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.

 

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!

Interview #6: Maartje Francisco

maartje2016Maartje 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-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 !

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.

Interview #5: Caroline Langdon

caroline-langdonCaroline Langdon

Adelaide, South Australia

“You are the sky. Everything else – it’s just the weather.” ― Pema Chödrön

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

I was treated with steroid cream from infancy for atopic eczema.

 

2. What was the name of the topical steroid?

My mum thinks the first steroid cream was called Celestone.

3. Were you ever prescribed more potent steroids? 

Yes. All kinds. All strengths. For eczema.

As a young child I had severe eczema and was prescribed mild to strong steroid creams and ointments for different parts of my body. I think from around the age of twelve, I started using it on my face as I’d developed eczema there as well. Mostly around my eyes and mouth at that point. By the time I was a young adult I used steroid creams and ointments on and off, of varying potencies.  On my face and different parts of my body. By this time I knew steroids were not a great option long term and endeavoured to use them sparingly.

I tried all manner of things for managing my eczema naturally (without steroids), via nutrition, supplements, lifestyle, natural creams/potions etc…. but my skin would eventually become completely unmanageable after a few mths if not before. I would need to use steroids again to control my eczema, so that I was able to sleep, work, care for my children and function properly. They suppressed it, it worked temporarily/superficially, that is, until it didn’t. Such a vicious cycle.

4. How did you find out about RSS?

I typed into my computer something like: red, burning, severely itchy skin… and eventually stumbled onto ITSAN.

5. What made you feel you had RSS?

I was desperate to find out what was happening with my skin, it was not like the eczema of my past (though that was no walk in the park, this was much worse). It was often red, itching and burning. It didn’t matter how great my diet was or what else I tried, it kept getting worse and spreading to areas I’d never had eczema before. My asthma and hayfever were super bad on top of it. I’d always been an allergy prone person but I seemed to be allergic to everything! I was getting nowhere with the dermatologist I’d been seeing, except sicker and sicker. My skin was so unmanageable, it was affecting every facet of my life! He had me back on steroids telling me I had eczema urticaria and said, ‘Many people have to manage it with steroids the best they can the rest of their life, you’re not the only one!’ (I think this was meant to be comforting??). He put me on an immunosuppressant drug used for cancer and transplant recipients, which is what they give people with very bad skin conditions too I discovered but I agreed as was desperate.

My immune system was at such a low ebb, I felt so sick and run down and I had skin that was red, burning and incessantly itchy most of the day/night.

I indeed wanted relief but I didn’t want to be taking these drugs for the rest of my life, especially when I seemed to be getting progressively worse, not better!!

There had to be a better answer.

I was in such despair. I started googling my symptoms, things like ‘burning, red skin/ hives/ rash spreading to new areas/ relentless itching/ palpitations/ severe anxiety/ no sleep etc’ and found other people who described EXACTLY what I was experiencing and going through, the common thread having been the use of topical steroids.

Then I stumbled across ITSAN which was such a relief.

I had finally found a site and support group (so many people going through exactly the same thing as me!) that talked about Red Skin Syndrome.   The site linked many studies and medical publications about how Topical steroids can cause this condition in the body …..and people were finding a way to overcome it!!

Stop using them!! Ha, sounds easy right? Not so. If it were easy to stop them, I guess there wouldn’t be so many using them. Hardest thing I’ve ever done!! Also the best thing I’ve ever done!!

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

No I wasn’t but my gp had seen me get progressively worse over time. When I told her that I believed it to be the steroids promoting the condition and shared info from ITSAN and others experiences with her, she found it to be very plausible, though she had never seen anybody else that was in the state I was in personally. She’s an Integrative Medicine GP so she was very supportive in monitoring me, etc. I don’t know what I would have done without her in those first 12 months, for moral support alone!

I had a great naturopath as well. Very lucky in this respect.

7. What were your first symptoms?

Spreading rashes, hives, red skin, burning sensation, crazy itchiness, sore eyes, poor sleep, heart palpitations, anxiety, depression.

8. Is your family supportive? Friends?

Yes, I’m so grateful to those who were/are.

I fell out of touch with many people though (or they with me). Mostly because I could no longer go out and socialise for quite a long time. It’s a very isolating experience in that sense.

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

In the early weeks of tsw, I was in a very severe state and had come up on the waiting list with the Dermatology Dept at the hospital.

After my previous experience with the dermatologist I wasn’t sure about going but was in such a bad way, thought I should keep the appointment because at that particular point, I felt like I was close to dying, no kidding! I had no idea how, or if the body could cope with this for much longer. Complete head to toe, burning, red, oozing and tremendous oedema. My face and entire body was filled with fluid and leaking it out everywhere at the same time. Nobody who knew me would have recognized me, I barely recognized myself. I walked in, in a knee length cotton night singlet, which was agony in itself. At home I couldn’t wear anything it was so painful. I looked like a maniac, itching insanely everywhere. The nurse at the counter got a cold, wet sheet and threw it over me, it was heaven for counteracting the heat in my body. By the time I was called in to see the dermatologist, I was shivering like crazy. I tried to explain that I had been reacting badly to steroid treatment and had ceased using any creams in the last few weeks.
They deemed me ‘critical’ and that I should be admitted immediately! I asked how they would treat me if this happened and they said with steroid wet wraps and oral cortisone.   I said that steroids were responsible for what had gotten me into this mess and so that was not an option really.

They basically said, ‘Oh well, if that’s not what you want we can’t help you today… but how do you think you will manage this by yourself at home’. I was gobsmacked, I thought they may have been able to provide some help or checking of vitals etc to make sure they weren’t sending me on my way if they were deeming me ‘critical’!

I said, ‘I don’t know, I guess I’ll go to my gp and get her to monitor me, make sure there is no infection, or something..’, to which they responded, ‘oh, your gp won’t be able to do anything for this’.

If you don’t want to be steroid tempted, hospital is not the place to go. I walked out and went home. It was truly the hardest yet best thing I could have ever done for myself.

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

The debilitating and painful nature of it, the fact that it unpredictably effects not only the skin but many aspects of the body’s internal and systemic functions. The continuous lack of sleep. The fact that it takes an undetermined length of time to recover from. Hmm, I guess there have been a few hard parts.

11. How long have you been in withdrawal? 

I’ve been in withdrawal since February 2014, so 33mths so far.

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

Tsw support groups have brought much comfort along the way.

Baths with Epsom and ACV (apple cider vinegar), icepacks, pressure bandaging, soft cotton clothes and bedding.

Sudocrem and Robertson’s skin repair ointment.

Meditation and drawing.

Good food.

Reading .

Many things but these are the staples.

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

I have been unemployed throughout tsw. Was unable to work and fortunate to be able to take time to repair my body. Have been doing some volunteer work but am only just recently beginning to seek work again. It’s been a financial drain of the highest order.

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

Yes, I went to see a psychologist over the first 2 yrs. I found it to be really helpful in keeping me sane. Fortunately for me, he was very interested in nutrition and health, had a good comprehension of the impact prescriptive drugs can have on effecting body chemistry, health and well-being. It was an incredible support at a time when I really needed it, he provided good counselling space for me. He also used hypnotherapy in some sessions to help with pain and itch management. It made a dent.

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

The intensity subsides.

Time and perseverance definitely has its’ rewards, IT DOES GET BETTER!

Trust that your body has incredible ability to right itself.

Tsw is a lesson in loving patience, with oneself.

That was more like four!


Caroline, thank you! Such an in-depth interview!

Feature #10: Ana & Tom

anna-and-tom-brus

Ana Brus

Age: 30

Career: Visual Merchandiser

When did you cease using topical steroids: July 2015

What type did you use: Elocom

What is your favorite product for comfort? First 6 months bath with soda bicarbonate and salt, MW from second month. I also take chlorella, spirulina, D vitamin, magnesium, probiotics, marihuana, and zinc

What is the hardest thing to deal with during this condition? When it was the hardest I couldn`t hug my husband and children, because of the pain. I was sleeping alone in the living room for 5 months because I couldn`t bare the touch.

What is the first thing you will do when healed? I got tattoos for my first aniversary and I want more when I totally heal. I want to polish my nails when my hands are healed. And most important…I just want to spend time with my family.


Tom Brus

Age: 7 1/2

Career: 2nd grade

When did you cease using topical steroids: July 2015

What type did you use: Elocom

What is your favorite product for comfort? Chlorella, spirulina, D vitamin, magnesium, probiotics, and zinc

What is the hardest thing to deal with during this condition? Because of diet I couldn`t eat some things I like. The hardest part for me is to keep myself from scratching to hard. I couldn`t swim when we was on seaside.

What is the first thing you will do when healed? I will do my sports and play with my friends like a normal boy.

Generic Brands: Are they really Equivalent?

When we are prescribed steroids, we sometimes choose to use the generic brand because it is cheaper. Why spend tons of money on the brand name if you can get the same cream for a lower price?

Well, we may need to rethink our bargain.

A study done in 1991 showed that not all off-brand topical steroid products hold up to their supposed counterpart.

From the abstract: “Six generic formulations of 5 topical steroids were compared for bioequivalence with their trade name counterparts using an in vivo vasoconstriction assay. Two of the six generic forms were found to show significantly less vasoconstriction then the respective trade-name topical steroids.”

Without even meaning to, you could be using a topical steroid that is less potent than the prescribed objective. I have not been able to find evidence that this has been rectified since the 1990’s. This is extremely troubling, something that needs attention if it is still an ongoing occurrence.

What is more discouraging is the fact that this relates to ALL generic drugs, not just to topical steroids.

In 2011, a Supreme court decision was made: If there is a side effect seen in a brand name drug, the company must place it on the label. However, the generic company is not under such law and does not have to share those findings on the label.

As explained by Dr. Roger Steinert in his article, Generic vs Brand-Name Drugs: An Ongoing Debate, he describes the fatal flaw of how generic drugs work. The FDA says that the generic brand must 1) use the same concentration of active ingredient as the brand name and 2) same route of administration as the brand name. However, they are not reviewed and are not as monitored as their brand name “counterpart”. This leaves an immense room for error.

So, next time you pick up that generic brand, remember what you are paying for. What a backwards world we live in…

 

Study From: A Double-Blind controlled comparison of generic and trade-name topical steroids using the vasoconstriction assay. Arch Dermatol. 1991;127(2):197-201. Olsen EA.

Feature #9: Will & Ashlee

will-hannahWill Hannah

Age: 5 1/2

Career: Pre School

When did you cease using topical steroids: October 13, 2015

 

What type did you use: Advantan and Eleuphrat  (high potency)

What is your favorite product for comfort? First two months “Simply Natural Oils” chickweed ointment. Month 3-4 Natural Shae butter. Month four moisture withdrawal. Epsom salt baths and wet wraps soaked in coconut oil for first four months.

What is the hardest thing to deal with during this condition? Will says sensitivity to the elements– wind, sun, rain etc. His mother says he hated zingers and the ‘fire ants’ feeling

What is the first thing you will do when healed? We went camping and swimming in the beach last weekend despite mild anniversary flare. IT WAS AMAZING!!! Living the dream already!!!


Ashlee Coxashlee-cox

Age: 26

Career: I’m currently unemployed due to TSW. I was a track rider/stablehand in a horse racing stable.

When did you cease using topical steroids: July 2016

What type did you use: I used various different types of TS, primarily Betamethesone, Diprosone and Prednisolone.

What is your favorite product for comfort? I find Dermeze Ointment has provided me some relief during TSW. Also cool baths.

What is the hardest thing to deal with during this condition? There are so many negative sides to TSW, it’s difficult to pick just one. For me it would be the utter destruction of my career and sense of living. Not being able to leave the house due to such severe skin for so long leaves its mark.

What is the first thing you will do when healed? The first thing I want to do when my skin is better is take up horse riding again! It’s painful not being able to spend any time doing the things I love.

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.

Interview #4: Robin Winkler

screen-shot-2016-11-09-at-12-36-22-pmRobin Winkler

Sugar Hill, GA

“…and never could I have known the taste of heaven, had I not swallowed the pieces of hell, first.”

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

I was first prescribed topical steroids when I was 17 months old- I had an allergic reaction to detergent in some clothes my mom was trying on me.

2. What was the name of the topical steroid?

I started out using triamcinolone- the pharmacy would mix it into Aveeno or Eucerin for me. I remember that my parents would put it all over my arms and legs every night.

3. Were you ever prescribed more potent steroids? 

As I mentioned, I had a nightly routine with my triamcinolone. It never stopped once it started, and became a norm for me. When I was about 10, however, my face started showing signs of ‘eczema’ so I was prescribed a different steroid called desonide for my face. Over the years, my eczema slowly consumed my entire body, and I would keep it at bay with triamcinolone, desonide, fluocinonide, mometasone furoate- you name it, I have probably been prescribed it. I also tried alternatives to topical steroids, such as Protopic or Elidel.

4. How did you find out about RSS?

I found out about RSS in May of 2015. I had a one year old, was working full time, was stressed, and I had used oral steroids for my skin. I actually got the shingles and then of course, more steroids. After the shingle was gone, I had a particularly bad flare, and none of the steroid creams were helping- not even the really, really, strong ones. So I googled “the steroids don’t help my eczema anymore” and it led me to ITSAN.

5. What made you feel you had RSS?

I observed the TSW/ITSAN Facebook groups and researched for a long time before I was determined this was indeed my same affliction. What I couldn’t ignore was the obvious rebound effect after stopping steroid use- and it was classic, and my skin matched every picture on the ITSAN site. The Red Sleeves are not something I have ever had with my original eczema. On top of all of these things was the fact that my original eczema had never affected these areas of my body before

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

I was diagnosed by a dermatologist with ‘steroid dependent eczema’ – which at least meant she recognized that I needed to stop using them. She was key in helping me come off of the steroids, but the only way to do so was to use an immunosuppressant- basically, a drug that people take when they have organ transplants to keep their bodies from rejecting the new organ. I eventually sought, and am still working with, a naturopathic doctor. He has been immensely supportive, calls my condition TSA (topical steroid addiction), has helped me find the root cause of my original eczema, and has even helped me do research about topical steroid addiction.

7. What were your first symptoms?

I had been on oral prednisone for the shingles and topical steroids for my eczema; as soon as I ceased using them, my skin peeled and cracked and was just so tight and dry. That was immediate too- within 24-48 hours of stopping. One week into stopping, and my skin was not only tight and dry and flakey but simultaneously oozy and waxy and hot – my face swelled, my entire face, neck, chest, arms, legs- all turned bright red and there was an unbearable nerve pain. Like a million razor cuts in every square inch of your skin, or a million fire ants biting all at once. It was basically a cycle of hot, red, oozy skin to the crusty, scabby, painful skin, then to flaky skin that fell off everywhere…and then back to square one with the intense inflammation.

8. Is your family supportive? Friends?

My mom and my brother have been amazing. I am a single mom, so when this started and I realized I wouldn’t be able to work, I moved in with my mother. She has paid for medical expenses, taken on the duty of caring for me when I couldn’t even take a shower. She has helped me with my son, and helped me financially as well. I know it has been a huge strain on every aspect of her life. Friends who have little knowledge of eczema or RSS in general are supportive, but wary. They don’t understand why I don’t use steroids or why I needed so much help from my mom, and can be quick to judge or criticize. I worry people will see me as entitled or lazy, since they have no idea what’s really going on.

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

I went to the ER on 1/29/2016. My scalp was green and yellow and bloody, my skin was peeling and cracked and bleeding from my scalp to my toes. I couldn’t eat. I couldn’t sleep. I couldn’t shower. I couldn’t even think straight because the pain was unbearable. My brother says I’m a tough cookie, so he knew that this was serious when he saw me crying from pain. It takes a lot of pain to make me cry.

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

This is a tough question. Ask me the easiest part. HA. From one aspect, just not being able to LIVE in any measure of the word has probably been the most difficult part to adjust to. I was working full time, I took my son to daycare and picked him up-everything, on my own. Once RSS took over, I couldn’t even do the dishes. The other part that was/is infuriating is the lack of knowledge and research about RSS. I joke that everyone going through this is like a lab rat, because we have to find out what works for us since there are no medical guidelines, much less real recognition from the medical community. The stress is also a lot- there were days I wanted to crawl into a box and literally die. There was financial stress- I couldn’t contribute to my own life or my sons life, and living costs money. I tried to get on disability several times (temporarily) but was never able to. There was emotional stress- I vividly remember lying in bed, in a lot of pain, and thinking, why should I be still and do nothing if its STILL going to hurt?? Again, naming the hardest part of this isn’t easy.

11. How long have you been in withdrawal? 

I started my withdrawal 8/12/2015. I would say I am about 14 months in, but I have used oral steroids during this time though, for asthma, and an anaphylactic reaction I had. I would not say that I am completely healed, but I am now about 85-90% better.

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

In the early stages, apple cider vinegar baths and zinc oxide paste (like desitin for babies) were life savers. As time went on, I was able to tolerate sea salt baths, and oatmeal baths. I really liked hydrocolloid bandages for very raw and deep wounds, as well as elaj (a highly concentrated oatmeal cream). As far as mental measures, I actually sought a health coach who helped me with stress management and meditation.

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

I was. I stopped working as a medical assistant purposefully so I could start my withdrawal. As I mentioned, though, I am a single parent so I tried to hold down a couple different odd jobs in the beginning, and I couldn’t. I’m hoping to return to work soon…

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

As I mentioned, I did enlist a health coach for 10 weeks. Now that period is over, however, and I find myself wishing I could utilize her again. So, yes, I think therapy would be helpful. To be honest, I’m still scared that I will wake up one day, full flare, back at square one with no eyebrows and hot painful skin everywhere. It kind of keeps me from diving fully back into my life just yet.

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

It’s hard to narrow my advice down to one pointed piece. I would say, take pictures. Even if you don’t share them on social media; keep them for yourself. I wish I had taken more. Also, I think a lot of this journey is hard because we feel like we have lost ourselves and any sense of a ‘life by OUR design’- but please, remember, you are still there and you are still YOU. The most important thing during this journey is to truly invest in yourself, even if you cant take time off work- don’t’ obsess over what other people will think. Take it one day at a time, one minute at a time, or one second at a time. Get through it however you have to- remember no one’s journey is the same and the only real goal is to restore health to our bodies without steroids.


Thank you so much, Robin! You’re interview was inspiring!