Feature #31: Magda & Elspeth

Magda RoszMagda Lima

Age: 23

Career: Property Manager

When did you cease using topical steroids: April 2016

What type did you use: I’ve only used steroids topically: Hydrocortisone- eyelids, neck , Betamethasone valerate and many more but I can’t remember them all. Immunosuppressants : elidel, protopic

What is your favorite product for comfort? Dead sea salt + Himalayan salt baths, castor oil, calamine lotion- when oozing, tubular bandages

What is the hardest thing to deal with during this condition? The hardest part for me was first 9 months when I was red from head to toe, horrendously itchy and I could not sleep! I am now 12 months in and still having good and bad days, the worst areas now are face, neck and hands.

What is the first thing you will do when healed? Put make up on! Enjoy my life again!


Elspeth JellisonElspeth

Age: 35

Career: Speech Language Pathology Grad Student (Finally graduating May 2017 – Woo-hoo!)

When did you cease using topical steroids: July 7, 2016

What type did you use: OTC hydrocortisone, Dermasmoothe, Clobetasol .05%. Also used Elidel and had 3 or 4 short bursts of oral steroids. This was all during a year and a half period.

What is your favorite product for comfort? Safe Soda (Pharmaceutical grade sodium bicarbonate). I started using this around 8 months TSW and it really changed my life. Funny Youtube videos also saved my sanity during my toughest periods of TSW.

What was the hardest thing to deal with during this condition? The hardest part of TSW was the feeling that I wasn’t even me anymore. I was in so much pain and so sad all the time that living felt like a chore. I also hated how I felt I couldn’t be there for my husband and son the way I wanted to be.

What is the first thing you will do when healed? My skin has already improved enough to accomplish my first goal which is to enjoy a vacation with my family. This weekend I’m going to go get a dog, which I’ve wanted to do for ages but haven’t felt well enough to for a long time. I still have some left to go on my healing but I’m grateful to be able to enjoy life again.

 

Interview #14: Danae Kirtley

DanaeDanae Kirtley

Eureka, California

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

I started using topical steroids by recommendation from my family practitioner in an effort to treat my childhood eczema, starting at about age 10.

2.  What was the name of the topical steroid?

To begin with, my parents and I were advised to use over the counter Hydrocortisone cream (.5-1%) liberally, to any and all rashy areas of skin. Was also advised to apply like lotion after every bath or shower as a “prevention method” even if my skin was not affected by eczema.

3. Were you ever prescribed more potent steroids? 

Yes. After a few years of using Hydrocortisone cream and my problem areas had spread and become more vigilant; I was given a trial tube measuring a few ounces of Elidel. After that didn’t work and burned my skin, I was prescribed Triamcinalone ointment, which I rarely used because I hated the texture, greasines, and how much it burned my skin.

4. How did you find out about RSS?

I found out about RSS after researching online desperately for the cause of my worsening symptoms. After using Hydrocortisone cream twice daily to my face, and 3-4 times a week on my entire body like lotion for 10 years- My body had seemingly given up. I couldn’t suffer anymore, and I needed answers. I found ITSAN and there began my diligent research.

5. What made you feel you had RSS?

What had made me feel like I had RSS was that once the information was before me- I just knew. I had never thought that anyone else had suffered the same symptoms and had suffered so uniquely as I had. I read the many testimonials, medical documents, blogs, vlogs and more from people all over the world with the same story I have.

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

I was not diagnosed by a doctor, however- my General Practitioner was very supportive. She was just as baffled as I was at my chronic, increasingly debilitating symptoms. She agreed that the amount of exposure and absorption of steroids I had was alarming. We came up with a plan to taper down my usage and to meet more regularly so that she could monitor my symptoms and keep track of my progress. All the while, she had ordered many different blood tests to rule out any other autoimmune diseases, disorders, deficits in nutrition and more. Nothing of relevance to explain my symptoms came up with as many tests as we did.

7. What were your first symptoms?

My first symptoms of Eczema began as early as preschool years, between ages of 5-6 years old. My inner elbows and back of my knees were always dry, sensitive and itchy. After the first year of using Topical Steroids, my rashes had spread all over my arms, legs, and had begun manifesting on my face, neck and chest. My body would erupt into bright red, inflamed skin, that would burn like I had never experienced before and itch deep within my subdermis within one day of not using Topical Steroids. It had become a begrudging truth that my body NEEDED the application of Steroids daily, and for years, to maintain any semblance of normality. All the while, my health declining. What initially caused me to research the symptoms of long-term use of Steroids, was my rapid decrease in weight, my eyesight, worsening skin condition, and hairloss.

8. Is your family supportive? Friends?

For the most part- Yes. Once I had done about 3 months of personal research, and had already been to a multitude of appointments with my GP, and Ophthalmologist, I created a plan to introduce my and my doctor’s findings with closest family and friends. I asked for their support and provided opportunity to allow them to ask their own questions, express their concern and understanding. Several of them completely agreed that withdrawing from Topical Steroids would be in my best interest long-term. Many of them came to my aide in the best ways they could, be it care-packages of sterile gauze, feeding and helping me with personal care, or stopping by to spend time with me while I lay in bed for those many many months of disability.

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

I had been to the hospital for blood-tests, I had considered going to the ER multiple times when my symptoms were so severe that I was in and out of consciousness because of the extreme amount of pain I was in. Thankfully I was under the care of family and my Fiancee, who all did their best to comfort me and do everything they could to surround me with love and support. The possibility of being administered Steroids in addition to any much needed pain management medication had I gone to the ER- was too much of a gamble against my progress.

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

Besides the incomprehensible amount of pain that I endured(and endure still from time to time), is the decline of my mental health. Being suddenly thrust into Disability and not having a definite time-frame for healing and success is taxing to say the least. I was often alone, with my own thoughts, while being unable to move and bedridden. I became unable to look at my own reflection as the person I had always been and seen looking back at me was gone. I didn’t recognize myself, and being unable to function in a physical capacity only fed into a Dissociation type state even further. I was in a very deep Depression along with weeks of insomnia. To this day, my anxiety and difficulty relating to others in social activities still is of great difficulty for me. I continue to challenge myself in positive ways. However it feels as though I am forever changed, mentally, because of this illness.

11. How long have you been in withdrawal? 

I started tapering my usage of Steroids under my General Practitioner’s guidance in the very beginning of November 2014. I started my full withdrawal after my birthday in December 2015. On the day that I am writing this, it has been 817 days since my last application or administration of Steroids. I am not yet ‘healed’, however, I have made a tremendous amount of progress. I went from being completely unable to perform the smallest tasks for myself, like sitting up in bed. Brushing my teeth, or walking at times… to now being able to walk, work part-time, I do daily house chores, and even present as a normal person from day to day. I have bad days, but they don’t knock me down nearly as bad as they used to.

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

I listen to lots of music, I play music myself, I have been catching up on all the shows, and movies I have missed throughout the years. I drink tea and have many contemplative moments, writing, and lots of snuggles. Sometimes I am inconsolable, but the truth in those moments are that they are always temporary- as my best friend and beloved fiancee has said since day one of TSW, “Maybe Tomorrow…” Which to us, means: Tomorrow may be a better day, it may provide better or different opportunities to be fulfilled, or more able. It is a phrase that instills Hope, even when things feel or seem very dark, it will always get better.

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

I have now been employed after a 2 year absence in the workforce, for 5 months! This means a lot to me as I have always worked hard and enjoyed being employed. Being affected by TSW still provides interesting challenges at work for me. Thankfully my Manager and coworkers are all very understanding and are more than willing to make exceptions or take on tasks in order to keep me comfortable. I am very thankful and humbled by my ability to work with such supportive people. Sometimes I have to sit, while I am on shift, as I get very dizzy and disoriented after standing for hours. Sometimes I have to take an additional break to relax, or coworkers have had to come in as a replacement for my missed shift because of a ‘Flare-up’ that inhibits my ability to perform my duties. I am pleased to share that my strength and physical duress has improved over the past 5 months and I only hope to continue getting better.

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

Yes, I would very much like to go to Therapy because of TSW. I have all of the classic markers of PTSD from this condition, and because of the extreme amount of mental stress I endured. I have had a resurgence of mental symptoms and new ones (that I do not wish to share), that do get in the way of my daily activities because of TSW. The amount of trauma and pain that we all go through with this condition is absolutely extraordinary and severe.

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

IT GETS BETTER. It may feel like this pain will last forever, but it does not. I remember that hopeless feeling very very well- but we do get better and I am proof of that.


Thank you for such a terrific interview, Danae!!!!!

Feature #29: Michelle & Laura

Miche;le Li.PNGMichelle Li 

Age: 25

Career: Data Scientist

When did you cease using topical steroids: July 2015

What type did you use: Elocon in childhood, other hydrocortisone creams of various strengths for eczema around eyelids and lips, and immunosuppressants (elidel, protopic) in my teens.

What is your favorite product for comfort? A balm I make using shea butter, jojoba oil, cocoa butter, peppermint essential oil and eucalyptus essential oil.  The essential oils are very cooling and help relieve the itch…sometimes.

What is the hardest thing to deal with during this condition? The hardest part about TSW is the roller coaster of flare-ups. Sometimes you think you’ve beat it, but another flare-up will come, in a different part of your body. It’s really hard to keep a positive attitude when that happens.

What is the first thing you will do when healed? I’m doing everything I want to be doing! I’ve made a big effort to keep chugging along, advancing in my career, traveling, and doing as much as I can without causing my body stress despite my flare-ups… But maybe, going camping and not having to worry about infections or having a good nights rest would be the first thing I do once I’m healed.


Laura MathiesonLaura Math.png

Age: 29

Career: Unemployed due to TSW and anxiety

When did you cease using topical steroids: 28th May 2014

What type did you use: I only ever used steroids topically, these include Hydrocortisone, Betnovate, Fucidin H, Fucibet and Elocon. There are many more but I can’t remember them all. Other treatments I have tried include Traditional Chinese Medicine, hypnotherapy, UVB light treatment, homeopathy. I was still using steroids when trying these other therapies in the past.

What is your favorite product for comfort? At the start of withdrawal i used tubs and tubs of 50/50 ointment. Later I found Dead Sea Salt baths very soothing. I’d use zinc infused bandages when oozing. Later into TWS (about the 2 year mark) I started using Elaj, and I still use it to this day.

What is the hardest thing to deal with during this condition? The hardest part for me is the anxiety and depression; not wanting to be seen by anyone and shutting myself away from the world.

What is the first thing you will do when healed? The first thing I want to do when I’m healed from TSW is hold down a full time job long enough to save enough money to go travelling for a few months.

Feature #28: Kayla & Kleidy

Kayla.pngKayla Clarke 

Age: 26

Career: 3rd year resident of Naturopathic Medicine

When did you cease using topical steroids: Dec 19 2016

What type did you use: Betamethasone valerate 0.1% on and off for 18ish years

What is your favorite product for comfort? A big fuzzy blanket, a hot cup of tea, and cannabis salve

What is the hardest thing to deal with during this condition? Acceptance. For a long time I couldn’t accept what was happening to me. I thought (being in Naturopathic medicine), I would be able to find a quick fix. Not the case. I can support my body where it needs help, but in the end, I have to let it do its thing.

What is the first thing you will do when healed? Hike up a mountain and get all kinds of sweaty.


Kleidy Sevillakleidy sevilla

Age: 10

Career: Grade 4 student

When did you cease using topical steroids: June 2016

What type did you use: Prednisone, elidel, hydrocortisone in different strengths

What is your favorite product for comfort? Only product I can handle is vaseline, love icecream to keep me cold because I’m hot all the time. Also love to hear music to calm me down.

What is the hardest thing to deal with during this condition? Not being able to have a good night sleep. I’m always tired.

What is the first thing you will do when healed? I am going to wear a bathing suit and go to the swimming pool.

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.

 

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

screen-shot-2016-09-25-at-6-38-38-pm

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.

screen-shot-2016-09-25-at-6-41-20-pm

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.

Not Just A Dermatology Subject

Dermatologists are not the only ones allowed to prescribe topical steroids. Other persons whom prescribe these drugs are general practitioners, our family doctor. However, they are not specialized in this area. We already know some dermatologists push past the guidelines, but GPs are even less educated on steroids and all of their adverse effects if overprescribed or prescribed incorrectly.

In the FDA Evaluation and Research paper, they point out how our GPs can be truly hurting us. “… family physicians frequently prescribed betamethasone dipropionate and clotrimazole to children younger than 5 years of age and for use on genital skin disorders.”

Not only should this super potent steroid be prescribed with utmost caution to adults, but then add an anti-fungal (clotrimazole) into the mix, and you’ve got mega trouble. NEVER mix antifungals with topical steroids, and never use a steroid on a fungal infection. It is also stated in topical steroid inserts to never use these topical steroids on the genitals since it is extremely sensitive and most likely under occlusion (diaper).

This paper also talks heavily about research they constructed from 202 cases. The median age was 7 years old, a mix of both genders, and drum roll…. A median of topical steroid use for 169.3 days. That comes out to a little over 5.5 months of consecutive use. The shortest time was 1 day, and the longest was 7 years. This is why people have steroid phobia from this type of disregard for topical steroid guidelines.

If doctors wish to have the trust of their patient, then patients need to see that doctors can be trusted. We are the ones who have to endure the consequences. We are the ones who will have to suffer. There has to be open and honest communication on a level playing field. So many lives can be saved from needless pain if topical steroids were not only used strictly by a guideline (NOT by someone’s discretion), but also to know that the guideline set is correct and appropriate.

 

 

Feature #7: Paloma & Juli-Anne

paloma-macarioPaloma 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 Cowardjuli-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

Interview #3: Kelly Fasciana

kelly-fasciana-jpgKelly Fasciana

Pennsylvania, US

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

Roughly ten years old. I’ve had severe eczema since birth; however my mom tried to hold on being as natural as possible throughout my early childhood.

2. What was the name of the topical steroid?

I’m 24 now, and I have about 13 years of usage under my belt (quit when I was 23). I started off with the usual hydrocortisone ointment and triamcinalone for most of my later childhood. I’d say these two were actually used properly and sparingly as I had bouts of time with nice normal skin and usually only flared in the winter. Next we move to Cordran ointment 0.05% (flurandrenolide), which was used EXTENSIVELY in my late high school/college years. I’m talking multiple times a day, every day, for about 7/8 years. Not one doctor ever told me otherwise –so I just continued to get scripts filled like it was anything. Lastly diprolene cream 0.05% (betamethasone dipropionate) was prescribed to me around early 2015 when I was starting to catch on that steroids were causing me more harm than good. I only used this for a couple weeks before I quite steroids cold turkey. Also in 2014 and early 2015 I had multiple steroid injections and a couple rounds of oral prednisone.

3. Were you ever prescribed more potent steroids? 

See above.

4. How did you find out about RSS?

From googling uncontrollable, incessant, terrible, (etc) eczema in adulthood and stumbling across ITSAN, Cara Ward’s, and TReczema’s youtube videos.

5. What made you feel you had RSS?

I started to suspect I had RSS early Jan-March 2015. I would flare so terribly if I didn’t keep up with my incessant and inappropriate use of my steroids. I would have anxiety or panic attacks if I ran out and didn’t have a refill called in because I knew what was to come. I couldn’t go away or do anything without steroids. I was 12564641321% completely dependent on those tubes of cream/ointment. And was for years, and had no idea. I couldn’t tell you how many dermatologists I saw around this time. They all said I had uncontrollable severe adult eczema and kept trying to push the stronger steroids/immunos. I saw a naturopath, who agreed to stop the steroids, and pushed a million and one expensive supplements on me (which just killed my pocket and honestly didn’t ease the start of the tsw symptoms).

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

None of the derms I saw believed in tsw. “Intrinsic atopic dermatitis” has been my stricken supposed diagnosis my entire life.

7. What were your first symptoms?

Symptoms: red raw burning itchy oozing skin. The burning feeling is out of this world. In the beginning mostly my face, neck and hands were afflicted. The initial flare was from March 2015-May 2015. I then had a bit of a break, followed by a bunch of shorter, less severe flares. Suffered/suffering from severe anxiety, depression, insomnia, body temperature regulation, hair loss, eye problems. The overall pain was extremely difficult to cope with, and is still to this day. I constantly feel like my flesh is being torn from my limbs with every movement. I’m constantly on fire. I’m near constantly oozing from somewhere on my body. My entire life has been turned upside down. I do not live a life as a normal 20-something, and haven’t in a very long time.

8. Is your family supportive? Friends?

My family has been my rock through all of this. My mom has been my main caretaker. Helping me to bathe, wash my hair, feed me (at some points my arms and hands have been so bad I have very little use of them) and pretty much everything else needed to function on a daily basis. My older brother who is a pharmacist has been immensely helpful in helping me to research and learn new things every day. He is also an advocate for the dangers of topical steroids with his pharmacy customers after watching what has happened with me. And lastly, although tsw has seriously tested my relationship with my boyfriend, he has been there for support and encouragement through it all.

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

No, although family members considered taking me multiple times. I avoided going for a fear of just receiving more steroids because of the state of my skin.

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

Emotionally, I am so drained. I don’t feel like myself. I lash out at the people I love, the people who take care of me. Chronic pain and very little sleep really messes with your head. Physically, I feel like my body is failing me every day. Financially I am ok (for now) as I have managed to continue to work through withdrawal for the most part. I took two months off of work from 15-17 months. So I struggled with money for a short time, too.

11. How long have you been in withdrawal? 

I stopped all steroids March 18, 2015. Currently 19 months. I am no where close to being healed. Currently I am switching between immunosuppressive drugs to remain in a functioning state.

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

Pain meds (tramadol, vicodin), anxiety meds (ativan, paxil), anti-itch meds (allegra, benadryl, atarax), lots of zinc cream/bandages, lots of baths, lots of aquaphor.

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

I’m a vaccine specialist for a pharmaceutical company. TSW has tremendously affected my job, because unfortunately in the pharmaceutical industry it is important to look your best. I had to take an unpaid leave of absence for two months, as well.

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

At 19 months in, the emotional burden has really taken a toll. I have recently scheduled to see a psychology and psychiatrist.

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

If I could say something to another sufferer, maybe just beginning this journey, I’d say to just hang in there…. It seems like you can’t get through and I know how you feel. But the body is capable of amazing things and eventually bouts of healing and relief do happen.


Awesome interview, Kelly!

Feature #6: Sally & Susan

sally-yirkaSally Yirka

Age: 33

Career: Nurse (opiate addiction field)

When did you cease using topical steroids: 10/3/14

What type did you use: Triamcinolone and Betamethasone 

What is your favorite product for comfort? Dead Sea Salt in the bath

What is the hardest thing to deal with during this condition? It has changed since the beginning months to now. Now the worst part is not the physical symptoms, though I still have them and they still suck, it is the mental battle. Currently battling some pretty heavy depression/anxiety.

What is the first thing you will do when healed? I have a whole list, but the thing I have been wanting most is a tattoo. Thinking of getting a tiny Elephant (can’t help but feel connected to them with all my Elephant skin) holding a phoenix feather in its trunk behind my left ear (we all are rising from burning ashes that is for sure).


Susan Ryzasusan-ryza

Age: 63

Career: Jewelry Designer, Crafts teacher

When did you cease using topical steroids: 9/29/2011

What type did you use: FML eye ointment, OTC hydrocortisone, 2.5% hydrocortisone, Rhinocort nasal inhaler, Asthmacort inhaler

What is your favorite product for comfort? I used Vaseline in the early months, then palm oil, then beef tallow. In the last few years, I decided not to put anything on my skin that I wouldn’t eat or at least be a pure, natural ingredient. I’ve been making my own cream mixing beef tallow, shea butter, avocado oil, sunflower oil almond oil and a few drops of lavender essential oil. I also use Hoskings cream (from Australia) on my eyelids. In the last few weeks, however, I’ve found that I’m better off with nothing most of the time, even though I still have dry, rough areas on my arms, hands and parts of my face.

What is the hardest thing to deal with during this condition? Itching! And lack of sleep the first 6 months. I only oozed twice for a day or two, so that wasn’t a problem for me. I also never had lack of energy.

What was the first thing you did when healed? See my friends. I was a recluse for a long time because I was so itchy I couldn’t sit still. Also, just sitting still is such a pleasure!

They Struggle, Too

In September of this year, I had the privilege to accompany ITSAN (the International Topical Steroid Addiction Network) to the CSD/AAD conference in Washington, D.C. as a patient advocate. CSD stands for “Coalition of Skin Diseases” and AAD stands for “American Academy of Dermatology.” There were many dermatologists present, as well as non-profit groups with their patient advocates.

Before flying into D.C., I already had anxiety knowing that many dermatologists weren’t going to 1) know about Red Skin Syndrome or 2) were going to brush me us off as not real.

On the first day, we mostly met with the non-profit groups. However, the second day was geared mainly towards dermatologists. For awhile I was feeling oddly used. I knew that when we had to go speak on Capital Hill, they’d want me to share my story to get what they wanted, not because it would help me in any way about Red Skin Syndrome. So, I had mixed emotions all day long.

What didn’t help was that at the end of all the meetings Day 2, we ran into an older doctor who told us he didn’t like prescribing steroids very much. Intrigued, we sat down with him. We then entered into an hour long conversation about how his method is to dowse his patients in steroids 6x a day to get rid of the eczema. I think I stopped taking him seriously when 1) he looked at me (and I look WAY better than I have been) and told me “I’d consider you severe atopic” and 2) then went to get up and touch my face without my permission. I told him very bluntly he was not touching my face. If someone starts a sentence off with “I know this may sound conceited, because it is…”, how am I supposed to find you educated? Our conversation was getting nowhere with him and it was very disheartening.

On that same day I had met with everyone from Florida and we exchanged names and how we should go about getting business done on Capital Hill. There were two other advocates amongst all the dermatologists. One was for vitiligo, and one was for alopecia. Both of these conditions are known in the dermatology profession. When my turn came, I felt a bit of  the ‘deer in the headlights’ come on when I tried describing Red Skin Syndrome. One doctor in particular stared at me and asked,

“How old are you?”
“I’m 27.”
“Oh.”
“Why how old do you think I am?”
“I thought you were a teenager.”

Others nodded in agreement that they thought I was much younger. I felt defeated in a sense since I wasting viewed as this young, meek advocate, not the educated adult that I am.

Well, the next day, I rode into Capital Hill feeling slightly inadequate. All the legislation that we had been learning about didn’t directly affect or help my fight for awareness, but I tried to find a way for my voice, in my conscience, to matter.

At one point, I was alone with two other dermatologists. One was from the Orlando area, one was from the Melbourne area. The one from Melbourne also had his wife and son with him. While waiting to meet with our representative (Mica), we spoke to his assistant about our wants and needs. When I waited to share my story, I was able to listen to these dermatologists speak about their troubles and business woes due to how the system is run. I suddenly felt a twang of empathy for them. I believe that doctors should be regulated, but it seems the system in place is making it very difficult for them to practice good medicine. They are run down, unable to give their patients adequate attention. They are fighting with insurance companies, being forced to stay later and later at the office to finish menial paperwork, searching for affordable medications for their patients since prices have skyrocketed, and now are faced with their compounding rights being highly regulated. These are things, as a patient, I have never thought about.

So, when it came for me to speak, I felt much better speaking out for the entire group’s plight, not just my own. It helped me realize that patients are not the only ones struggling. Yes, there are plenty of doctors who still give patients a hard time about Red Skin Syndrome and need to be better educated on steroid use, but there are also doctors who are probably just so exhausted that they are going to be defensive.

The way the system is being run now is for money. Representative Mica even bluntly opened up about one of our legislative asks. There is a call for more research money, of which he whole heartedly agrees. However, when I explained our condition he said it was sad that I would most likely not see any research being funded for my condition since it doesn’t generate a profit. This may not be verbatim, but he said, “Generally they will put money into research if they know they’ll see a profitable return, but with you, they wouldn’t be getting that.”

Even HE sees the uphill battle we face. It’s unfair to push us aside because we don’t fit into their pockets.

So that is why I heavily push and advocate for PREVENTION. If the medical community was aware of the correct way to utilize topical steroids, and what the consequences are if they overprescribe them, then we have a fighting chance to keep patients away from this turmoil. And not only does the medical community need to be educated, but so does the public. Too many times we are given a medication and not taught what it is, how to use it, why we are using it, and what the side effects may be when used.

So doctors, please understand that we are just fighting for our health since the system doesn’t seem to be. And patients, please understand that doctors are fighting for their sanity since the system doesn’t seem to be.

The struggle is real. #WeNeedReform