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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

See 9/6/16 pictures

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

Day 352 – Day 364: THE END OF MY FIRST YEAR OF TOPICAL STEROID WITHDRAWAL (TSW)

ONE YEAR!?  HOLY MOLY.  I am believing that the worst is over.  This year has been hell.  Utter hell.  And I’m ready to move on.    The end of my first year was spent with the same old same old.  Dry but doable with makeup.  It loves moisturizer.  I ended the year with a  flare.  From moving and maybe just from my 1 year flare….

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Day 361 .. THE MOVE!?

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Skin was so calm.. I felt great.
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Month 13 –>

Peace Out Eczema

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

Day 387 – Day 395 WHIPLASH End of Month 13 Topical Steroid Withdrawal

I’m a bit behind….  This is the end of Month 13… the end of March 2015….

This post is a perfect example of how devastating TSW can be.  The highs give you a false sense of security.  Like you’re more healed than you actually are.  Then when you flare, it makes it seem like it’s worse than it actually is and you feel devastation.  I was feeling great!  Skin soft.  No pain.  MINIMAL itching.  Minimal dryness.  Spent some time in the sun.  (I am only posting the swimsuit pics so you can see how great my skin was).  Then, the day after I laid out in my swimsuit, I flared massively.  I just wish it would be all or nothing.  But we’re powerless and at the mercy of this completely avoidable and unnecessary disease.

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Peace Out Eczema

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

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

Day 352 – Day 364: THE END OF MY FIRST YEAR OF TOPICAL STEROID WITHDRAWAL (TSW)

ONE YEAR!?  HOLY MOLY.  I am believing that the worst is over.  This year has been hell.  Utter hell.  And I’m ready to move on.    The end of my first year was spent with the same old same old.  Dry but doable with makeup.  It loves moisturizer.  I ended the year with a  flare.  From moving and maybe just from my 1 year flare….

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Day 361 .. THE MOVE!?

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Skin was so calm.. I felt great.
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All day… felt amazing… 
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Til I laid down to sleep… Then Hell broke loose.  
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Month 13 –>

Peace Out Eczema

Topical Steroid Withdrawal Month 19.5

Over the past couple of weeks I had stopped taking Ciclosporin but my skin just wasn’t getting better so I decided to use it again the other day as I need to be able to work. I’m pleased to say doing this has helped to kick-start it and it is working again.

My visit to the dermatologist this morning ended up being surprisingly fruitful. She wants to keep me on the Ciclosporin for a year and then I will need to come off again, which is fine by me. I enquired about blood testing for deficiencies which she gladly agreed to do and said Vitamin D deficiencies can be a huge culprit in eczema cases. This I already knew as I have taken the supplements in the past but it was nice to hear her say it.

She also suggested taking my IgE levels again for cats, dust, pollens etc. in view of referring me onto an immunologist for desensitisation. I am so bloody happy. Not once when I asked about this in the past at my previous hospital was I told this would be possible so it is nice to have that avenue to venture if needs be. However I am also keen to find out my test results now that I am nearly 20 months into my TSW. Before quitting steroids I used to have acute allergic reactions and was even given an epi-pen as a precaution as it was unknown as to whether I would go on to develop anaphylaxis. However I noticed as time went on during my TSW I could stand to be around cats and have more exposure to allergens without rushing to A&E.

I also asked about Dupliumab which is what my previous derm wanted me to trial but I was fed up of being a guinea pig. I only really mentioned it to keep her well off the steroid route but she appeared to be happy with this option though the hospitals in this area aren’t trialing it as of yet but I would be a suitable candidate if it came about.

When she examined me she asked what I was using topically as my skin is currently very dry. I told her white soft paraffin only, to which she asked about steroid use. I said my skin seemed to have become addicted and they weren’t working for me any more and to my complete surprise she said “Yes, that can happen.” What?! This is the same lady who said the complete opposite last time I saw her. No doubt she’ll say differently again next time I see her but even still!

I have come away feeling very happy. I know derms are the enemy but today she seemed to be on my side and I left unscathed apart from being stabbed in the arm of course.

Happy days :)

Here’s a silly unflattering pic I just took to showcase the paleness:

For reference this was me the other day:

I Have Eczema

Day 457 – Day 486: Month 16 Topical Steroid Withdrawal Redskin Syndrome

Well, month 16 was interesting.  I started using Eucerine Restoraderm on a regular basis, showers became quite enjoyable, and I visited Portland and loved it.  I still have crap skin on a regular cycle, but the crap is becoming less severe and the good is becoming more predictable and regular.  I feel like the restoraderm is helping heal the skin barrier.

SLEEP:  Sleep is better.  I slept brilliantly in Portland because I was on an air mattress and it was 50’s at night.  I didn’t sweat.  Now, at home in hot Texas on my pillow mattress I sweat and wake up itching.   On the whole, sleep is MUCH more consistent and regular.  I don’t feel as exhausted all the time.

HIVES:  Hives are popping up as of the end of this month.  They are uniform bumps and are itchy initially and then just take a while to go away.  They are only on the still damaged skin.  The skin that’s really red after the shower.  The skin that goes to hell when I flare.  I’m assuming this is a good sign…?

BURING/STINGING:  So, showers were moderately painful at the beginning of this month.  The water initially was fine and then once my pores opened up, it stung unless I used VERY warm water.  Then, once I got out, it stung for a good solid 15 minutes straight.   Once I started using the restoraderm, it got better.  The restoraderm STUNG when I used it for most of this month with decreasing intensity as the month went on.  It would sting when I rubbed it on and then as soon as I used the water it stopped.  Then using the lotion after caused the after sting time to shorten.  By the end of the month, the wash didn’t burn and the after sting was minimal.  So, definite improvement.

SWEATING:  Dude.  COME ON.  Sweating still stings and burns and itches like hell.  The surface area is definitely smaller!  It’s now only my neck, face, and a little on the shoulders… whereas before it was my whole body that was under a fire ant attack.  Living in the texas heat is hard.

CLOTHES:  I’ve started wearing…wait for it… SHORT SLEEVES AND TANK TOPS!  gasp.

Anyway… on with the pics.


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TSHIRT!!!!



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First time in a tank top in a LONG time.  Went to the mall with my big girl!



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I ate cookies at the mall.  Gluten and dairy free… but a lot of them.  Paid for it.  

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At the end of the day sometimes I have these flakes.  Super hot.



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No makeup… mild skin… Lips are meh.



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Legs have been painful.  Hurts to shave.




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AFTER SHOWER




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Few hours later.



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Ate gluten free pretzels on the plane and paid for it…
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These kind of hives all the time.



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I ate an apple while shopping and the juice on my hand gave me hives.  And irritated my lips.



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Dryness subsided a bit but the hot redness comes and goes.



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Spent the whole day outside and in a tank top!  JOY!!



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My skin reacted crazy coming back home to the texas humidity, heat, and pollen…

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Peace Out Eczema

Day 487 – Day 517: Month 17 Topical Steroid Withdrawal

(July 1 – July 31 2015)
Hi guys!  Sorry, it’s been a while.  My life has gotten busier and busier as my skin has gotten better and better.  I still flare, but I get over the flares fairly quickly.  This month I had a lot of hot red bumps.  They would just appear out of nowhere or something would set me off.  However, this month I wore tank tops!  Please keep in mind that I don’t take a lot of pics on the good days.  Most of the pics I take are to document the bad skin.  

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These bumps appeared out of nowhere and felt kind of hot.

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The wrinkles are part of the healing.

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Grocery store lights are the worst when I’m flaring.


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Wearing a little makeup.  Skin was very calm.  Still have wrinkles that I think will go away. 




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First time in shorts and a tank top in a LONG time.




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Flaring




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About as bad as my neck got this month.



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Wrists have improved so much since the cetaphil

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With makeup I looked Like this a lot. FINALLY got my hair cut!




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LOVE my icepacks after the shower…




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Peace Out Eczema