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!

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! 

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!

Feature #1: Joanne & Sandy

Joanna Andersonjoanna-anderson

Age: 36

Career: Daycare provider. Forced to close business due to RSS. Unemployed.

When did you cease using topical steroids: April 2015

What type did you use: Clobetasol propionate.

What is your favorite product for comfort? Curel itch defense with ceramide.

What is the hardest thing to deal with during this condition? Having to be alone taking care of my newborn despite the pain.

What is the first thing you will do when healed? When I am healed I will help others in need.


sandy-weindbergSandy Weinberg

Age: 53

Career: Customer service Representative for ReadyRefresh by Nestlé (Nestlé Waters)

When did you cease using topical steroids: I stopped using prednisone the beginning of June  2015

What type did you use: Mainly oral prednisone, also Triamcinolone, Desonide Cream and Clocortolone Pivalate Cream

What is your favorite product for comfort? I have a few favorites: Stephanie’s Home Apothecary Body balms, coconut Oil and Cerave products, also started using Germolene cream…love it!

What is the hardest thing to deal with during this condition? Working out and running. Saying no to going out with friends. Not being able to sit in the sun. Missing a lot of time from my job .

What is the first thing you will do when healed? Possibly run a marathon! Spending more time with family and friends. Just enjoying life! Traveling and meeting some of the others who have gone through like myself.