Feature #17: Mireya & Sara

mireya-pinedaMireya P.

Age: 25

Career: AR Retention Specialist

When did you cease using topical steroids: April 15th 2016

What type did you use: Triamcinolone ointment

What is your favorite product for comfort? I love the Aquaphor ointment, Shikai Tea tree shampoo and conditioner (cured my scalp), and garlic. I used to take baths with Dead Sea salt or Epsom salt, ACV, tea tree shampoo and garlic (gave me so much relief and prevented infections).

What is the hardest thing to deal with during this condition? The hardest part of TSW is how unpredictable it is and not knowing if or when it will be over. Missing time with my loved ones and not being able to sleep!

What is the first thing you will do when healed? Spend the day at the beach with my loved ones and eat my favorite food.


Sara Evanssara-evans

Age: 26

Career: I co-own a Kombucha & Dairy-Free Ice Cream shop with my partner, but haven’t worked since August due to TSW.

When did you cease using topical steroids: August 20 2016

What type did you use: Triamcinolone 0.5%

What is your favorite product for comfort? CBD oil & Hanna Andersson pajamas

What is the hardest thing to deal with during this condition? The hardest part of this journey is the time I have lost. The itch disappears, pain fades, skin heals, but time is something you can never get back.

What is the first thing you will do when healed? The first thing I want to do once I am healed is lay in the sun with my pets.

Feature #16: Paula & Jane

paula-pPaula Perris

Age: 30

Career: Mother, Wife, Health Care Assistant up until TSW. I was in collage studying social care.

When did you cease using topical steroids: 15th June 2016

What type did you use:  Methotrexate, UV light theraphy (hand PUVA) prednisolone, Dermovate, Bethnovate, immuovate, fucibet, protopic, Elcon…

What is your favorite product for comfort? I always go back to silcock’s base but also use coconut oil, dipolbase, and cotton gloves.

What is the hardest thing to deal with during this condition? Not been able to touch my children without being in pain and the long sleeplessness nights.

What is the first thing you will do when healed? Take my children to the beach, hold their hands, LIVE and of course raise awareness!!


Jane Cavallajane-cavalla

Age: 43

Career: Art educator

When did you cease using topical steroids: March 2013

What type did you use: Mostly Betnovate RD, but have had orals and stronger ointments throughout my life.  Injections as a baby!

What is your favorite product for comfort? My own homemade shea butter and jojoba butter balm

What is the hardest thing to deal with during this condition? Itching, itching deep bone itching! Severe dryness/elephant skin, lack of sleep, no life outside of TSW, impact on family  and depression

What is the first thing you will do when healed? I am starting to have days of healing now, on good days – I can wear black!  Wear make-up, go out with friends and enjoy my life again, be more present as a mother, and consider the possibility of meeting someone.

Feature #15: Tanya Kong

tanyaTanya Kong

Age: 33

Career: Lawyer

When did you cease using topical steroids: I’m not sure exactly, it’s been over a year now.  I stopped after searching ‘eczema’ on the internet and Instagram and discovered the hashtag #tsw. I remember having one last prescription of steroids in my cupboard at that time, and telling myself once that supply ran out… I wouldn’t go back to the doctor.

What type did you use: Can’t say I paid attention to the names, but mostly a mild to medium strength brand. Often would just pick up the over the counter 0.5% hydrocortisone, but the last prescription I remember was from my family doctor –  500ml lotion bottles of 1% hydrocortisone with 2 refills.

What is your favorite product for comfort? It’s varied over the year or so. I hate using anything that isn’t natural. Right now coconut oil is working really well, which is weird as before it would make me extremely itchy. My skin seems to be taking it much better. If I put anything else on it – I get unbearably itchy, including any creams touted to be for itchy or dry skin with no fragrances etc. But of course, above and before anything else, this whole process has inspired me to learn SO much more about the body, how it works and how I can help my body with supplements, good food and nutrition. I find a big part of this struggle is the mental anguish, the insecurities, depression, anxiety, lack of motivation, loss of hope…Going to topical therapies is one method to quell the pain, but the biggest difference has been eating the right foods to control my moods and keep my energy up. I make a smoothie every morning and throughout the day supplement with daily doses of goat’s milk kefir (prebiotic), DHA and fish oils (skin texture, brain and nerve function), hemp seed oil as a source of omega 3 and vitamin E (skin, brain and nerve) ashawaghanda herb (stress and anxiety), ionic magnesium citrate (waste removal, relaxation, sleeping and quelling inflammation), maca herb (better mood, stress relief, sex drive), blueberries (skin and brain function), raw cocao (source of magnesium and zinc – helping heal the skin), zinc citrate (heals the skin), turmeric (calms inflammation, improves mood), chlorella (remove toxic metals from the blood), raw honey (can be mixed with anything in warm water – improves bioavailability of herbs and supplements– i.e. helps body assimilate and process these supplements so they work better!)

What is the hardest thing to deal with during this condition? I’m a lot better than I was. It’s been an incredibly challenging year. It’s difficult to relay to others the pain, and garner the understanding and empathy for someone who itches constantly, shuns their new reflection, and feels shame and embarrassment in public. The pain, distraction, stress, and anxiety can be unbearable. I’m a private person, and I don’t like to burden people with my personal problems, and I do believe we all have some kind of struggle to endure – whatever the form. But I think what makes this most difficult is explaining the complexity of my pain. Most nights have been a push, a call to god to be strong and power-through the unbearable itch, the soreness and missing out on life and being normal. Any woman wants to feel pretty, sexy and powerful in their own skin. Skin is a reflection of health, vitality, and sensuality. It communicates feelings and emotions through touch. To lose confidence, and self-worth; to see my bright light fade and watch myself and my face, neck, chest and arms deteriorate over the last year and not have the strength, energy or stamina to see the people I love and adore, then watch friendships I turned away from for fear of appearing frail or being viewed as ‘unpretty’ fade over time has been hard. BUT, I refuse to look at this as a loss! I’ve learned so much about my body and I’ve discovered the most real and authentic sources of love in my life. I thank it. Sharing this story means one step towards our collective evolution in accepting that the body is an intelligent biological system that knows how to heal itself.  Prescription drugs that suppress symptoms have the potential to wreak havoc on the body, more havoc than we ever imagined and often much worse than the original ailment. We MUST give credit to and appreciate the merciful intelligence ingrained and innate in our cells. Our body can heal itself, if we appreciate it for everything that it is, and allow it!

What is the first thing you will do when healed? I’m almost healed now…and slowly but surely, I’m feeling more and more comfortable going out, showing off my glowing personality and gaining back my confidence. I’ve had a few good days recently and have felt overwhelming joy over not itching in public and being able to present myself with confidence and positivity. I’m a wonderful person with much love to share when I’m not wincing in pain!

Interview #7: Maja Ster

OLYMPUS DIGITAL CAMERAMaja Ster

Slovenia

‘I am strong and I love myself for fighting this condition so bravely – worsen my symptoms, stronger my love. If I can fight this, I can do anything. I am unstoppable.’

1.When did you start using topical steroids? And why?

I started using topical steroids when I was around seven years old. I got Atopic Dermatitis and due to my symptoms my dermatologist prescribed me my first corticosteroids. My parents didn’t like them, but of course wanted to help me, so they followed medical instructions. I was very itchy at the time and had patches of red and dry skin on a few parts of my body (especially arm and leg joints). So we started applying steroids – who will you trust if not a doctor?

2. What was the name of the topical steroid?

Advantan

3. Were you ever prescribed more potent steroids? 

Yes. I was applying Advantan to my skin regularly through all my childhood, never been told that it could be mixed with a cream to be less potent. So I had been using 100 % topical steroids all the time (not very heavily though) and as a teenager realized that they had no real effect on my skin anymore. I got more potent corticosteroids around my 18th year from my dermatologist. They were called Elocom.

4. How did you find out about RSS?

I was searching through the internet to find a new solution for my skin, because I had one of my bad skin days that day. And I somehow found a blog, written by a girl from nearby town, saying that she had been two years into withdrawal of corticosteroids at that time. She wrote that topical steroids worsened her skin condition and as she had realized later – made her addictive. When I was reading those lines, I stopped breathing and I started to shake. She wrote about her withdrawal process, how bad her skin had been on the beginning and through the whole withdrawal, how she didn’t know if she would survive. I was crying and crying and crying. Because I knew at that point – that I was addicted too.

5. What made you feel you had RSS?

I knew when I read the first post on that blog. It was like someone would finally told me the truth I had already knew. Corticosteroids never felt good on my skin (apart from immediate effect it had on my skin) and my skin was like a wax or something artificial after applying them. I knew because my skin has changed in years of TS usage. Inflammation started to spread over my whole body and it appeared on places not typical for Atopic Dermatitis too. My outbreaks were unpredictable and uncontrollable, it came in seconds and bursted over my whole body.

6.What were your first symptoms?

Fizz with liquid inside and dry red burning patches of skin. Bone deep itch that was stronger than anything that I had ever felt in my life. In the first few days of withdrawal over my hands, arms and back. In the first month over my whole upper body and around month three over my whole body. Shivering of cold in the middle of summer (all together for four VERY LONG months), the shivers, feeling of ants crawling under my skin, heavy shedding of my skin, heavy sweating (for a few months, especially at night), hyper sensibility of skin to everything – from fabric to food and even to my own touch. Insomnia. Oozing, soreness of skin, deep devastating hopelessness and entrapment of my happy outgoing soul in my waning weak sore body.

7. Is your family supportive? Friends?

I am so happy to have my boyfriend, who is super supportive through this whole process. My friends too and my family – it is hard to accept something so brutal, so they needed their time to accept / understand. It was (and still is) hard for them too.

8. Have you ever been to a hospital for this? 

No, fortunately not.

9. What has been the hardest part of this condition?

Accepting that this is it. That everything I have loved and cared about has to be put aside for an indefinite time because my symptoms are taking everything I have away from me. My time, my energy, my patience, my will to live. Itch itself has been so devastating that after a ‘good’ itch attack (sometimes on a bad day even on every two hours or less), I have been left with nothing. Empty shell. All my energy was wasted on that insane itch and to stay sane I had to turn myself off afterwards. I had to stop thinking about everything else and had to focus on just being.

Accepting that all my dreams, desires, wishes, all my hard work to became good at something, to accomplish something, had to be forgotten for that long never-ending period of time. Accepting the feeling of frozenness in the moment, when (almost) everyone around me had lived their lives on like nothing had happened.

Like I would be nearly dying next to them and they wouldn’t even notice. That was the worst.

The inability to explain to my closest people what I was going through in the way that they would really understand. And the inability to do all those things I had wanted to do so badly (from going for a walk or shower without pain to doing my hobbies – later in the process I started to hanker badly for creativity, productivity and physical activity).

10. How long have you been in withdrawal? 

I have been withdrawing from 28. January 2015, so one year and 9 months until now. I am not over with withdrawal yet, but I am feeling much better now. I think that it will take one more year or even two or three to be completely healed.

11. What do you use as comfort measures during this?

I had a no-diary, no-gluten and no-sugar diet for my first 8 months of withdrawal. I don’t know if it has helped on the recovery process, but at that time I reacted to practically everything and I was using the diet as my ‘power’ to have at least something in control. I am using moisturizer creams now (Avene Xera Calm Balm and Zinc Oxide) and I bath when my symptoms worsen (with apple vinegar or sodium bicarbonate). I use tubifast strapping in that case too.

12. Are you employed? Has this affected your job status?

Yes, I am, as a student worker. In the beginning of Topical Steroid Withdrawal I had been very lucky to just complete my studying, but had not yet graduated – and I could take one extra year off as a student. I didn’t had to work so hard that year, because I had still lived with my parents, so I didn’t had to worry about my finances so much, which was a life saver.

I had to stop many student jobs and hobbies on the other hand, which affected my life a lot. And it was hard (and still is) starting to do those things again because I lost so much specific knowledge after a year and a half of not doing it. But I’m starting to learn and explore again and I am ready to live a much fuller life now.

13. Have you gone to therapy/wish to go to therapy because of this condition?

I think that I will recover my whole life from the withdrawal. From time to time I cry heavily remembering my worst months and meeting my darkest hidden demons, which is a kind of therapy too.

I believe that my therapy will be all the things that make me happy and touches my soul. I will be recovering through dancing, being with all the people that mean the world to me, hiking (hopefully without the itch) and deep conversations with myself and my closest people from time to time.

I truly started to love myself through that process and that is why I am grateful for it. I believe it was meant for me to overcome TSW and it made me know myself 100 times better.

I see my path now. And I’m ready to start walking it.

14. If there is one thing you could say to another sufferer, what would it be?

You are strong and very brave. Don’t ever doubt about that. If life had thrown you into that terrible process, you had to be strong and brave enough to fight it, why else would you be the one thrown there? Don’t step on the path towards healing in the role of the victim, but tell yourself that you can do it, that you are a victor!! Embrace the pain and love yourself deeply through that process. It is not fair, it could be prevented, but don’t stress about that through your darkest nights. Focus on surviving, do all you have to do to come through. And remember, it becomes EASIER and it ENDS eventually. IT REALY DOES!

Be grateful for having the symptoms that won’t last your whole life, but ‘just’ a few years. That may sound negative, but it really puts things in perspective. It could be worse! You can always be grateful for something, and that makes life (and even the symptoms) much more tolerable. Be your own comforting inner voice saying: ‘I am strong, I am beautiful, I can do anything, I will manage the next minute / hour / day and I will NEVER give up!’


Spectacular, Maja! Thank you for your interview!

Different Atopics Podcast

Dr. Matthew Zirwas, an Ohio MD, gave a very poignant (albeit slightly arrogant) talk in Arizona this October about atopic dermatitis in adults and how he categorizes this condition in order to give the right treatment.

He starts off with saying he is able to fix 90% of his patients. About 1 out of 10 of his patients he just isn’t able to truly help. Perhaps they are those with Red Skin Syndrome?

He checks IgE levels to see just how atopic they are (and to help initiate compliance).

Overall, I don’t appreciate the way he spoke about patients (very condescending), and even stated he had no problem lying to patients to get compliance, but I do wish to write about his lecture because it had interesting points.

One of the first things he began to mention was how awful the mainstream treatment for atopic dermatitis is for patients, especially when it comes to topical steroids. Dr. Zirwas gave a scenario of what usually happened when he was a resident. His doctor would state,

“Here is your triamicilone ointment, use dove soap, wear cotton clothes, stay cool, don’t sweat too much, don’t shower too much, good luck.” And we should have said as they were walking out of the door, “you’re not going to get any better…”

He knew there needed to be a change. He wanted to help people actually get better. He said  that topical steroids actually make the skin barrier worse. It may seem to help the symptom in the short run but it’s not fixing the problem, it’s actually causing a problem. He uses the analogy of using prednisone on bacterial pneumonia. The patient will feel great 12 hours in, but then will die because the steroids will have allowed the infection to get worse.

“Topical Steroids is probably one of the worst imaginable things you could do. If you were going to say ‘What’s the worst thing you could do for atopic dermatitis, it would be topical steroids.”

Now, I am going to get a little scientific on you. He used A LOT of big words. The lecture was riddled with jargon.

Dr. Zirwas explained the role of filaggrin for our skin. It is what brings together cyto-skeletal proteins. So, he uses the analogy of a hollow brick or shell as your stratum corneum (the outer layer of skin), and the filaggrin is what hardens it so nothing harmful can get in. It then degrades it into amino acids (which is our natural moisturizing factor, acting as a retainer for moisture in the outer layer of skin). Furthermore, it is a source of urocanic acid (a UV absorber). For those of us who are deficient in filaggrin, we are susceptible to friction, dryness and scaling, and fissuring (cracking).

While explaining this, he concludes that we shouldn’t be calling our condition atopic dermatitis, but cutaneous barrier disfunction. The biggest problem is our broken skin barrier.

Normal skin is like a wet sponge, moist and flexible and hard to tear. Atopic skin is much like a dried out sponge that’s hard, dry, and cracks.

He moves on to the main topic of the lecture: his 4 categories and how to treat them.

When it comes to mild-to-moderate atopics, it’s usually just water and irritants penetrating into the skin. With severe atopics, it is usually proteins leaking into the skin. Finding out which proteins these are will help you understand which treatment will work.

Main Goal: 1) Improve Skin Barrier and 2) Reduce protein exposure

The 1st Category, which everyone fits in, is barrier disfunction. This means lichenification, xerotic, usually worse in winter, and dull red. Treatment: physiological moisturizers (Ceramid based moisturizers). He feels these are effective because they penetrate the stratum corneum (outer skin layer), into the keratinocytes, into the golgi, and helps create natural skin moisture.

Ceramide based products, like EpiCerum, take time. Dr. Zirwas says no one will see results overnight. They need at least a week for results.

Here is where I get a bit off with his method, but it’s his way…

He mixes clobetasol steroid solution in with the creams for patients. He tells them to take the 50mg solution and pour it into a tub of new CeraVe (found at your local drug store) and use that for a month, 2x a day. That is a super potent steroid. Why give someone THAT potent of a steroid, regardless that it is diluted? His reasoning is that he feels the physiological cream makes the steroid less harmful to the skin barrier. Is there scientific evidence for this? I have no idea. I wish there was. And I am not sure if he has them do it for more than a month. If it’s just a month, I can kind of calm down about it, but if he puts his patients on this for a while, then it worries me.

The rest of the treatment for your barrier is: Shower at least 2 times a day and put a physiological moisturizer on right after – use a shower filter – double rinse your laundry or use vinegar in the mix – and use DryerMax dyer balls. 

He also went into talking about how he feels ointments are not the best choice for topical steroids. His logic is that steroids are looking for the most oily environment. The more oil in our vehicle of choice (like an ointment), the less likely the steroid with leave and penetrate into the skin. So he sees it as ointment is the worst, then cream, then lotion, then solution is the best. I can see his logic in this, but I don’t know of any scientific research backing this. I know ointments are more occlusive, so I would think, no matter what, the steroid would penetrate.

Category 2: Airborne -type

Aesthetically, men have what Dr. Zirwas calls an ‘inverse t-shirt’ pattern. Everything under his shirt is fine, but all the rest of his skin exposed to the outside is not. And women usually have facial dermatitis. Also, these patients usually have asthma and bad itching at night time.

He feels these are the hardest to treat. The problems are protein ‘allergies’, such as dust mites, pollen, ragweed, etc. These allergins are protease, which means they cause itch and worsening of the condition. These are the TH2 and TH17 triggers (which, when imbalanced, cause issues).

His Treatment: Mattress and pillow case covers (keeps the dust mite poop down) – washing at least twice a day, women washing their face as much as they can (and then putting on physiological moisturizers)

Category 3: malassezia driven

It affects the head and neck area. Usually they have eczema as children, but then into adulthood, it gets bad on their face.

This is his favorite type to treat since it’s easiest to him.

His Treatment: Itraconazole (check LFTs — which is liver function) 100mg 2x a day for 2 months, and ??? on weekends 100mg a day (literally could not understand what he said) – or- Ketoconazole (always check LFTs). He feels the former drug is safer than the latter, and feels orals must be used, not anti fungal creams.

Category 4: staph driven

It usually looks like moist atopic dermatitis with fissuring, crusting, and scabbing. Fairly bad eczema but it explodes/flares

He says he doesn’t swab (which made me angry) because he feels most of the time it isn’t MRSA so he doesn’t need to check. Well, I had MRSA on my skin in Month 8 of my withdrawal. If he hadn’t swabbed me, then I would still have had MRSA.

He says there hasn’t been a decent research article written about this. He also touched on antibiotic resistance and how we will be screwed possibly down the road.

His treatment: Keflix, Doxycycline or Bactrim for 4 weeks – Rifampin for 1 week in the beginning paired with one of three above (says it’s for decolonization) – Bleach bath once a week with clean towels, PJs, and sheets – Antibacterial washes (he likes Dial moisturizing antibacterial body wash) – avoid ointments (since he said most are contaminated with bacteria) – Neosporin 1 week per month on nostrils

Also, another reason for staph- driven dermatitis is decreased cathelicidin production. That means Vit-D production. You need to take LARGE doses, about 4,000 units a day. He says a study says it’s safe to take that much. No idea where that study is, but you can try and find it.

After explaining all of the different categories, he goes into some of the other treatments he gives on top of these if the patients are really bad. Things like immunosuppressants (Cellcept, Cyclosporin, Methotrexate). He says he barely prescribes these things since he can usually get things under control with his normal treatments.

Overall, it was informative. His method of treatment interests me, but not so much the compound steroid with CeraVe. I wonder how these patients would fair without the use of the steroids and just the other elements of his treatment.

 

NEA Questions for TSA

“Although topical steroid addiction or red burning skin syndrome had been mentioned as possible side effects of topical steroids in a 2006 review article in the Journal of the American Academy of Dermatology, no statement was made regarding this illness in the new guidelines (2014). This suggests that there are still controversies regarding this illness.”

This review, written in Japan by many dermatologists, brings up important points regarding TSA and how it is being discussed and misrepresented in the dermatology field.

The NEA, National Eczema Association, had many questions that these dermatologists answered truthfully.

1. How do you define steroid addiction?

The review went into a brief history of where the term “addiction” was first used (Burry, 1973), as well as other doctors whom researched this phenomenon. The conclusion: “TSA is the situation where skin develops more severe or diverse skin manifestations after the withdrawal from TCS than at preapplication.”

2. What are the clinical findings of steroid addiction?

They felt that clinical findings should be described separately before and after withdrawal. Before withdrawal, skin may be more uncomfortably itchy and show signs of the TCS (topical corticosteroid) not working as well as before. “Dermatologists often explain pruigo as a chornic and difficult-to-treat type of eruption seen in patients with atopic dermatitis. However, it is often a sign of addiction.”

After withdrawal, the initial erythema often spreads to other areas day by day. This eruption also spreads to places where topical steroid use may not have been used. There is a range of cases, spanning from mild to severe. After the initial rebound period, the next phase is usually dry and itchy with thickened skin. “The addicted skin becomes normal as time passes, and the increased sensitivity after withdrawal decreases. The entire course can take from weeks to even years.”

3. What do the skin lesions look like, and how are they different to eczema?

They said that TSA skin lesions look similar or resemble the original skin disease. I somewhat disagree since the only way I knew I was addicted was because the eczema wasn’t the same anymore, however normal eczema and TSA do share many similarities.

The usual distribution of atopic dermatitis is the neck, knees, elbows or flexor parts of our body. With TSA, it can be present anywhere on the body. Also, after withdrawal, the skin becomes thickened.

4. Where on the body does it occur?

“Addiction can affect every part of the body.”

5. What strength of steroid and usage pattern leads to steroid addiction?

“What seems accurate is that longer periods of application and more potent strength of TCS lead to more frequent addiction. Concrete data is very difficult to obtain because patients usually do not have a record of the applied TCS.” Not only that, but if this is not recognized, how do we obtain accurate information?

From their understanding and their own experiment (seen at bottom), they were able to reasonably attest that TCS should not be used for more than 2 weeks. They also state that using topical steroids on and off intermittently doesn’t necessarily prevent addiction. There isn’t enough evidence to prove either side.

6. How is steroid addiction treated?

“It goes without saying that TCS must be withdrawn in addiction patients.”

They articulate that dermatologists usually misdiagnose this as an aggravation of the original eczema and prescribe potent steroids and insist that TCS never suppresses the HPA axis. As I’ve shown in Topical Steroid Label Part I and II, that is simply not true.

They also state that, paradoxically, they feel systemic steroids may help during the rebound period. I am not sure where this evidence is based since I, myself, tapered twice with oral steroids only to flare badly once tapered off.

There is also a discussion of how patients may not be able to taper their topical steroids. “Conversely, there are sufferers who cannot decrease the amount or potency of their TCS at all because they experience rebound immediately if the medication is decreased.”

7. How common is steroid addiction syndrome?

They are open and say there are no statistics regarding the prevalence. As I said earlier, how are we to know this information if the syndrome is commonly misdiagnosed? However, they did their own study over 6 months. It showed there were about 12% of their subjects who were addicted, which left a proportion of 88% not addicted. They make the very shrewd acknowledgement that “… we should not pass over the fact that the remaining 88% are also potentially addicted patients.”

Now, the review closes on three important problems seen in the new AAD guidelines regarding the viewpoint of how to prevent TSA.

One, the proactive approach discussed in the guidelines leaves little room for the eczema to heal on its own as shown in some children and infants. Proactively, you would use the steroid 1-2 times a week, while reactively you’d use it only when you have a flare. If you are continually using the steroid, regardless of showing signs of eczema, it tells the story that eczema sufferers will always need TCS. This approach does not help initially uncontrolled patients, in whom patients with TSA would most likely be included.

Two, the use of tachyphylaxis for the term TSA is not correct. It does not appropriately represent TSA because “tachyphylaxis is usually used to faster-onset responses than TSA,” and can be misguiding. Many TSA sufferers may not go to see a dermatologist anymore, but that doesn’t mean they don’t exist. If these two terms are mixed up, it shows the fact that most dermatologists have not experienced seeing patients during withdrawal for TCS.

And third, the topic of under treatment. If someone has TSA, then steroid use must be stopped and cannot be seen as an under treatment and therefore they need more steroids. This does not help TSA patients.

And many questions are raised because of this — “Did the number of patients with adulthood atopic dermatitis increase after dermatologists began to prescribe TCS several decades ago? Why do patients with atopic dermatitis only complain or worry regarding TCS use? Until dermatologists can clearly answer these questions, patients with atopic dermatitis have a reasonable right to choose their own therapy after receiving sufficient medical information to make an informed decision.”

And, in my experience, that sufficient medical information is rarely available. Having excessive warnings about under treatment may overstep a patient’s right to choose the treatment they wish to use by inducing a prejudice that they aren’t wanting to treat their condition correctly.

Screen Shot 2016-09-04 at 12.45.18 PM
Above pic: normal, healthy skin before TS use; Below: 2 weeks after TS use (.05% clobetasol propionate, twice a day)

Review: Topical steroid addiction in atopic dermatitis – Mototsugu Fukaya

Feature #12: Carol & Bara

carol-arsenaultCarol Arsenault

Age: 67

Career: Graphic Artist part time

When did you cease using topical steroids: May 2015

What type did you use: I used Ultravate for hand eczema and  clobetasol for my lip

What is your favorite product for comfort? Favorite product was neem cream and dead sea salts

What is the hardest thing to deal with during this condition? Hardest part was the itching, not sleeping, clothes bothering me and the constant thinking about suicide.

What is the first thing you are going to do when you are healed? First thing I did since being almost cured – visit my sister.


Bara Křepínskábara-krepinska

Age: 15

Career: studying book culture in high school

When did you cease using topical steroids: 1/26/2016

What type did you use: I don’t remember what I first used as a baby, but my eczema disappeared, then reappeared with puberty – I used mild steroids like Advantan on and off for 3 years

What is your favorite product for comfort? Hairbrush for sratching, comfortable cotton hoodies and pajama pants

What is the hardest thing to deal with during this condition? It happened the year I was finishing primary school. The hardest part was losing all the months I could have spent with my friends lying on sofa under blanket and eating ice cream. I lost time in my life I can never get back and I’m so sorry for it.

What is the first thing you are going to do when you are healed? I have lots of things on my bucket list! Get multiple tattoos, pierce my nose (and other body parts), cut my hair and dye it crazy colors, wear bold makeup, wear wool, lace etc, grow long nails and do different nail art every day, and take long showers and long baths !