Interviews – Preventable: Protecting Our Largest Organ

Interview #15: Keina Sabay

Keina Sabay

Manila, Philippines

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

As far as I remember, I started using topical steroids in mid-2014. Unlike most people who started getting eczema as a kid, I only started to experience it when I was already 27 years old. It all started when I got insect bites from a trek that I did in December of 2013. The bites morphed into rashes that became eczema later on.

2. What was the name of the topical steroid?

I can’t remember the exact kind, but it was a mixture of clobetasol and some other substance. The thing is, my dermatologist would just hand out the creams to me and tell me to apply them twice a day without discussing what they were and without warning that they should not be abused. I may have overused the steroids, as sometimes I would use them more than twice a day.

It was not until a few months later that I realized that these were actually steroids that I was putting on my skin. The same doctor also prescribed Iterax (I think it’s Aterax in the US) to help with the itching and sleeping problems.

3. Were you ever prescribed more potent steroids?

Yes. I decided to stop steroids in November 2014 when I consulted a holistic doctor. But in March 2015, I experienced my first TSW flareup and I ended up going back to a dermatologist. My face was so red and swollen, so I was desperate to feel better. She prescribed a clobetasol cream plus Prednisone. It worked like magic, but my skin would just become worse later on.

4. How did you find out about RSS?

I was searching for natural remedies online and came across Briana’s story. Before I found out about RSS, my holistic doctor had already told me about the possibility of a healing crisis, where my skin would get worse before it starts to get better.

5. What made you feel you had RSS?

The eczema started from insect bites on my arms and legs, and that was where I’d get the rashes. But after stopping steroids, I started getting bumps on my face as well and after a while, my whole face had become one big rash. It was red, swollen, and weeping the whole time. Then my skin would crust over and I’ll have these flakes coming off.

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

My dermatologists would diagnose it as eczema or dermatitis and just give me medication for my symptoms. My holistic doctor, however, made me go through blood tests and assessed that what I was experiencing was chronic inflammation that stemmed from imbalances in my hormones. This doctor was very supportive in helping me overcome my condition with lifestyle changes, proper nutrition, and supplements.

7. What were your first symptoms?

Patches of red rashes on my face, arms and legs.

8. Is your family supportive? Friends?

I am so lucky to have supportive friends and family. My mom took care of me when I was at my worst and couldn’t take care of myself. She prepared my food, washed my clothes and helped me research natural remedies for my condition.

My friends would always consider my food restrictions when we go out for dinner. I appreciate the simple gestures such as letting me pick the restaurant so I’m sure there was something I could eat.

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

Thankfully no. There was just that one time when I went to the ER because the insect bites morphed overnight.

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

I’d say the hardest part was putting my life on hold to focus on healing. It affected so many factors in my life such as my overall disposition, my finances, and my self-esteem. I was used to being independent, so not being able to take care of myself was a painful blow.

11. How long have you been in withdrawal?

I first stopped steroids in November 2014, but I went back around March 2015 before stopping them for good. That’s a little over 2 years.

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

Epsom salt baths helped a lot to dry up open sores. I also used VCO (virgin coconut oil) to moisturize dry patches. I also cut my hair short so it wouldn’t irritate my face. Early last year, I discovered hiking and it played a big part in my healing. Being tired from the hike helped me sleep better and the following day my skin would always exhibit a marked improvement. I’ve been hiking at least twice a month since and I am almost completely healed now.

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

I was working in TV when this happened. I had to take a leave for 1 month, which extended to 5 months. I quit my job eventually.

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

I didn’t go to therapy, but I did make major changes to my lifestyle.

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

Listen to your body. Whatever is happening to your skin is a manifestation of what is happening inside. My doctor also told me this, healing is marathon and not a sprint.

Thank you for such a wonderful interview, Keina!!!!!

Interview #14: Danae Kirtley

Danae 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!!!!!

Interview #13: Nina Nelson

Nina Nelson
Darien, CT

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

I first had eczema as a child but really didn’t use anything for it other than Keri lotion since my parents believed it was just something I had and there was no “cure.” Around 8^th grade it disappeared. It reappeared when I was 30 and pregnant with my first child. The top of my hands became very itchy. The doctor didn’t want to use topical steroids, so he prescribed Protopic. At first Protopic worked beautifully but after a week, it started to burn and make my skin even redder, so I stopped using it. My hands got better on their own.

2. What was the name of the topical steroids?

Protopic.

3. Were you ever prescribed more potent steroids?

After the birth of my daughter, my eyes became very itchy and red. I saw ophthalmologist after ophthalmologist. They diagnosed me with dry eyes and ocular rosacea. The eye drops (Restasis and over the counter wetting drops) they put me on didn’t work. So I saw a specialist from Yale. He tried the same things the other did…in addition to antibiotics ointments in case it was conjunctivitis. Still my eyes didn’t get better. In fact, they got worse. Finally, the doctor put me on a compounded steroid ointment. Didn’t help. We moved on to steroid drops. This whole eye thing went on for about 2 years. After awhile, he said he didn’t know what to do and that he didn’t want me on the steroid drops any more. I didn’t either, so I stopped.

That’s when the skin rashes started. And I saw dermatologist after dermatologist. And allergists. And gastroenterologists. And naturopaths. And acupuncturists. And neurologists (lupus).

Through it all, I was prescribes topical steroids, oral steroids, and steroid shots. From low potency to high potency, for my face, my scalp, my arms, my hands, my legs, I’d walk in and doctors would say, “Whoa, first we need to get rid of this flare with a steroid shot/round of prednisone, then once we get you back to normal, we’ll get you on some creams.” Of course it would work, until the steroid shots/pills wore off and then it would start all over again. And I kept trying different doctors thinking maybe THIS one will have the answer. Nope.

4. How did you find out about RSS?

One day I was googling online and I don’t even remember what I was googling…itchy rash on face/hand/shoulder maybe, and I saw an image of a girl with red circles around her eyes and a “muzzle mouth” just like mine and I thought, “That looks just like me.” When I went to the page, it was the ITSAN site and the more I read, the more I realized that this is exactly what I had…what NO doctor had been able to diagnose me with—even the best-of-the-best-who-other-doctors-referred-me-to-who-didn’t-take-insurance-experts in New York.

5. What made you feel you had RSS?

When I read the symptoms and the history and saw the pictures of all the other people who were going through this, the similarities were too many to ignore. With every new bit of information or every video, and every study that was linked to that site, I kept saying, “This is me. This is me. This is exactly what happened with me. Oh, my God. I know what I have. I’m addicted to steroids.”

I was actually excited. Excited that I finally figured out what it was after all these years of knowing something wasn’t right but not knowing what it was. Excited that there was a cure. And I was ready to stop steroids that minute.

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

I was never diagnosed by a doctor. I had compiled a book of the past 12 years of medical visits, prescriptions, and pictures of me in various stages of flares and when I took them to my GP she looked at them and listened patiently to what I had to say. She said she didn’t think I was over prescribed or that the doctors did anything wrong, but she believed me and was very supportive in my decision to quit steroids and said that she would support me in any way to help me get through this. This included prescribing a low dose hydroxine for the itch and the insomnia and an anti-depressant if I got too low. The hydroxine didn’t really work for me and I never filled the anti-depressant prescription, but I was so grateful for her time, patience, and response. For the first time I felt like I was being heard and taken seriously.

7. What were your first symptoms?
Itchy eyes and then an itchy rash on my face, my scalp, and all over my body.

8. Is your family supportive? Friends?

Yes, although there were some definite rough patches in my marriage

I think the hardest part is that without an “official” doctor’s diagnosis, the withdrawal is not taken as seriously as it would be otherwise.

Obviously, we are sick…we look sick, but I don’t think people realize just how sick we are—on the inside as well as the outside. They don’t realize how exhausted we are from the damage done to our adrenal system and the lack of sleep; how our confidence is gone because we look and feel horrible; how we are in a physical and mental state of torture because of the itch, and the nerve zings, and the sweats, and the cold chills, and the above things I already mentioned. There is no WebMD site to go to that explains that this is absolutely debilitating and patients need time off work and from family responsibilities to heal.

There’s no rehab center for steroid withdrawal like there is for other drug addictions, or pamphlet to hand to family and friends that explains what to expect.

And I felt guilty that I couldn’t be the wife my husband married, or the mother I used to be. But I also put my foot down and stood up for my health and myself. I demanded the time and the rest and the passes from a lot of things and this created friction. I spent huge amounts of money on dead sea salt and water for daily (sometimes twice daily) baths. But I believed so strongly in this diagnosis and my body’s ability to heal and I knew all I needed was time.

And that’s the second hardest thing about this fight…it takes a long time and that’s hard on spouses who are also losing out on time and life for an illness that is not even recognized by doctors.

But yes, my family was supportive. I hid out mostly from society at the beginning. I was so embarrassed that only my closest friends knew what I was going through. Even after I went public on FB and shared my pictures, my story, and all the links with people so they could share with others, I tended to be less outgoing than I used to be.

But that’s gotten better as my skin has gotten better and more time has passed. Now, I go out all the time even with a flare. Who cares anymore? Judge me, don’t judge me. I’ve been to hell and back; your opinion doesn’t matter to me.

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

No, I was lucky. I never had to be hospitalized. I kept infection at bay by taking Dead Sea salt, apple cider vinegar baths. And I’ve gotten cold sores since I was a kid, so I have a backup stash of Valtrex to turn to so I never got eczema herpeticum.

10. What was the hardest part of this condition?

Phew. I have to pick one thing? I’d say not having the energy that I used to before I got sick. The brain fog was tough too…I wondered why I didn’t have the mental clarity. I guess the hardest part was not being my best person and feeling like I was missing out on life because of it.

11. How long have you been in withdrawal?

I will start my 28^th month on Jan 18^th, 2017, so I have 2 years and 3 months behind me. I began November 19, 2014. Every morning I put a big X through the day before as I marked the days off. It gave me strength to see all those crossed off days.

When I discovered RSS, I was on the first day of a 3-day shoot for a popular sleep aid commercial—I was playing the role of the wife of the man who couldn’t sleep. I tried to stop the topical steroids that day, but my skin immediately rashed up and my husband said, “Nina, you can’t do this to these people. They’re paying you to look good. You have to take it for the next three days.” He was right; I had a professional obligation not to show up looking like I fell into a patch of poison ivy, so I sparingly used the topical steroid until the last day of the shoot and then I stopped cold turkey.

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

Dead sea salt baths have been my oasis. I’ve done 20 min DSS baths since day one and am still doing them. I also did moisture withdrawal up until about 3 months ago. Now I feel my skin is healed enough that I use an essential oil mixture on it: jojoba, geranium, lavender, frankincense, myrrh, carrot seed, pomegranate, Vit E.

I also competed in 2 triathlons during this and I know the swims in the ocean and the pool helped to dry out the ooze. I think yoga helped with the detox and the running helped with the lymphatic system…not to mention all these things helped with my mental state. It gave me some power and control over my limited lifestyle. I itched like crazy during the workouts but I felt stronger afterward.

Rest. When I felt exhausted, I knew my body was going through a big healing push, so I slept. I felt so guilty sleeping during the day, but I knew it’s what my body needed, so I dealt with the guilt. I still got up every day with the kids for school, but sometimes I’d fall right back into bed after they left.

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

I was a commercial print model and actress so yes, I had to book out with my very-understanding agent this entire time. She’s been a big champion of mine and I’ll return to it when I’m sure I’m better. The good thing about commercial modeling/acting vs. fashion is that you never get too old—you can always do denture, arthritis, and grandmother commercials. ;D

I’m also a writer, so I was able to do that from home—although the brain fog was a real butt-kicker.

Because of having to give up the modeling, I ended up picking back up with a past job of mine, which is teaching hydrofit classes. I’m teaching twice a week at my local Y and loving it. It gets me out of the house, pays me, and gets those endorphins going…all things that are vital for my happiness.

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

No, but only because several times daily, I turned to the ITSAN and Topical Steroid Withdrawal Facebook pages for comfort. Just hearing about other people going through the same thing I was made me feel less alone during this. Posting on my own FB page helped as well. Social media was my therapy.

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

Stay strong. Head down and do what you need to do to make yourself comfortable. Eat healthy; sleep as much and as often as you can. Listen to your body, it will tell you what you need. Keep living, but above all, be patient and know that even if you can’t see it, your body is healing every single day—on the inside and then on the outside.

Sorry, I know that’s more than one thing.

Thank you so much, Nina! What a wonderful interview!

Interview #12: Torrin Bennett

Torrin Bennett

Denver, CO

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

Torrin started at about 4 months for eczema. Small patches first seen on his upper lip and back.

2. What was the name of the topical steroids?

He was first prescribed hydrocortisone.

3. Were you ever prescribed more potent steroids?

Yes, over the next 8 years of his little life he was on and off of these steroids. Also, under occlusive wrappings (Wet Wrap Therapy for his last two years)

Hydrocortisone, Betamethasone Diapropionate .05%, Desonide .05%,Fluticasone Propionate .05% (external cream),Fluticasone Propionate 50mcg (nasal), Qvar 80mcg,Triamcinolone Acteonide .1%,Qvar 40mcg,Elidel 1%, Fluocinonide .05%, Fluticason Propionate .0005%, Mometasone Furoate .1% (cream), Mometasone Furorate .1% (ex ointment), Mometasone Furoate .1% (ex oint), Protopic .03%,Pulmicort 1mg (inhale), Qvar 40mcg.

4. How did you find out about RSS?

On September 11, 2014 I was researching hemp oil (anything to “cure” him) on Amazon. I was told to check out a few sites in that review and ITSAN.ORG was one of them. As soon as I read the signs and symptoms, I knew without a doubt Torrin had RSS.

5. What made you feel you had RSS?

He was full body red, extreme itchy, dry/flaky skin, water burned and stung him.

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

Yes, his pediatrician listened and read the ITSAN material. Then to just educate her on RSS and/or if we needed any medicines, we confirmed the RSS diagnosis with Dr. Rapaport via telemedicine.

7. What were your first symptoms?

Before we knew it was RSS, Torrin already showed signs of TSW ( “bad dandruff”, dry/flaky eyes and skin, redness, sensitivity to heat and water. When we stopped all steroids on 9/12/14 within a few days he became really red, itchy all over. His legs were swollen and could barely walk. The horrible “pins and needles”.

8. Is your family supportive? Friends?

Yes, our family was supportive. Friends were supportive but many just dwindled away and stopped asking to do things (because we couldn’t). We had no life for 2.5 years, basically.

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

Yes,about 28 months in I took him into Urgent Care because his arm looked like eczema herpeticum. Thankfully it was not.

10. What was the hardest part of this condition?

Everything! Watching your child itch himself till he was bleeding, the pain that followed, “pins and needles”, water like acid on his skin, watching his friends go to school, play sports, vacations, swim etc. We went from a very outgoing, athletic family to holed up inside their prison home for months and years.

11. How long have you been in withdrawal?

Since September 12, 2014, 29 months. Torrin is still in withdrawal and has flares on his wrists, knees and feet but nothing like on or after steroids. He was able to bathe and swim after 1.5 years into withdrawal.

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

At first baths and Aquaphor for 6 months into TSW. After that he chose moisturizer withdrawal so no bathes and very little Lemongrass Balm from Stephanie Home Apothecary and Honeypacificaco.com. Also, ice packs and fans.

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

I have always stayed home with my boys. I only worked part time but had to give that up to take care of him 24/7. Our family, unlike many others, were financially stable.

14. Has this affected Torrin’s education?

Yes! He missed all of 4th grade because he was bed ridden. I homeschooled him online last year and some of this year. He went back to school on 2/1/17. He was also held back a grade.

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

No, we have not gone. Torrin seems to be doing fine and adjusting at the moment. Me, I’d like to go since I have been experiencing depression, anxiety and PTSD.

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

Sometimes just allow yourself to just lay there and breathe if that’s all you can do at the moment. Sometimes that’s all I could do as I laid on my bathroom floor at 2am crying because I watched him go through so much pain.

FAITH in God, HOPE that he will heal and the LOVE for my child is what got me through each day.

Thank you so very much for sharing your story, Torrin!

Interview #11: Jen Hall

Jennifer Hall

Jacksonville, FL

“Nothing is wasted” I heard this from a T.D. Jakes sermon. It basically means that no matter what suffering you’re going through it won’t be wasted…it will be used in some way for your best benefit. It will make you a stronger, wiser, more resilient person who will be more appreciative for the little things in life. You can even use your pain and experience to help others. This saying held true & gave me faith through my healing process (and still does till this day), it kept me going and looking towards the future and how I can use my experience in some way.

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

10 months old. At around 7 months old my parents noticed that I had spots of a skin rash, I was really itchy and the doctors told them to use over the counter creams to keep the symptoms at bay. When they noticed it was getting worse, to the point of wrapping my arms in gauze to prevent me from scratching my skin to bleeding, they took me to a dermatologist and they prescribed me topical steroids.

2. What was the name of the topical steroid?

.025% kenalog (triamcinolone ) cream

3. Were you ever prescribed more potent steroids?

Yes, higher potencies of triamcinolone (the main steroid I used for 26 years of TS use) as well as Desonide for my face, a mixture of steroids and lubriderm, and steroid shots of (I believe) triamcinolone in my hands and feet.

4. How did you find out about RSS?

I didn’t know there was a name for it until I found itsan.org. I had been withdrawing from the topical steroids for a little while already just because I was fed up of being sick and looking into natural remedies to heal my skin. I had found eczema-natural-healing.com and followed the woman, Donia’s story and how she stopped using the creams (and worked on cleansing and diet) and healed her skin. I took the same approach she did and I believe it was months later I found out about itsan.org and that there were doctors who had a name for it: RSS and TSA (topical steroid addiction) and were promoting cessation of steroids to heal the skin.

Following Donia’s approach inspired me to share my own story on my blog eczemaholistichealing.wordpress.com and help others just as she has! I receive many emails from all over the world from eczema warriors and I assist them with advice with diet, supplements and essential oils. I also truly believe that my overuse of topical steroids for 26 years led me to have cancer: stage 3 Hodgkin’s Lymphoma in 2008. This overuse of topical steroids has also lead me to have Keratoconus in both of my eyes (but worse in my right) which I will have to have treatment for soon to correct the misshaping of my cornea and poor vision.

5. What made you feel you had RSS?

All of the symptoms matched up to mine. I’m darker skinned but you can still see redness in my tone. I could never go a day without using some form of topical steroid on my skin, I was constantly itchy, if I would stop using the medication at any point in time my skin would revolt and flare up.

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

When I found out about taking the steps to naturally heal my eczema I knew that no doctor would understand so I just grinned and bared it by myself. I did have a dermatologist at Duke University Hospital that I had before I started TSW (and whom I’d get prescriptions from). When I scheduled an appointment to see her and tell her about what I was going to do as far as cessation of the medications and taking a holistic approach, she flat out told me “well there is nothing we can do for you here, I prescribe medication, so… sorry.” She had no alternative treatments for me, no information about diet or any info on how it truly is possible to be addicted to topical steroids. I even believe that she had said “there’s no cure for eczema“. I still plan on one day showing up and showing her how I got through this and how I’m much better off than I ever was on any cream she wanted to prescribe me! The only doctor who supported me was my oncologist at Duke University. I even showed him horrific photos of the beginning stages of my TSW and he was so impressed by how far I had come (6 months in) and he praised me for taking such control of my health and choosing this route of healing. He even offered info for a holistic doctors that he knew, but I couldn’t afford it.

7. What were your first symptoms?

Hot red skin, raised bumps, intense itch, hot and cold feverish symptoms then came the ooze… the dreaded ooze with huge cracks in my skin. My legs and especially my feet looked like I had a flesh eating disease because the skin was so raw, open, bloody and oozy. The pain and leg spasms were insane, like ants crawling UNDER the skin, and tingles like pins and needles. Showering gave me anxiety as the water stung and burned like crazy, I ended up going months without showering and just washing up not only because of the pain but also because getting my raw legs and feet wet just made it worse.

8. Is your family supportive? Friends?

Yes, very much so. I’m so thankful for my mother for physically taking care of me for so long and for both of my parents for helping me out financially. My parents both felt so terrible and guilty that because of taking me to the dermatologists to use these meds all of this time had got me in this situation.

Just like thousands of parents just wanting to see their child better, they did the best that they knew how and what they thought was right, to take me to the doctor. My mother and grandma would always pray with me and encourage me to keep my faith, let me know that God is always in control and this suffering won’t be in vain. My friends were super supportive and so kind throughout all of my health issues. They never made me feel like an outcast, always encouraged me and spoke healing into me. Still to this day they tell me how much they admire my strength of all that I’ve been through. Hearing those words from them always keep me going.

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

I have never gone to a hospital for TSW as I already knew doctors wouldn’t understand and just want to give me steroids, antibiotics and pain meds. I also couldn’t afford to pay out of pocket for a holistic doctor or naturopath. The one time I went to a clinic for a signed doctors note to excuse me from work, the doctor looked at me as if I was a fool and flat out said that what I was doing “clearly wasn’t working” and I needed to immediately get back on the steroids.

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

Symptomatically the ooze for sure… the smell of it is so awful, the icky sticky feeling it leaves on your skin and when it sticks to your clothes is aggravating, the way it crusts and hardens and itches is maddening. With all of that I know that the symptoms are good things, they show that the body is cleansing properly and getting all of that gross toxic metabolic waste out, by any means necessary. Emotionally and mentally would be holding on to the faith and hope that this will end someday, and digging deep to continue fighting. Just not giving up and giving in to suicidal thoughts that would plague my mind from time to time.

11. How long have you been in withdrawal?

Since March 2012. I still cannot believe that I will be 5 years topical steroid free in March 2017! I can honestly say that I’m about 90%-95% healed, with just some irritation still from my knees down. My legs are just flaky and itchy at times and my feet are the same but with small areas that can get ever so slightly oozy. I’ve been able to comfortably wear socks and sneakers more recently, which is a huge milestone! Some days I have to just wear sandals (thank goodness I’m in Florida lol). I just have discolouration and wrinkling that is really left to repair, but no intense symptoms like the years before thank God!

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

Always reminding myself that “this is temporary” also that, “this pain and struggle will take a fraction of your life to endure and heal”. Lots of prayer and listening to uplifting sermons and gospel music. Reading positive, inspirational books. Crying instead of holding it all in. Crying on the phone to my mom and hearing her encouraging words. Listening to dance music, watching lots of movies and getting crafty. Constantly staying educated about detoxification & healing with food and natural remedies. Seeing my friends and laughing my booty off. And always, always having gratitude, even when I was in the deepest darkest hole I gave thanks to God because I knew the the only way out was to battle through it and that each passing day was one day more without topical steroids… one step closer to full healing. I always tell my readers to give thanks for the good and bad, the breakthroughs and setbacks, because the body doesn’t take overnight to heal because it didn’t take overnight to accumulate toxicity… it will take time and to always trust its natural ability to heal. Have gratitude for the pain because it shows that your body is properly cleansing and that you are becoming the healthiest version of yourself, free from the dependency of topical steroids!

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

I’m currently looking for work, but with my eczemaholistichealing.wordpress.com site I make a small income from the supplements and essential oils that I use and recommend (feel free to reach out for more info: eczema.holistic.healing@gmail.com). I was able to work retail for 1/2 a year, but a TSW flare brought me to quit my job as it affected my legs and feet, making it impossible to put on shoes and stand for any long length of time.

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

I have not, and I would’ve benefited from it for sure in the darkest of times. I found my therapy to be connecting with others through support groups as they knew the struggle first hand and we could all encourage one another, even if it was via the web. I found it amazing at how many people all over the world were suffering and feeling the exact same horrific symptoms as I was, especially when in the very early stages I felt like I was completely alone. It’s also wonderful to see so many doing much better and enjoying life to the fullest!

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

Don’t ever give up, you are a warrior and this pain and suffering you are feeling is temporary… it is literally a fraction of your life dedicated to repairing. It may seem like it’s dragging on forever but it WILL end, the body is so amazing at self healing! Always keep the faith and always have gratitude. Treat your body like the temple that it is with healing foods, lots of rest, exercise and loving thoughts. Focus on the future and the amazing things that you will do when you’re body is healthier, how you will live life fully, be more compassionate to others, share your story to encourage others and be of service in any way you can. Remember that this isn’t “happening to you” but it’s “happening FOR you” to be the healthiest version of you! Continuing the steroids for years and years would’ve only increased the toxicity in the body, and would’ve led to other health issues like myself with cancer and now Kerataconus. TSW is a huge battle to endure and embarking on it is the bravest thing you can do, commend yourself and keep on fighting!

Thank you so much, Jen, for this phenomenal interview!

Interview #10: Kline

Kline (and Loren, Kline’s mother)

Lake Tahoe, California

What doesn’t kill you makes you stronger!

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

Kline started at 4 months old for baby eczema.

2. What was the name of the topical steroid?

Desonide and antibiotic compound.

3. Were you ever prescribed more potent steroids?

His eczema kept spreading and getting worse What kinds? I think dermasmooth was the highest potency we used.

4. How did you find out about RSS?

Google.

5. What made you feel you had RSS?

He looked just like everyone else…red sleeve and all.

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

We saw Dr. Rapaport at 6 weeks off topical steroids to confirm it. Yes, Dr. Rapaport and some homeopathic and chiropractor.

7. What were your first symptoms?

Full body flares.

8. Is your family supportive? Friends?

Yes.

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

No.

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

The length of the withdrawal and watching your baby suffer and not be able to help them or speed it up.

11. How long have you been in withdrawal?

Started February 21, 2012, 4.5 years ago. Kline is still in withdrawal but living his life and much, much better…the itch and skin is managable but not perfect.

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

Popsicles, ice packs, lavender oil, EPROMs salt, Shea butter with essential oils, gauze and tape.

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

I had to take a night job because Kline couldn’t go to school.

14. Has this affected your Kline’s education? He had to redo kindergarten

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

Yes, I think we all have PTSD and depression from this terrible life changing ordeal.

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

Take each moment by moment ..don’t get your hopes up on a time frame for healing, expect more flares to come. And ask for help! You are beautiful and strong and can do this!!!

Thank you so much, Loren, for taking the time for this interview!

Interview #9: Mattiel Brown

Mattiel Brown

Atlanta, GA

“All Things Must Pass” – George Harrison

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

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

2. What was the name of the topical steroid?

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

3. Were you ever prescribed more potent steroids?

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

4. How did you find out about RSS?

Video of Dr.Rapaport’s interview on youtube.

5. What made you feel you had RSS?

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

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

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

7. What were your first symptoms?

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

8. Is your family supportive? Friends?

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

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

No.

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

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

11. How long have you been in withdrawal?

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

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

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

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

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

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

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

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

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

Thank you for such a terrific interview, Mattiel!

Interview #8: Stephanie Miller

Stephanie Miller

Brooklyn/Queens, NY

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

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

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

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

2. What was the name of the topical steroid?

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

3. Were you ever prescribed more potent steroids?

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

4. How did you find out about RSS?

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

5. What made you feel you had RSS?

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

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

Nope and nope. I diagnosed myself.

7. What were your first symptoms?

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

8. Is your family supportive? Friends?

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

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

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

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

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

11. How long have you been in withdrawal?

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

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

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

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

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

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

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

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

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

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

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

Last, but not least….

You are loved.

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

Interview #7: Maja Ster

Maja Ster

Slovenia

‘I am strong and I love myself for fighting this condition so bravely – worsen my symptoms, stronger my love. If I can fight this, I can do anything. I am unstoppable.’

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

I started using topical steroids when I was around seven years old. I got Atopic Dermatitis and due to my symptoms my dermatologist prescribed me my first corticosteroids. My parents didn’t like them, but of course wanted to help me, so they followed medical instructions. I was very itchy at the time and had patches of red and dry skin on a few parts of my body (especially arm and leg joints). So we started applying steroids – who will you trust if not a doctor?

2. What was the name of the topical steroid?

Advantan

3. Were you ever prescribed more potent steroids?

Yes. I was applying Advantan to my skin regularly through all my childhood, never been told that it could be mixed with a cream to be less potent. So I had been using 100 % topical steroids all the time (not very heavily though) and as a teenager realized that they had no real effect on my skin anymore. I got more potent corticosteroids around my 18^th year from my dermatologist. They were called Elocom.

4. How did you find out about RSS?

I was searching through the internet to find a new solution for my skin, because I had one of my bad skin days that day. And I somehow found a blog, written by a girl from nearby town, saying that she had been two years into withdrawal of corticosteroids at that time. She wrote that topical steroids worsened her skin condition and as she had realized later – made her addictive. When I was reading those lines, I stopped breathing and I started to shake. She wrote about her withdrawal process, how bad her skin had been on the beginning and through the whole withdrawal, how she didn’t know if she would survive. I was crying and crying and crying. Because I knew at that point – that I was addicted too.

5. What made you feel you had RSS?

I knew when I read the first post on that blog. It was like someone would finally told me the truth I had already knew. Corticosteroids never felt good on my skin (apart from immediate effect it had on my skin) and my skin was like a wax or something artificial after applying them. I knew because my skin has changed in years of TS usage. Inflammation started to spread over my whole body and it appeared on places not typical for Atopic Dermatitis too. My outbreaks were unpredictable and uncontrollable, it came in seconds and bursted over my whole body.

6.What were your first symptoms?

Fizz with liquid inside and dry red burning patches of skin. Bone deep itch that was stronger than anything that I had ever felt in my life. In the first few days of withdrawal over my hands, arms and back. In the first month over my whole upper body and around month three over my whole body. Shivering of cold in the middle of summer (all together for four VERY LONG months), the shivers, feeling of ants crawling under my skin, heavy shedding of my skin, heavy sweating (for a few months, especially at night), hyper sensibility of skin to everything – from fabric to food and even to my own touch. Insomnia. Oozing, soreness of skin, deep devastating hopelessness and entrapment of my happy outgoing soul in my waning weak sore body.

7. Is your family supportive? Friends?

I am so happy to have my boyfriend, who is super supportive through this whole process. My friends too and my family – it is hard to accept something so brutal, so they needed their time to accept / understand. It was (and still is) hard for them too.

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

No, fortunately not.

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

Accepting that this is it. That everything I have loved and cared about has to be put aside for an indefinite time because my symptoms are taking everything I have away from me. My time, my energy, my patience, my will to live. Itch itself has been so devastating that after a ‘good’ itch attack (sometimes on a bad day even on every two hours or less), I have been left with nothing. Empty shell. All my energy was wasted on that insane itch and to stay sane I had to turn myself off afterwards. I had to stop thinking about everything else and had to focus on just being.

Accepting that all my dreams, desires, wishes, all my hard work to became good at something, to accomplish something, had to be forgotten for that long never-ending period of time. Accepting the feeling of frozenness in the moment, when (almost) everyone around me had lived their lives on like nothing had happened.

Like I would be nearly dying next to them and they wouldn’t even notice. That was the worst.

The inability to explain to my closest people what I was going through in the way that they would really understand. And the inability to do all those things I had wanted to do so badly (from going for a walk or shower without pain to doing my hobbies – later in the process I started to hanker badly for creativity, productivity and physical activity).

10. How long have you been in withdrawal?

I have been withdrawing from 28. January 2015, so one year and 9 months until now. I am not over with withdrawal yet, but I am feeling much better now. I think that it will take one more year or even two or three to be completely healed.

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

I had a no-diary, no-gluten and no-sugar diet for my first 8 months of withdrawal. I don’t know if it has helped on the recovery process, but at that time I reacted to practically everything and I was using the diet as my ‘power’ to have at least something in control. I am using moisturizer creams now (Avene Xera Calm Balm and Zinc Oxide) and I bath when my symptoms worsen (with apple vinegar or sodium bicarbonate). I use tubifast strapping in that case too.

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

Yes, I am, as a student worker. In the beginning of Topical Steroid Withdrawal I had been very lucky to just complete my studying, but had not yet graduated – and I could take one extra year off as a student. I didn’t had to work so hard that year, because I had still lived with my parents, so I didn’t had to worry about my finances so much, which was a life saver.

I had to stop many student jobs and hobbies on the other hand, which affected my life a lot. And it was hard (and still is) starting to do those things again because I lost so much specific knowledge after a year and a half of not doing it. But I’m starting to learn and explore again and I am ready to live a much fuller life now.

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

I think that I will recover my whole life from the withdrawal. From time to time I cry heavily remembering my worst months and meeting my darkest hidden demons, which is a kind of therapy too.

I believe that my therapy will be all the things that make me happy and touches my soul. I will be recovering through dancing, being with all the people that mean the world to me, hiking (hopefully without the itch) and deep conversations with myself and my closest people from time to time.

I truly started to love myself through that process and that is why I am grateful for it. I believe it was meant for me to overcome TSW and it made me know myself 100 times better.

I see my path now. And I’m ready to start walking it.

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

You are strong and very brave. Don’t ever doubt about that. If life had thrown you into that terrible process, you had to be strong and brave enough to fight it, why else would you be the one thrown there? Don’t step on the path towards healing in the role of the victim, but tell yourself that you can do it, that you are a victor!! Embrace the pain and love yourself deeply through that process. It is not fair, it could be prevented, but don’t stress about that through your darkest nights. Focus on surviving, do all you have to do to come through. And remember, it becomes EASIER and it ENDS eventually. IT REALY DOES!

Be grateful for having the symptoms that won’t last your whole life, but ‘just’ a few years. That may sound negative, but it really puts things in perspective. It could be worse! You can always be grateful for something, and that makes life (and even the symptoms) much more tolerable. Be your own comforting inner voice saying: ‘I am strong, I am beautiful, I can do anything, I will manage the next minute / hour / day and I will NEVER give up!’

Spectacular, Maja! Thank you for your interview!

Interview #6: Maartje Francisco

Maartje Francisco

Holland

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

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

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

2. What was the name of the topical steroid?

Bethametasone (potent 3)

3. Were you ever prescribed more potent steroids?

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

4. How did you find out about RSS?

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

5. What made you feel you had RSS?

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

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

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

7. What were your first symptoms?

Itchiness, redness, and burning.

8. Is your family supportive? Friends?

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

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

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

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

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

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

11. How long have you been in withdrawal?

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

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

Dermaviduals, my skinbarrier creams.

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

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

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

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

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

One day at a time, and time will heal!

Amazing interview! Thank you tons, Maartje!

Interview #5: Caroline Langdon

Caroline 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

Robin 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!

Keina Sabay

Danae Kirtley

Nina Nelson Darien, CT

Torrin Bennett

Jennifer Hall

Kline (and Loren, Kline’s mother)

Mattiel Brown

Stephanie Miller

Maja Ster

Maartje Francisco

Caroline Langdon

Robin Winkler

Nina Nelson
Darien, CT