Feature #32: Kirk

KIRKKirk Robertson

Age: 19

Career: Self employed Personal Trainer (currently on hiatus)

When did you cease using topical steroids: 29th of December 2016

What type did you use: Eumovate

What is your favorite product for comfort? Dead sea salts

What is the hardest thing to deal with during this condition? Not being able to build my business or build on my plan of becoming a professional natural bodybuilder

What is the first thing you will do when healed? Train with my girlfriend and go out for a meal with my family.  Followed by an overdue night out!

Interview #9: Mattiel Brown

mattielMattiel 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!

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.

Interview #8: Stephanie Miller

stephamie-millerStephanie 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 #14: Angelena & Naomi

angela-luck
Angelena Hope Luckeroth

Age: 28

Career: I was a server & and a guard at an art museum before I was forced by TSW to quit.  Went back to work at 5 months TSW in an entirely different capacity as a Personal Care Assistant & ceramic tilemaker.  Way less public positions.  I had to hid from the world for 5 months.  I felt subhuman, like a sewer mutant. With that said, embarking on TSW was the best thing I have ever done for myself and my health

When did you cease using topical steroids: Nov 11th 2015

What type did you use: Hydrocortisone 2.5 on face & neck. Triamincinolone full body, even on breasts

What is your favorite product for comfort? DSS (Dead Sea Salt) baths with a couple drops of Tea tree got me through the worst of it.  Spent SO MANY HOURS in the bathtub, sought refuge in the bathtub everyday.  I’m a MW (moisture-withdrawal) person so I never messed with creams & lotions much after embarking on TSW.

What is the hardest thing to deal with during this condition? TSW is crippling, it robs us of our precious time here on earth and alienates us from society.  I am a changed person forevermore.  I am humbled.  I feel like I have always had a great capacity for empathy and caring but this experience has brought me to a whole new level.

What is the first thing you will do when healed? I am going back to school to get my teaching license for Art k-12.  My skin condition (TSA) has ruled my life for far too long and I feel like once my withdrawal is complete I can move on with my life for the first time in YEARS.


Naomi Sarah Davies naomi

Age: 29

Career: Hospice Nursing Assistant

When did you cease using topical steroids: April 12th 2014

What type did you use: Dermovate, Betnovate, Elecon

What is your favorite product for comfort? Sudocrem (a UK zinc based cream) and tubigrip bandages

What is the hardest thing to deal with during this condition? The unrelenting severe pain and depression, not being able to mentally cope.

What is the first thing you will do when healed? I went on holiday and swam and got a tan!

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.

 

Feature #13: Ariana & Hayley

ari-mundAriana Yunda

Age: 30

Career: unemployed due to TSW

When did you cease using topical steroids: August 23 2016 (third try)

What type did you use: I can’t remember every kind. I’ve been using for 29 years: hydrocortisone, prednisone, clobetasol, betamethasone, Elidel, Mometasone Furoate and tons of injected immunosuppresants like Bethaduo and Ciclosporine.

What is your favorite product for comfort? It changes, but lavender essential oil has helped as sleeping aid (I put it in my feet every night),  zinc oxide when oozing and lately a spray called MR. Wheatgrass that I put on my skin when I get out of the shower and reapply every time I feel dry. Any other moisturizer, whether it’s a cream or oil, burns.

What is the hardest thing to deal with during this condition? Having the symptoms of the shivers, the oozing, the no sleep, the crazy diets stopping my life.

What is the first thing you are going to do when you are healed? Jump in the ocean, work out and dance without worrying about my sweat burning. Start working again! I became a therapist in the process 🙂 I want to help others.


Hayley hayley-szabo

Age: 24

Career: Unemployed for two years due to TSW

When did you cease using topical steroids: 17 December 2014

What type did you use: Diprosone and advantan (very potent)

What is your favorite product for comfort? Zinc balm and ice packs!

What is the hardest thing to deal with during this condition? The severity of my facial symptoms, the lack of independence,  having to put my life on hold and the bloody heinous OOZE…

What is the first thing you are going to do when you are healed? I’m going to do everything I had to put on hold! I want to start working again, I want to go back to uni and get my masters, and I want to travel to Europe with my boyfriend!