Feature #25: Iylah-Rose

Rhea and iys

Iylah-Rose

Age: 5 and a half years old

Career: Just started school this year (currently manages to attend 50% of the time, and homeschools the other half due to TSW)

When did you cease using topical steroids: March 11,  2016

What type did you use: She started on over the counter low doses in 2014 sparingly (Dermaid, Hydrocortisone Acetate 1%, mild potency), before being put onto moderate potency betnovate 1/5, cortival 0.02%. It would clear for a few days and she’d be pale white, before her skin would erupt in eczema worse than it was previously and she’d be put onto antibiotic cream (bactroban ointment) and a round of internal antibiotics (usually cefalexin) to settle what had turned into a skin infection.

This cycle continued for a few months, while she became more allergic to foods and environmental factors.

We finally got her in to see a reputable dermatologist and she was then put on further antibiotics, potent steroids- Eleuphrat (x2 daily for 4 days with 3 days break, the rebound flares in this 3 day break were horrid for her), Tacrolimus 3% (immunosuppressant protopic – we were told by the derm that this was better for her face because it didn’t have steroids in it, after which I questioned why I couldn’t just use it all over her body instead and his answer was “because it’s too expensive”, it was $50 for a 30g tub, it didn’t last long, we had no idea it was an immunosuppressant!), the next appointment her dosage was upped again, and we were told to keep up with the creams 3x a day for 7 days OR UNTIL IT CLEARED (this was after explaining how horrid the flares were when we stopped for her 3 day break as prescribed in the previous appointments).

She was already showing all the symptoms and signs of RSS, we had NEVER heard of it before, but knew she was getting more and more unwell, this was Dec 2015 and she could no longer eat anything (even her safe food of chicken and rice would cause a facial flare that was similar to that of the beginnings of an anaphylactic reaction) During this time, she had been given oral steroids 3 times in emergency (the latest being january 2016 after she ate half an orange and had painful hives for 48 hours straight).

By February 2016, she was no longer well enough to attend daycare, she was constantly covered in blood and sores, unable to sleep, needed her ventolin puffer twice daily, her IgE levels were 10 thousand times above the normal range and we decided with our GP to trial 6 months removal of steroids as all other triggers had been eliminated. When we contacted our derm and told him our decision, he ceased all contact with us.

What happened next was beyond hell. That’s when we found itsan.org and it all clicked! I remember being so happy we found the solution and thought, a few months is going to be hard but we can do this… after 6 months I remember promising her by summer she would be better, when summer came I promised her by next summer she will be better…

What is your favorite product for comfort? It has changed during the months, to start with she could not stand any water and we sponge bathed her a few times a day, she also spent the first few months in soft pj’s and resting as she had no energy. We did full GAPS with her to heal her gut, this was hard but she was so sick and so reactive she didn’t mind having soup every day (and gummies!). Then, by month 3, the only place she was comfortable was in the tub, the water had to be hot and she would stay in there for hours, sometimes up to 6 hours a day. She would watch movies in the bath, eat her lunch in the bath.. we spent a lot of time in the bathroom! This was her main comfort for months, and the only way to ease the constant crippling itch attacks and keep her body clean as her skin was raw and open with ooze, and again it was pj’s everyday, we even had day pj’s and night pj’s! She was wet wrapped all over to stop her from sticking to her pj’s, and her face was bandaged to keep the open rawness protected (even the wind would sting if she went outside)

By month 8, she was showing signs of healing and was finally seen by the specialists at the Children’s hospital, they applied for IVIG therapy for her (Intravenous Immunoglobulin) and this started in month 9 TSW, she has the infusion monthly via cannulation, and she absolutely hates the needle but when I ask her now what makes her feel better – she says her medicines from her needle. She has improved ten fold in the last 4 months, and although the hospital hasn’t agreed to her being in TSW (she is considered as severe eczema) it has been a godsend in helping her move forward, she was even able to start school this year! There was no way she was able to leave the house for more than 45 minutes a few months ago with out having a complete crippling itch attack, so it’s comforting that her immune system is on the mend.

What is the hardest thing to deal with during this condition? Not being able to play, to run, to jump, to go to school, to dance, to do sport, not being able to be normal like before steroids.

What is the first thing you will do when healed: Go to school full time! – Iylah

When we can afford to, we will be taking our family on a much deserved holiday! To the sunshine, to enjoy the water, the sand and the sun without any pain xx

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!

Feature #24: Taylor & Blair

taylorTaylor 

Age: 26

Career: Homemaker

When did you cease using topical steroids: December 9, 2012

What type did you use: I’m unsure of all the names: topical steroid creams, Ellidel, and a round of herbal pills that contained steroids

What is your favorite product for comfort? Shea Butter

What was the hardest thing to deal with during this condition? Not being able to perform daily tasks because it was too painful to outstretch my arms or turn my head. Feeling self conscious in public or when meeting new people.

What was the first thing you did when healed? Wore short sleeves! Played outside in the heat with my two little boys.


Blair Dunkin-Salleyblaire

Age: 21

Career: Unemployed due to TSW soon to be a Licensed Esthetician

When did you cease using topical steroids: September 1, 2016

What type did you use: Locoid Lipo cream on and off since ’15, Fluonicide .01% for body for 8 months, 3 injections, and 1 round of Prednisone

What is your favorite product for comfort? Sticking my head in the freezer and Aloe Vera from a plant

What was the hardest thing to deal with during this condition? When I had a Staph infection on my face and arms for over 3 months and did not know it, and showers. Showers are torture.

What was the first thing you did when healed? Get a job at a Spa, wear short sleeved EVERYTHING, take long warm baths, and wear make up whenever I feel like it! Also I’m going to continue to be very out spoken about TSW in the Esthetics community, and hopefully develop a skin care line that specializes in the treatment of TSW, Eczema, Psoriasis, and Dermatitis related conditions of the skin; or maybe even opening my own spa with a TSW rehab package on the menu. Sky’s the limit!

More From Sufferers

Hey Preventables,

I wanted to make another blog just showcasing some of the things that are being posted in the groups. This PREVENTABLE condition is causing so much pain and suffering. All I wish to do is play a role in ending the overprescription of topical steroids so this pain can end. Please consider donating to this cause either through the project PayPal (preventable.doc@gmail.com), or through the donation link on the front page.

NEW 2

Way too many of us get laughed at in a doctor’s office. How inconsiderate, especially if we are bringing FACTUAL resources with us written by other doctors.

NEW 3

This is so much more than a skin problem. Our mental health comes into play and we need all the support we can get.

NEW 5

NEW ceri

NEW

Doctors are prescribing these drugs to be used on places the very drug itself says NOT to be used on. There needs to come a point where the “DO NOT USE PAST 2 WEEKS…. unless prescribed by your doctor” needs to be abolished. Just because the doctor says to do it, doesn’t mean the warning on the label goes away.

NEW4

NEW6

I, personally, did two sets of tapering oral steroids. My skin gradual got better on the pills, but as soon as it tapered off, I went right back into this mess.

NEW8

NEW9

How unfair this that? Even when there is proof, a doctor is going to deny it? It makes absolutely no sense.

NEW10

So many people who don’t believe in this say they think its outrageous that people are doing this and should go back to the drugs if they are suicidal. When will the thinking start turning towards saving people from this by actually prescribing these drugs correctly/actually finding out the cause of the patient’s problem instead of continuing to endanger patients and call them crazy for ceasing to use a drug that is literally destroying them from the inside out?

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I saved the best for last. This hits home for so many sufferers.

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This is not about bashing steroids. This is about showcasing how overprescribing these drugs are ruining people’s lives in every way imaginable.

Feature #23: Katie & Ashley

Katie Vickers.pngKatie 

Age: 21

Career: Unemployed, had to medically withdraw from school

When did you cease using topical steroids:  July 2015

What type did you use: I used Triamcinolone 0.1% for 8 years, had a few rounds of oral steroids/shots of Kenalog

What is your favorite product for comfort? Lemongrass Balm and Frankincense

What is the hardest thing to deal with during this condition? The hardest part of TSW is the physical pain. There are days where I’m in so much pain that I can’t even think straight. The ooze is a close second though.

What is the first thing you will do when healed? First thing I’m doing is taking a trip somewhere fun and exciting. I’m not sure where yet, but I’m going to make sure to live it up and not to take life for granted. Oh, and I’m also gonna drink a margarita.


Ashley  ashley-c

Age: 29

Career: Attorney and Dance Teacher

When did you cease using topical steroids:  November 24, 2015

What type did you use: I used many different types, but the last two I was on were triamcinolone and clobetasol

What is your favorite product for comfort? 3 things: 1. White t-shirts- they’re great to wear around the house because they are loose and breathable and I also use them to wrap my arms or neck during flare-ups; 2. Benadryl to help me sleep during the unbearable itchy nights; 3. Aquaphor

What is the hardest thing to deal with during this condition? Sleepless nights dealing with the bone deep itch & trying to maintain as much of a normal life as possible

What is the first thing you will do when healed? Workout and take a pain free shower

ITSAN — Doctor Pages

As many may know, ITSAN.org is the non-profit organization that advocates to help fight against Red Skin Syndrome and stands as a refuge for those who are suffering and have no support. ITSAN stands for International Topical Steroid Addiction Network.

The team leaders, Joey VanDyke (President) and Kathy Tullos (Executive Director), have poured their heart and souls into this organization to help out everyone who is lost and weary while enduring this heartbreaking condition.

One way they give back is by making it as easy as possible for sufferers to advocate for themselves. These woman get paid hardly any money to do full time jobs in order to make this possible.

Kathy went above and beyond and created this detailed, incredibly informative page that we all can show to doctors in order to help them see that this condition is not only real, but should be taken very seriously.

DOCTORS PAGE

Please, use this page whenever you are trying to inform doctors of Red Skin Syndrome. Here is just some of the wisdom found on this page:

Screen Shot 2017-03-08 at 9.33.20 AMScreen Shot 2017-03-08 at 9.33.37 AMScreen Shot 2017-03-08 at 9.33.47 AM

This page should be utilized in every way to spread awareness.

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! 

Feature #22: Zuzana & Kara

zuzanaZuzana 

Age: 32

Career: Work at a help desk, but now on Maternity Leave (but may have had to quit due to TSW if it wasn’t for Maternity Leave)

When did you cease using topical steroids:  Sept. 17, 2016 (Previous tries — 10/15, 12/15, 3-6/16) Also ended Cyclo (an immunosuppressant) 300mg in January 2017

What type did you use: Dexa- and betamethasone ointments, Hydrocortisone and methylprednisolone shots, 1 round of oral steroids – Prednisone in 02/15

What is your favorite product for comfort? Vaseline + ichthamole and zinc oxide, tea tree oil for scalp, Probiotics, gluten and alcohol free diet. When I use the bath: Dead Sea salt, Epsom salt, ACV, tea tree oil, but now I just shortly shower

What is the hardest thing to deal with during this condition? Insomnia – the nights, hair loss, how itchy and oozy it is, being scratched to death and not being able to do anything about it, to care for my baby, to wear clothes – People thinking it us just a rash and telling me not to scratch – Being a burden to my family – Skin and smell is everywhere

What is the first thing you will do when healed? Take my daughter to the pool as she loves water and to swim, enjoy life again, live again and touch my dogs again.


Kara kara-headshot

Age: 38

Career: Attorney and COO

When did you cease using topical steroids: September 30, 2012

What type did you use: Cloderm

What was your favorite product for comfort? Dead sea salt baths, castor oil

What is the hardest thing to deal with during this condition? Disfigurement of my face and anxiety about seeing people, especially at work because I was a trial attorney at the time.

What was the first thing you did when you healed? I got dressed up, took off my glasses, and went out to a nice dinner at a winery with my boyfriend. A couple of months later I also cut off my hair, which I had been hiding behind during my recovery.

Feature #21: Danny & Fleur

Danny Brooks.jpgDanny Brooks

Age: 24

Career: Was a sports staff member for RCCL

When did you cease using topical steroids: Oct 20th 2016

What type did you use: A large variety of tablets and creams over several years

What is your favorite product for comfort? Cetroben (heavy moisturizer)

What is the hardest thing to deal with during this condition? Around the 2 month mark I developed loads of tiny blisters all over my feet which burst when I walked making it incredibly painful to stand and walk until they eventually healed after about a week. (also happened on my hands)

What is the first thing you will do when healed? Reapply for my job as I loved my short time working on cruise ships!


Fleur Rose Blanchelorraine-blanche

Age: 10

Career: n/a

When did you cease using topical steroids: Nov. 13, 2016

What type did you use: Used Betnovate on and off since October 2015 for patches of eczema behind the knees and inside of elbows.

What is your favorite product for comfort? Calendula talc when skin won’t tolerate ointments. When it can, I like Egyptian Magic cream

What is the hardest thing to deal with during this condition? The flares with oozing, (they scare me), the itch is worst part now , also having to give up dancing and pulling out of a show in February. I miss my friends, school and gymnastics.

What is the first thing you will do when healed? Playing my instruments and dance lessons.

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!

Feature #19: Liz & Joana

liz-kingElizabeth King

Age: 40

Career: Unemployed due to TSW and fibromyalgia

When did you cease using topical steroids: June 13 2015

What type did you use: Honestly can’t remember them all.

What is your favorite product for comfort? A bath with sea salt, apple cider vinegar, and Aquafor. I also take LDN which helps.

What is the hardest thing to deal with during this condition? The pain (physical and emotional) and shedding.

What is the first thing you will do when healed? Swim in the ocean!


Joanna Hinzjoanna-hinz

Age: 31

Career: Unemployed due to TSW

When did you cease using topical steroids: May 2015

What type did you use: Fucicort, Elomet, Hydrocortizone, Elidel, Protopic, Elocom

What is your favorite product for comfort? Beeswax/Olive Oil, Lavender essential oil as a sleeping aid, apple cider vinegar

What is the hardest thing to deal with during this condition? 

It is very difficult to narrow down only one part which was the hardest since the condition affects all parts of your life. I will just try to say what I feel are the top three hardest things:

* Being bedridden with your life being on hold and the disconnect from the outside world due to physical non-functionality, chronic pain and anxieties, while everyone around you is chasing their dreams and continues with normal day to day life

* Having no relief or break ever and months and months of sleepless and itchy nights, the suffering which goes with it during those hours of no sleep; while my body needed all the rest to re-gain strength and energy for my next day of trying to cope with responsibilities as a mother and wife, with no family support as I do not live in my home country.

* The way the condition affects a previously healthy mind in the worst ways possible and messes with your perception of the world around you, yourself, your loved ones, bringing the darkest and most negative thoughts you never knew existed before.

What is the first thing you will do when healed? I will love pursuing my career, enjoy the warmth of sun rays on my skin, go to the beach and swim with my son in the sea, go back to my passion of being physically active: working out, dancing and yoga.

Another New Drug

Very recently a new drug was introduced to the atopic dermatitis community: Eucrisa

This drug is different from Protpic and Elidel, which are immunosuppressants (Tacrolimus cream/ointment) that inhibit T-lymphocyte activation and the transcription for genes which encode IL-3, IL-4 and IL-5. (source) These drugs come with their own risks, one of which is the black box label (possible cancer causing agent).

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Not exactly the best drug alternative from topical steroids, but we all know about topical steroids and their effects.

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But now we have the new Eucrisa to examine.

I have been trying to do a little reading about it. It is not like Protopic and Elidel. It is a phosphodiesterase 4 (PDE-4) inhibitor.

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The trial seemed to fair well with most participants, although there were some adverse reactions. The most severe one was hypersensitivity to the active ingredient, crisaborole. Infections, from what I read in the source material, was the highest issue (11.7% of trial patients).

The trial lasted 28 days where participants applied the drug twice, daily. This is the expected prescription for the drug. Since we do not know much more about the new drug, I personally stress sticking to this prescription and NOT using this drug for more than those 28 days. Is there a tapering protocol in effect? Not that I can see. Just cessation after the 28 days .

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I hope this helps everyone out a bit if their doctor suggests using this new medication, or the Protopic/Elidel. Again, personally, I would steer clear of the immunosuppressant creams and ointments. They seem to have many of the same effects as topical steroids.

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