Eczema Free Forever™ Eczema Free Forever™

Day 579 – Day 609 Topical Steroid Withdrawal

(10/1/2015 – 10/31/2015)

Lots of calm this month, but some food flares.  Food is ALWAYS the cause of the big flares.  Always.  The big chunks of days missing just assume the skin stayed the same.   Something to note, I photograph a lot right out of the HOT shower.  This eccacerbates the redness and inflammation for a bit.  Really highlighting the damaged skin.  What’s also important to note is after icing and applying makeup, I can appear totally normal most days.  



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I always photograph right after shower.  It accentuates the affected areas.

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I cooked something with dairy and then rubbed my face on accident.

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Makeup does wonders…

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My shoulders are the worst skin I have and they are the only place I applied steroid lotion.


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Food flare.  Right after shower.  SO itchy.  SO painful.

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SAME DAY!  With makeup!  

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My solders just decided to fall the eft apart.  They HURT.


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The next day they’re better 


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Peace Out Eczema

Topical Steroid Withdrawal Month 25.5

Hey guys,

I’m now 2 years, 1 month and a couple of weeks into the topical steroid withdrawal process. I’m still flaring but it is primarily on my face and neck, as it used to be before I became consumed by eczema. I have little patches on the backs of my knees and my inner elbow creases, alongside a couple of other insignificant places but that is because it has been so damn hot here in the UK and my sweat has obviously caused skin irritation.

About that though, the heat I mean. I’ve done much better this year with the heat than in the previous couple of years. This time last year, and in my first year of withdrawal, my skin was an absolute mess. I had to take a hell of a lot of time off work because I couldn’t even get dressed because my skin was that awful. This year, I’m sweating and it’s still horrible and my face and neck have gone rashy but it isn’t anywhere near as bad. Also I am so thankful I now have a car with air con. That really helped when the inside temperature read at 35 degrees(!) and the breeze was also warm when the windows were down. Also worth noting, at home this year I haven’t used the fan to help cool down. Shane has, because it’s been ridiculously hot but I didn’t feel I NEEDED to use it like I previously did. Especially on night times. Hurray!

I have also managed to leave the house sans tights – Yay! If you remember last year, and the year before, my legs were a mess from TSW so had to stay covered up if leaving the house. My whiter than white pins have finally seen daylight publicly. However being able to wear shorts is still a long way off because of stupid weight gain. Read below.

In terms of medication, my Ciclosporin has been upped to 350mg a day – 200mg in the morning and 150mg at night. It hasn’t made much of a difference for my face but then I have seen some people say it loses efficacy over time. I’ve been on it numerous times in the past 5 years so this makes sense. I do have to come off it next month though because I’ll have been on this particular course for a year.

I am slightly concerned with it at the moment though. I’ve never witnessed it in the past, but over the year since I’ve been taking it I’ve gradually gained over a stone in weight without changing my diet or lifestyle. Some people have said this could just be my body readjusting because of the steroid withdrawal as initially I lost weight. To put this into perspective prior to TSW I was around 9 stone 5lbs this dropped to 8 stone 11lbs, and then when my hair started to grow back (I lost a lot of hair from taking Methotrexate back in Jan 2013) I went back up to around 9 stone 4lbs. I then started my vegan diet in June 2014 and hovered around the 8 stone 13lbs to 9 stone 1lbs. Then I went on Ciclosporin in the August 2014. Since then I’ve slowly gone up to 10 stone and having recently upped the dose again (May 2015) I’m hovering around the 10 and a half stone mark. I’m absolutely gutted. I feel and look disgusting.

I’m still finding difficulty with exercising and now even more so because of this damned heat. Perhaps I need to go back to the strict plant based vegan diet I was undertaking this time last year which I keep harping on about. I just feel crap and rubbish. A lot of people claim they can’t even see my weight gain but that’s because it has all gone to my stomach area so I can hide it to an extent. I’ve been experiencing a lot of bloating lately too. I’m supposed to be having a blood test this week so perhaps it is worth enquiring about a urine test just in case.

I’ve already asked in the Facebook group, but has anyone else experienced weight gain from Ciclosporin?

Also I did ask about trialing Dupilumab but the derms have been rubbish in pushing it, and I did try emailing myself but haven’t had a reply. Not sure what more I can do on that front.

How is everyone else doing?

I Have Eczema

Report your Topical Steroid reactions to the FDA

PLEASE, PLEASE, PLEASE report to the FDA any adverse reactions you may have or have had from topical steroids, non-topical steroid medication, or other medications you have tried for eczema. (Of course you should also tell your doctor of these reactions.)

Per the FDA, “bad side effects” include new or worsening of symptoms. Sound familiar? Tell them about the burning, stinging, increased itching, redness, oozing, shedding, swelling, insomnia, temperature dysregulation, hypersensitivity, fatigue, elephant skin, thinning skin, loss of function, loss of work or school, etc. Look oat the “side effects” listed on the patient information inserts. Have you experienced any of those side effects? They need to be reported. The only way doctors know what happens after we leave the office with these medicines is if we tell them and if we report the reactions to the proper authorities.

If you have stopped using topical steroids (TS) and are going through topical steroid withdrawal (TSW), list the signs and symptoms BEFORE stopping TS, then list the signs and symptoms AFTER stopping TS. Make sure to identify before and after, even if the signs and symptoms are similar.

They need to hear from more of us! All of us!

FDA Medwatch: http://www.fda.gov/Safety/MedWatch/

Remember to save, make a copy, or take a picture of your report, and follow up with a call to the FDA line –(855) 543-3784 toll-free, or (301) 796-3400– if you do not get email confirmation that they received it.

OTHER:
Canada: Canada Vigilance Online Adverse Reaction Reporting

New Zealand: New Zealand medicines and medical device safety authority

UK: UK Yellow Card Drug Reporting Link

That’s what I did when I found out that Brian’s “worsening eczema” was not just eczema anymore. Make our kids’ suffering count for something. Report your experience. We CAN make a difference!

Thank you!


Beyond the Itch

Topical Steroid Withdrawal in Children

The peer-reviewed, revised version of “A Systematic Review of Topical Steroid Withdrawal in Children Diagnosed with Eczema” replaces my original manuscript submitted to Dove Press Medical in June 2015. My “Response to Reviewers” is published here so you can see reviewers’ comments and my responses and amendments to the paper.

After some revisions in response to reviewers’ comments, they chose not to publish it because they felt “there were no articles to support the inference that topical steroid withdrawal (TSW) can occur in children” (THIS was the point of the paper: there is no research on TSW in children, and research needs to be done because children are suffering), I will publish it here and make it available to the public in the hope that someone will accept the challenge to think outside the topical steroid box and study Red Skin Syndrome/Topical Steroid Addiction and TSW in children. Prevention, early detection, and treatment ARE possible, but the blinders must first be removed.

Keep sharing your pictures and your stories! Keep educating others and save someone’s skin!

“It is God’s will that by doing good you should silence the ignorant talk of foolish men.”     1 Peter 2:15


Beyond the Itch

TSW Update: 26 Months Free of Topical Steroids

December 6, 2015 marked 26 months since we stopped using topical steroids (TS) for Brian’s worsening eczema and deteriorating health. Throughout topical steroid withdrawal (TSW) and our attempts at using various alternatives to TSW eczema/itch management, Brian’s pediatrician has been supportive. I thanked him for working with us and not belittling or disrespecting us as other doctors have done to other parents of children going through TSW. He said that his main goal is to have a child be able to live, play, have fun, and do all the things children are supposed to do; whatever route that entails does not matter as long as it works for the child. Thank God for good docs.

Current function
Energy and activities–Running, jumping, laughing, playing, and getting cuts, scrapes, and broken bones like a normal 12-year-old boy. Finished strong in travel baseball and cross country. Playing basketball for the winter.

School: Stays up way too late but manages to get up every morning to walk to the bus stop with friends–even in 30 degree weather. Picking up where he left off last year, he made straight A’s on top of all his activities and despite the eczema/TSW spectre. We’re very proud of our TSW warrior for his perseverance and attitude through the toughest of times. Give yours an extra loving hug today!

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Cross country (Brian 2nd from left)

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Feet still intact 12/2/15

But return of the full-body, measureable shedding of skin and…IMG_1921

plasticky elephant skin! IMG_1932

Challenges: Fall and Winter weather wreaks havoc: increased dry, flaky skin, makes skin itchy. Return of full-body, measurable shedding of skin. At night, one can palpate the heat emanating from his body and a dampness in the sheets like the oozing days of old, but not full-on ooze. More like sweating with the slight scent of ooze.

Scratch/Sleep: Compared to Summer, the frequency of scratching this Fall has increased: 0/5 to 3/5 during the day and 0/5 to 3-/5 at night, with or without erythema. Sleep is disrupted during the night again, general between 2 and 3:30 am due to scratching or being cold, and some nights he does fine. I just reapply the balms and oils and he falls right to sleep. Then I go on the computer to do more writing and researching.

Skin quality: varies from looking good with normal color to dry, flaky eczematous areas or head to shin (basically full-body) patchy erythema with dry shedding skin. This skin change can happen day to day or within 12 hours of each other. There are fewer regular scratches on skin. Tough areas are shoulder blades from night scratching.

Still TSW or just eczema now? Only time will tell, but to me, the elephant skin, full-body shedding, and ooze-related dampness indicate that TSW is not totally done; better, but not over yet. The eczematous symptoms, themselves, do seem seasonal, though, when I compare Log entries from October-December 2014 to the skin events October-December of this year.  It’s incredible how similar they are, even to the time of onset! And so we march on….

Current treatment
1) Prayer and thanksgiving
2) Skin care
Moisture maintenance: daily shower or bath, pat dry, immediate application of coconut oil to face, neck, trunk and the Home Apothecary’s lemongrass balm or breezy balm made specially for Brian by Stephanie. Same moisturizers after school, at bedtime, and during the wee hours of the night.
Infection control: periodic ACV baths (apple cider vinegar with “the mother”) or microsilk tub baths; application of mupirocin on open cuts if needed; lemongrass balm
Itch/scratch management: File nails to the nub; moisturizers above; itch-b-gone spray; ice packs; accupressure points, deep breathing and CBT techniques (cognitve behavior therapy). Recently started using a humidifier in his room at night due to humidity level less than 40%, which is extremely drying to the skin
3) MTHFR/Vitamins/Supplements–inconsistently taking b complex, vitamin D3, Zinc, NAC and 1/2 tab glutathione
4) Diet–not as good as it could to be but at least drinking water regularly

TSW is a rollercoaster ride through hell, but as with all rollercoasters, it will come to an end. Thankfully, we have met some incredible people along the way, and the strength that we’ve gained and the lessons we’ve learned will be beneficial to us and to others one day. Beyond the itch, life is good.

Have a blessed Christmas and a TS-free, Happy New Year!
Rosemarie

“I will restore you to health and heal your wounds” declares the LORD.
Jeremiah 30:17


Beyond the Itch

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

“Thinking Outside the Topical Steroid Box” in Boston

I’m working on my doctorate in physical therapy through Northeastern University in Boston, and, yesterday, I had the pleasure of participating in their RISE 2016 Expo. I did a poster presentation on Topical Steroid Withdrawal (TSW) in children, which summarized my 2015 research/paper “A Systematic Review of Topical Steroid Withdrawal in Children Diagnosed with Eczema.”  It was well-received and was one of the finalists for the research awards.

RISE was a great networking opportunity, and I was able to share information on TSW in children and adults, but BEST of all, I was able to meet Pam, Rob, and their son Ryan! Ryan is 30 months TSW and continues, like my son Brian and many others, on this rollercoaster healing journey.

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Pam, Ryan, Me

Make our kids’ TSW suffering count for something! Keep sharing your stories and spreading awareness about this potential adverse effect of topical steroids with your friends, family, acquaintances, doctors, and anyone who will listen. Help prevent future infants and children from having to go through the ordeal of TSW!

Continuously running slide show with healing picture progression of TSW infants and children

Continuously running slide show with healing picture progression of TSW infants and children (Collages were courtesy of Stephanie from The Home Apothecary.)

"Topical Steroid (TS) Spiral" leading to TSW

“Topical Steroid (TS) Spiral” leading to TSW in susceptible individuals

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TSW Research Group, LLC: Patient perspective in evidence-based practice is dedicated to research and education about TSW in infants and children

TSW Research Group, LLC and ITSAN brochures at RISE 2016 Expo

TSW Research Group, LLC and ITSAN brochures at RISE 2016 Expo

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Abstract # 1035 “Topical Steroid Withdrawal (TSW) in Children” is a finalist: Top 30 of 412 presenters and 1 of just 3 chosen from the Graduate Health Sciences category.

 

A special thank you to ITSAN for sharing their brochure on Red Skin Syndrome and to Pam from Creative Pear Marketing & Design, Stephanie from The Home Apothecary, Heather, Nicole, and the TSW Research Group, LLC think tank for their collective efforts in raising awareness of TSW and providing support and encouragement for those affected by TSW.

Poster references and poster & paper acknowledgements

Poster references and poster & paper acknowledgements

LORD, you establish peace for us; all that we have accomplished you have done for us.”

Isaiah 26:12


Beyond the Itch

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