Interview #15: Keina Sabay

Keina SabayKeina 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

DanaeDanae Kirtley

Eureka, California

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

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

2.  What was the name of the topical steroid?

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

3. Were you ever prescribed more potent steroids? 

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

4. How did you find out about RSS?

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

5. What made you feel you had RSS?

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

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

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

7. What were your first symptoms?

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

8. Is your family supportive? Friends?

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

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

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

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

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

11. How long have you been in withdrawal? 

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

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

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

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

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

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

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

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

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


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

Interview #13: Nina Nelson

N.A. NelsonNina 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 8th 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 28th month on Jan 18th, 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

torrinTorrin 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

fullsizerenderJennifer 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

klineKline (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

mattielMattiel Brown

Atlanta, GA

“All Things Must Pass” – George Harrison

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

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

2. What was the name of the topical steroid?

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

3. Were you ever prescribed more potent steroids? 

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

4. How did you find out about RSS?

Video of Dr.Rapaport’s interview on youtube.

5. What made you feel you had RSS?

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

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

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

7. What were your first symptoms?

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

8. Is your family supportive? Friends?

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

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

No.

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

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

11. How long have you been in withdrawal? 

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

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

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

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

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

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

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

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

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


Thank you for such a terrific interview, Mattiel!