur when I go to the gym and I’m wondering if the cause is because I’m being exposed to other people’s skin bacteria? However exercising at home then jumping straight into the shower seems to be mostly fine for me. I’m hoping to improve on my skin tolerance the more I do it.

At the beginning of this whole saga, you may or may not remember that I became extremely allergic to cats, despite having grown up with them. This allergy has now diminished drastically and I don’t think it’s a coincidence that the lack of steroids has helped to rebuild and repair my broken skin barrier that was making me more susceptible to allergic reactions. I’m hoping in the not so distant future that I’ll be able to get a cat. More time and exposure is required though me thinks.

Another thing that has happened, that I’ve talked about before – 3 years ago I had reached a point where I struggled to work my part time job. I struggled to put clothing on, let alone the ability to actually leave the house! I was a complete and utter mess. In July last year I built up my hours to 30 per week. In September I had upped them to 36 and I have managed to work a full time job without a skin sick day for well over a year now. It’s staggering to see just how far I have managed to come. I no longer ooze. I believe the last time I had ooze was over a year ago too and that was actually because I had an infection.

This time in 2 weeks I will be at a festival in another country that is significantly hotter in temperature. I could only have dreamed of doing that this time 3 years ago, and finally it can be a reality. I am scared that my skin will relapse but I’ll arm myself with antihistamines and the like, wear cooling clothing etc. and just have a bloody good time. I do deserve it after all. I’m not camping though. I think those days of being a smelly mess out of choice are well and truly over. No, we will be living it up in a 4* hotel, so if I do relapse then I’ll have comfort. It is truly wondrous though to see how far my skin has come. When the weather became hotter here in the summer I struggled so much with my urticaria but thankfully now it seems to be something of the past. I can also eat spicy food now, stand in front of the cooker with the hobs blaring, and even wear layers of clothing! Miraculous!  

I also generally have more energy – whether this is due to my vegan diet, my uptake of exercise or my body finally having a break from healing my skin, I can’t say. But it’s bloody good stuff. My hair has also gotten thicker. Back in January 2012 I took Methotrexate which resulted in the loss of my already fine hair which I put down to having scalp eczema. Right now it is the thickest it has been for a long time, though of course my hair has never been massively thick, but I’m no longer embarrassed for having the skinniest pony tail in the world.

I can’t remember when I last had to hoover my bed. I used to have to hoover it every single day, multiple times a day, as well as lay on towels to stop the ooze from staining my bed sheets; soak off dried oozy tissues that had hardened onto my face; constantly endure the metallic and pungent rotting aroma of the ooze; the sleepless nights; running a bath at 3am and spending the next 6hrs topping up the water and falling asleep in it just to get some respite… I’m so glad those days are behind me.

Some photographs from my skin hell journey over these past years:

 PRE-TSW

Weird triangle-nose face rash

Weird rash on thigh

Bruising on thigh from over-scratching

Same as 1st image but a different day
DURING TSW
Allergic reaction to staying round mum’s with the cats

All greased up with my arms covered to stop scratching and ooze, and red rashes on thighs

A mixture of TSW/ MRSA/ Elephant skin

Swollen eye
During MRSA/ TSW period

The result of bad skin and skin picking compulsion (dermatillomania)

Rash

Eczema herpeticum and Cellulitis of the eye

Red sleeve 

MRSA/ TSW

Ooze

Leg sleeve

Development of Pompholyx

Tummy rash

Skin flakes
More flakes

Tight, hardened ooze and raw open wounds

Thigh rash

The tissue nightmare of constant ooze
Elephant skin

2014 – Thin hair
I have faith that my skin will get ever stronger. I fully accept that it will take years and that I may never truly heal because of the extensive damage that I have bestowed upon my skin, thanks to doctors and dermatologists who have misdirected me in terms of usage safety, but I will get there.
Hope everyone else isn’t suffering too much. Happy healing!

I Have Eczema