prescription – Preventable: Protecting Our Largest Organ

Feature #23: Katie & Ashley

Katie

Age: 21

Career: Unemployed, had to medically withdraw from school

When did you cease using topical steroids: July 2015

What type did you use: I used Triamcinolone 0.1% for 8 years, had a few rounds of oral steroids/shots of Kenalog

What is your favorite product for comfort? Lemongrass Balm and Frankincense

What is the hardest thing to deal with during this condition? The hardest part of TSW is the physical pain. There are days where I’m in so much pain that I can’t even think straight. The ooze is a close second though.

What is the first thing you will do when healed? First thing I’m doing is taking a trip somewhere fun and exciting. I’m not sure where yet, but I’m going to make sure to live it up and not to take life for granted. Oh, and I’m also gonna drink a margarita.

Ashley

Age: 29

Career: Attorney and Dance Teacher

When did you cease using topical steroids: November 24, 2015

What type did you use: I used many different types, but the last two I was on were triamcinolone and clobetasol

What is your favorite product for comfort? 3 things: 1. White t-shirts- they’re great to wear around the house because they are loose and breathable and I also use them to wrap my arms or neck during flare-ups; 2. Benadryl to help me sleep during the unbearable itchy nights; 3. Aquaphor

What is the hardest thing to deal with during this condition? Sleepless nights dealing with the bone deep itch & trying to maintain as much of a normal life as possible

What is the first thing you will do when healed? Workout and take a pain free shower

Interview #9: Mattiel Brown

Mattiel Brown

Atlanta, GA

“All Things Must Pass” – George Harrison

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

When I was about seven years old, I used Desonide cream very sparingly for eczema around my mouth and ears. This was not the period where I became addicted to steroids, though. I was fine as a teenager and only experienced very occasional, small spots of eczema.

2. What was the name of the topical steroid?

Desonide .05% cream (and I also used some Protopic)

3. Were you ever prescribed more potent steroids?

Yes, but I didn’t use the whole tube and not for very long.
Triamcinolone cream. Used for small spots of eczema around mouth.

4. How did you find out about RSS?

Video of Dr.Rapaport’s interview on youtube.

5. What made you feel you had RSS?

My eczema was spreading to places that I’d never had it before – my neck started breaking out, my back… it was just a sign that something was NOT normal.

6. Were you diagnosed by a doctor? Did you have a supportive doctor?

Diagnosed with eczema, told that it was a very hard disease to treat. I did not have a supportive doctor until I met a “naturalist” doctor named Dr.Maziar Rezvani in Marietta, GA. He helped me through the later stages of my withdrawal after I explained the situation to him. Very supportive doc.

7. What were your first symptoms?

Rashes spreading to unfamiliar areas, very sensitive skin, burning, swelling eyes, yeast infections, and after using Protopic I started to get styes in my eyes and even a cyst in my arm. These were all very strange symptoms to me and a sign that something was not normal.

8. Is your family supportive? Friends?

Yes, my mother and boyfriend were extremely supportive and believed in TSW after I explained the situation thoroughly.

9. Have you ever been to a hospital for this? Why?

No.

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

Physically, it was very difficult. But mentally – I was really a wreck at about one year into my withdrawal and I had to see a counselor. I was in a very, very dark place and couldn’t sleep, hated having to go through the day, and was in a lot of pain – I was so depressed. Worst experience of my life was the mental toll this took on me.

11. How long have you been in withdrawal?

April 2014 / August 2016. I would say it took 26-28 months for me to say I’m definitely healed.

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

I got a prescription for muscle relaxers to help me sleep.

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

I am employed and I stayed employed during my whole withdrawal. The only time I took off was two weeks last summer to collect myself mentally when it was getting really tough.

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

Yes, I had to see a therapist. It helped me a lot – just to have someone to talk to and to see their outside perspective.

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

This will be one of the hardest things you will ever have to do in life. Period. It will end, but it is a long, difficult process and you will need support from friends and family (and hopefully a doctor). It’s a very hard situation to explain to other people (especially traditional dermatologists), and it’s even hard to understand what your body is going through when you’re suffering from it. And as hard as it is to believe, you will look back on this experience as a tiny fraction of your life. A period of your life that REALLY sucked but it ended. It DOES end.

Thank you for such a terrific interview, Mattiel!

Interview #8: Stephanie Miller

Stephanie Miller

Brooklyn/Queens, NY

‘At the end of the day, we can endure more than we think we can’–Frida Kahlo

‘Be easy, take your time. You are coming home to yourself’—Nayyirah Waheed

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

I think it started when I was about 6. I was definitely in elementary school at the time. I developed regular eczema when I started a new school, and my parents took me to the dermatologist. That’s when they started to give me ‘rash medicine’ as my family always called it. I never went to bed without putting “medicine” on my skin.

2. What was the name of the topical steroid?

I don’t remember the first potency they gave me, but I do remember they kept prescribing more potent ones as my body became ‘immune’ to the less potent ones. That’s what the doctors always said was happening…*eye roll*. I remember having tubes of all types of steroids all over the house, especially the tiny tester ones. Doctors would always give me handfuls of those.

3. Were you ever prescribed more potent steroids?

Yes, I used every topical steroid under the sun until they prescribed Clobetasol when I was 14. During the summer before high school, my family moved to a new town, and I remember my skin getting better. Between high school and college, eczema was never an issue. I may have put dabs of steroids on my skin every now and then, but it definitely burned out as doctors said it would. However, during the summers between college, I started working at a summer camp in my old hometown. Within 3 weeks, my eczema came back. But then, when I would fly back to Massachusetts where I went to school, the eczema would go away. By my fourth summer at the summer camp, my eczema returned ferociously. I went to the dermatologist where they immediately gave me Clobetasol and Protopic. They said use the Protopic regularly, and the Clobetasol occasionally. Well, the Protopic didn’t work…so I used Clobetasol…and boy did that work wonders. I am pretty positive that’s when my addiction started. After that summer, I moved to NYC. It was September 2011. My skin was still a major struggle, but I didn’t let it stop me. I had my tube of Clobetasol just in case. For the record, I used it as prescribed….”twice a day (morning and night) for 2 weeks”. Usually I would only need it for a week, then my skin would clear up! But, as the story goes, when that week or 2 weeks of using the cream ended, my “eczema” would come back with a vengeance within 2 to 4 weeks. I thought I was allergic to the city, but I loved it too much to leave. From 2011 to the beginning of 2015, that was my struggle. My right palm suffered the most, but I would also get small patches on my arms, my torso, and legs. I knew I shouldn’t be using steroids long term, so I tried to avoid it. I would only use it when my skin became unbearable. The relief was always worth it even if it only lasted a month, 2 weeks, or less.

4. How did you find out about RSS?

Back in January 2015, I used topical steroids for the last time, and my “eczema” came back within a week and started to spread to places I had never seen it before… and it was spreading fast—the backs of my hands, big patches on my legs and arms, my left palm. That was a huge wake up call. I decided to take control of my “eczema”, and went on the autoimmune protocol diet for 6 weeks. I was promised that I would see great healing after a month, but my skin only got worse and worse. As I was doing research on ways to heal eczema naturally, I kept coming across ITSAN. When I initially learned about it, I was in denial. I was convinced that if I kept up with my diet, I would heal. Well that didn’t work. I stayed on a pretty strict diet for 5 months, and my skin only got worse.

5. What made you feel you had RSS?

As I continued my research, ITSAN kept popping up on Google. Once I actually looked at the pictures closely, I knew instantly that my skin looked EXACTLY the same. I also remember looking at Briana’s blog, and her pictures looked like my skin! It was surreal. I thought I was looking at my own hands, my own legs, my own arms. Then I distinctly remember watching the animated videos that ITSAN made…that story was my story….I stopped breathing and burst into tears. I felt a huge weight lift off of my shoulders. I remember watching Dr. Rapaport’s interview immediately after and felt a huge sense of relief. I WAS GOING TO BE ECZEMA FREE. The journey would be hard, but I WOULD HEAL.

6. Were you diagnosed by a doctor? Did you have a supportive doctor?

Nope and nope. I diagnosed myself.

7. What were your first symptoms?

Spreading red rashes that began to cover my hands…and I mean my whole hands. Also, within 3-4 weeks, I had the infamous red sleeves and pant legs.

8. Is your family supportive? Friends?

I don’t live near my parents, so they didn’t have any control. They were emotionally supportive from afar, but I do think they would have questioned my choice if they actually witnessed what I was going through. Now that I have made a ton of progress, they are very supportive of my decision. My friends were supportive, but I kept very quiet about it for the first 4 months. I didn’t start owning the condition until month 5 or 6. Even while I was suffering during the worst of it, I was so disconnected from my body, that I wasn’t feeling anything. I covered everything up and numbed myself as I continued with my life9. Have you ever been to a hospital for this?

9. Have you ever been to a hospital for this? Why?

Oh yes. Back in May of this year, 2016, I was 15 months or so in. I was still suffering terribly from my anniversary flare. It had spread full body, which was a lot worse than my initial flare. At the very end of April, I suddenly felt a strong pain on my right side…right under my armpit. Within, 2 hours I got a fever of probably 102. I went home, tried to sleep it off for the next two days, but my fever wasn’t breaking and the pain kept spreading. On May 1st, I went to urgent care. They took my vitals and said I had to be rushed to the hospital. I was going into septic shock. They took a ton of blood, hooked me up to antibiotics and fluids. I don’t remember the chronology, but essentially within a day or two, they found strep and staph in my blood. My lungs were filling up with fluid, and my right breast was infected with mastitis. They also gave me a hydrocortisone IV, which I was very hesitant at first…but at that point, I just wanted them to save my life. My skin cleared up for a week! Woohoo! It looked strong and beautiful. Looking back, I’m grateful that I agreed to it because the nurses were taking my blood multiple times a day. That would have been even more of a nightmare if my skin was still flaming red. However, after the first week of clear skin, the redness and rashes started to creep up on me and grow, which proves that it was the steroids that caused all of my problems. Anyways, I was in the hospital for a total of 17 days. I had reoccurring fevers for most of the two weeks because my body was still trying to fight the infection. I’ve made a full recovery though!!

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

The rebound flare definitely. By January of 2016, I thought in my deepest heart that my skin was only going to get better. By February, my anniversary flare started to spread. By April, I was in an almost full body flare. I didn’t struggle with that at all during my initial one. The days when you wake up and know it’s only getting worse are the hardest. You never know when you’ve reached the abyss before you turn a corner and start to heal. You just have to breathe, suck it up, and do whatever you can to stay comfortable.

11. How long have you been in withdrawal?

I’ve been at it for almost 21 months. Unfortunately, now I am struggling with the fact that since I got the hydrocortisone IV in the hospital, I’m technically not 21 months into my withdrawal. I’m almost 6 months steroid free. But, I’ve been suffering for 21. I started my initial withdrawal unknowingly in mid January of 2015, and I’m doing really well right now.

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

Anything to make me laugh. Last year, I re-watched all 10 seasons of Friends. The Office is also another comfort show. I also realized how important my close friends are to me, and I recognized that they are the ones that make me feel human. That was also a major psychological struggle during this journey. Since you’re physical self is such a mess, you feel inhuman. Your body doesn’t feel like yours. For the past 2 years, my limbs have felt like these other disgusting creatures that I have to nurture. They’re not mine….they’re not mine…

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

No, fortunately this hasn’t affected my job status, except when I was in the hospital. I’m a nanny, and the family was very understanding and allowed me to care for their child however it suited my needs. Fortunately, my face was never severely affected, so I was able to hide my condition under long sleeves and gloves.

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

No…but I need to. I’ve done this completely alone. No caregivers. I’ve had friends to talk to and cry to…but I’ve been able to pretend that I’m fine. I talk about it as if it hasn’t affected me…but it has…and it’s been really fucking hard to face it.

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

It’s a gift. Fucking trust me. Your quality of life will transform. It will develop on its own time. Healing is not linear. It’s not it’s not its not. This, my love, will only make you stronger. YOU. ARE. A. WARRIOR.

Just be. Listen to your body. Don’t beat yourself up about anything. There’s no right way to heal. You have to trust your gut and take action on your own time. Everyone’s journey is drastically different, and we can’t compare. The only things that remain true amongst all of us are…and I mean all of us…the story, the symptoms, and the moment you realize you have RSS are all the same. And it’s one of the most empowering discoveries you’ll ever experience.

Oh and take pictures, especially at your worst. You won’t regret it. You’ll forget how much pain you were in, and the pictures are a reminder that you are a fucking warrior. Don’t ever underestimate that.

Last, but not least….

You are loved.

You are certainly loved, Stephanie! Thank you for a lovely interview!

Feature #15: Tanya Kong

Tanya 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

Maja 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 18^th 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.

Interview #6: Maartje Francisco

Maartje Francisco

Holland

“You will never get better until you stop trying to get better”

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

I started applying when I was 16, because the doctors said I had children-eczema that I would grow out of eventually. So we used it for my neck and nipples.

2. What was the name of the topical steroid?

Bethametasone (potent 3)

3. Were you ever prescribed more potent steroids?

When I was 24 I took a allergy-test with the derm and nothing came out so they gave me potent 4, dermovate. To apply on my hands/wrists.

4. How did you find out about RSS?

I’m a typical case of Topical steroid addiction, one day I googled this in Dutch first but I couldn’t find anything. I had a feeling I really needed the TS to make it normal again. For a while. But then it would come back within 5 days or so. I stumbled on the itsan website, saw the animated clip and it was such an eye-opener!

5. What made you feel you had RSS?

My hands and arms would gradually worsen and it burned, was bright red and spreaded like fire. With the dryness after every flare.

6. Were you diagnosed by a doctor? Did you have a supportive doctor?

No, I am a beautytherapist so this was a crazy but educational and inspiring ride for me! I found a great product for my company and skin and the manager in Holland of this product is Chinese and she knows a lot about TSW and the Chinese derms that dó treat this in different ways but without TS.

7. What were your first symptoms?

Itchiness, redness, and burning.

8. Is your family supportive? Friends?

YES! And it is oh so important, my mother is the strongest person I know and I couldn’t have done it without her. My husband, father, sister and kids have been by my side the whole ride. Some friends were interested and asked how it would go sometimes. But as we all know, if you don’t go through this you really don’t know what it is.

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

I made an appointment with a derm to get UVB Therapy. I got it at home! That was great for winter 2015.

Had a skin infection one time through TSW and I was on antibiotics for one week.

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

ITCHENESS! And the lack of sleep and almost no physical contact. But after all, the mental struggles on bad days are the hardest.

11. How long have you been in withdrawal?

Im 31 months in now, but I stopped counting after 2 years, because it became bearable after that, and I got to do everything I wanted to do again. But I think I’m not healed yet.

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

Dermaviduals, my skinbarrier creams.

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

I have my own business. I worked throughout the whole process but of course it affected everything. But for the better…at the end.

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

For a while, and it was more in a coach/mindfulness-way than a psychologist.

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

One day at a time, and time will heal!

Amazing interview! Thank you tons, Maartje!

Feature #12: Carol & Bara

Carol 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 Křepínská

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 !

FDA Reporting: Adverse Effects

Want to report adverse side effects? You don’t need to wait for your doctor. In fact, with Red Skin Syndrome, many adverse effects aren’t getting reported.

So let’s be proactive.

Visit the Food and Drug Administration page: FDA WEBSITE.

I apologize for this is only an American site, but others out of the country may be able to find your own government page to report adverse effects.

The papers you should fill out are the Consumer Voluntary Reporting Form

When you go to mail or fax the pages, you can also attach a picture of the product you are reporting. Do not physically send them your product, but keep it in case they want to contact you for more information.

The FDA will reply to you so you know that your paperwork was received.

You want to fill out Sections A, B, D and E. Don’t worry if you aren’t able to answer every single question. Just fill it out as best you can.

Also, the FDA have the ability to share your name and contact information with the company that produced your product. If you want your information private, make sure to check the box in Section E.

Any questions, you can call their toll free number, 1-800-332-1088

Once the forms are complete, mail them to:

MedWatch, Food & Drug Administration

5600 Fishers Lane

Rockville, MD 20857

If you’d rather fax, the toll free number is, 800- 332- 0178

Good luck, guys! Let your voices be heard!

Prescription Without A Cause

It’s not the steroid itself I have a problem with in the medical community. No. It is the overprescription & the lack of detective work to see if the patient even NEEDS the steroid that can cause so much harm when abused. That is what I have a problem with…

Take this dentist for instance. Here is the article that surfaced about his intense struggle with facial eczema.

Link to full article about Dr. Frances Tavares

This dentist, Dr. Frances Tavares, was not only misdiagnosed and mistreated, but then had to deal with Red Skin Syndrome because of his overprescription of topical steroids (on his face no less). We already know that the face is one of the most sensitive areas/high absorption spots on the body. To use topical steroids on the face is already a risk, but then for such a long period of time is extremely neglectful.

After countless different dermatologists giving him different brands of topical steroids, Dr. Tavares was finally allergy tested 2 YEARS after first being seen. That is an obscene amount of time for a dermatologist to wait when the patient is not responding well to the steroid. It even says on topical steroid inserts that doctors should reassess the situation if it doesn’t get better (… not 2 years later).

After he had the allergy test, he found out he had an allergy to propylene glycol, which is commonly found in lotions, toothpaste and other body care products. By getting rid of products with this ingredient, he was fine. Or was he?…

No, he wasn’t. He had to withdrawal from the topical steroids that he had been using for so long because dermatologists didn’t take the time to properly diagnosis him. If they found the root cause to begin with, there would not have been any need for steroids.

And the biggest problem I find about this article is the emphasis they put on tapering, as if to say tapering solves all your problems. There are many Red Skin Syndrome sufferers who have tapered down, just as their doctors have prescribed, and still flare badly. Could it help with adrenal fatigue? Sure, I can see that if they need it for their adrenals. But to say they will be fine once they taper is not accurate.

“The doctor who diagnosed Tavares’ allergy says there’s no problem with the prescription of corticosteroids, but it is a mistake for patients to come off them cold turkey.”

Yes, yes there is a problem. No, I am not a doctor, but YES there is a problem. These topical steroids should not be prescribed for long periods of time, especially not on the face. It is not only neglectful but shows a lack of education on the topic of steroids.

So, I beg of you. If you have a rash come up, anywhere, get it tested (allergy and or swabbed for infection) before you start slathering on topical steroids as a solution. They are not meant for a long term solution.

Topical Steroid Label Part II

Class 1 steroids, like Clobetasol Propionate, will always be the ones you see in studies showing bigger problems than less potent classes. However, that does not mean less point steroids are super safe.

So, I looked up the insert for the steroid I used, Alclometasone Dipropionate, which is a Class 6 steroid (Classes range from 1-7, 1 being the highest).

“May be used in patients 1 year of age and older, although safety efficacy of drug use for longer than 3 weeks have not been established.”

Not…. been… established. That translates into “we don’t know anymore after 3 weeks.” Also, it should NOT be used in children under 1 year old (although my personal belief is to steer clear of steroids on newborn skin).

The insert says to apply 2-3 times daily. We still see wavering views on this subject, some research showing putting on steroids creams more than once a day does not increase the likelihood of it working, but actually just increases your chances of overusing. Source

“If no improvement is seen within 2 weeks, reassessment of diagnosis may be necessary.” This doesn’t say “if this isn’t working we will just give you more potent steroids,” it states that there my need to be a reevaluation. Speak to your doctor about such matters because it is unbelievably important that you are diagnosed correctly. Perhaps you need a swab done to see if you have an infection? Or perhaps you are allergic to something inside the medication, or to a chemical or food you are use.

“In another study, Aclovate (alclometasone dipropionate) was applied to 80% of the body surface of a normal subjects twice daily for 21 days (3 weeks) with daily, 12 hour periods of whole body occlusion.” The HPA axis decreased 10% in these patients. This is a Class 6, mildly potent steroid, and within 3 weeks there was HPA axis suppression. First, 80% is almost full body, and some doctors will tell you to do that. Secondly, what is a normal subject? Someone with healthy skin? If so, someone with eczema will be even worse off since our skin barrier is damaged. Source

One of my favorite quotes is, “Topically applied Aclovate cream and ointment can be absorbed in sufficient amounts to produce systemic effects.” There is that word again: systemic. This Class 6, mildly potent steroid, can start affecting our adrenal glands. If a doctor says this isn’t true, hand them an insert.

This insert also says the same thing as Clobetasol Propionate regarding child toxicity and infection warnings. It also specified that it should not be used on diaper dermatitis.

“The following local adverse reactions have been reported…”

Who reports this? I never have. Where are these reports being made, or sent? Who sends them? Patients? Doctors? I know when I’ve stated adverse affects I’ve been told I was wrong by a doctor, so I know they weren’t reporting what I saw. I can only imagine that the list given is much smaller and/or incorrect due to lack of reporting.

But, check this out, you CAN do something: REPORT YOUR ADVERSE EFFECTS

Overall, there seems to be many unclear and unknown scientific facts about this steroid (most likely for all, but I can’t speak fairly on that since I have not read every single insert). Are we as patients supposed to be fine about this? When doctors tell us they are perfectly safe when we have concerns and see adverse affects, what evidence do they possess?

More research, management, and reporting must be done for the safety of patients.

Feature #7: Paloma & Juli-Anne

Paloma Rumsey

Age: 33

Career: Stay at home mom

When did you cease using topical steroids: November 5th 2015

What type did you use: Protopic (immnunosupressant) for about 10 years & triamcinolone acetonide for a few months

What is your favorite product for comfort? I used a lot of Acquaphor, original brand of Walmart brand or RiteAid brand. Also bepanthen nappy cream

What is the hardest thing to deal with during this condition? Not being able to care or interact with my children and husband

What is the first thing you will do when healed? Take my babies for swimming classes and I will workout until I drip sweat

Juli-Anne Coward

Age: 49

Career: Artist and commended picture framer

When did you cease using topical steroids: 19th September 2016

What type did you use: Injected cortisone 6 months ( age 9), varyious topicals ranging from otc to most potent dermavate, betnovate, eumovate, hydrocortisone. Inhahled becotide, several courses of oral prednisone.

What is your favorite product for comfort? Dead Sea salt in the bath and sudo cream on the skin.

What is the hardest thing to deal with during this condition? There are many hard parts, not knowing how long, the intensity of pain, mentally crippling, all consuming. Not being understood by doctors .

What is the first thing you will do when healed? It is hard to say at the moment there will be lots of things I will look forward to I am sure one will be renovating our Spanish house, but trying to help others and raise awareness of this disease