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.

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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.

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

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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.

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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.

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

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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:

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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! 

In Our Shoes

I have been wanting to do something like this for awhile. It is just an extremely minuscule snapshot of what gets posted in support groups for Eczema, Red Skin Syndrome, or Topical Steroid Withdrawal.

Many professionals, who are meant to care for a patient, fall (very) short when it comes to speaking about adverse affects with steroids. It is egregious the way some patients are treated in a doctor’s office.

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To be laughed at is already demeaning towards someone who is ACTUALLY trying to inform you of a very serious and highly factual condition, but then, as a professional, negate that it is real… this is where the problem lies. We are told to trust in our doctors and that whenever we have a question or concern, they are who we should be going to. BUT, what if our professionals don’t know it all? Red Skin Syndrome is not a joke and certainly isn’t a laughing matter. To be completely written off and spoken down to while the patient was the one who really knew the truth, is astounding. We should not be having to stick up for ourselves at any medical facility. We are going through enough physically and mentally. Most don’t even try to go to doctors anymore because they are tired of being made fun of when they should be getting the care they deserve and need.

Preventable: Protecting Our Largest Organ will help doctors understand the seriousness behind this condition and how they have it in their power to stop this from ever happening again. 

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“They told me I would have to use this for life.” And we are called steroid phobic because…?

How outrageous to tell a patient that THIS is the only way to help them. It states it clearly on the inserts that this SHOULD NOT be used for long periods of time. To tell a patient that the health of their skin depends on this drug forever is not only an ill educated prescription, but a lack understanding of what these are truly capable of doing.

Preventable: Protecting Our Largest Organ will help disseminate correct information about topical steroids and what they are doing not only on the surface of our skin for long periods of time (even 2 weeks!), but what they are doing to the inside of our bodies as well. 

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Here in lies the problem with Western medicine. They have ONE go to when it comes to skin ailments. Most will stick to that one trick. You most certainly have a chance of getting better without steroids. The problem is that they are taught that only one method, which is meant to help mask symptoms, not offer a healing change towards the cause of your symptoms, works. Now, we do have a few other options, but in my opinion, they are still either so new we don’t have any knowledge on the damage it could also be doing and/or we know the drug is dangerous and comes with risks just like steroids do. But I see in so many posts how doctors asks patients ‘why did you bother coming in if you weren’t going to take the steroids?’ We are paying for their services and care and yet are being treated as if we’ve wasted their time. Perhaps we were hoping for more than just ‘here are some steroids’. It just simply is not acceptable anymore for this to continue to happen.

Preventable: Protecting Our Largest Organ will shatter this opinion of topical steroids are the only method to treat eczema. We have so much new technology and medical advancements that we have the power to truly find out what is causing our skin to lose control. We can test for allergies, irritants, gut problems, stress issues, autoimmune disorders… we can’t go on just nonsensically masking our problems with a medication for long periods of time that can actually cause us detrimental harm in the long run. 

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Again, this type of condescension is not helpful nor is it particularly kind.

Other posts I tend to see are heartbreaking, ones crying out in desperation as to why this is happening to them. They are losing their jobs, their relationships, their family… ALL from a preventable condition.

This has got to end. And we can do it. If anyone feels moved by this project and wants to help this type of suffering, please visit the sponsorship link above for a tax deductible contribution, or visit the donation link above if you do not need a tax receipt. 

Donate Here

 

Feature #20: Rachel & Rachel

rachelRachel 

Age: 24

Career: Unemployed due to TSW

When did you cease using topical steroids: November 2015

What type did you use: Triamcinolone and desonide cream daily for over 10 years. Prior to using prescription strength creams I used over the counter hydrocortisone per my doctors’s advice for the majority of my childhood.

What is your favorite product for comfort? Icepacks for inflamed skin and A&D for cracked lips.

What is the hardest thing to deal with during this condition? It’s impossible to choose just one. The endless itching and full-body aches are absolute hell. The loss of confidence, self worth and freedom are close seconds to the physical pain.

What is the first thing you will do when healed? Grow my hair out and swim in the ocean.


Rachel Feerachel-fee

Age: 41

Career: Stay at home Mum

When did you cease using topical steroids: November 22, 2013

What type did you use: Hydrocortisone, betnovate, eumovate, fucibet

What is your favorite product for comfort? Epaderm cream, mainly Vaseline and Aveeno in the bath. Aloe vere gel for hives.

What is the hardest thing to deal with during this condition? For me the pain, bone deep itch, the burning and constant shedding was a nightmare. Not being able to wear clothes, cuddle my kids leave the house took its toll emotionally. The insomnia was also quite depressing as there was no escape from the pain.

What is the first thing you will do when healed? My healing has been gradual but I have enjoyed and cherished everything in my life especially doing the school run again, going on my son’s class school trip, watching their nativities again. Also just being able to get up and out of the house easier without a two hour bath. I’ve not been swimming yet but is on the list of things to do in 2017. Finally, because I was ill when I turned 40, I am organising a charity fund raising party for Itsan on May 20th 2017 to raise money and celebrate life!

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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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!

The possible irreversible effects of antibiotics

We focus a lot on how chronic use of steroids can cause much damage to our body, inside and out. There are actually many drugs that can do this. One drug that most of us end up using (because of Red Skin Syndrome) is antibiotics. What many don’t know is that this drug can also cause much harm.

At first, some get very defensive on this subject because, if you are told you need antibiotics, you must need them for a reason. Many of us get staph on our skin and are immediately prescribed this drug to help. But we must take into consideration the pros and cons of this drug, not just on ourselves but others.

I think people see their own use of antibiotics as a solo consequence. That if they wish to use them as much as they want then they are the only ones who will suffer the consequences. However, that is not the case. If people begin to overuse this drug, it can change the microflora for the next generation. It is a domino effect that can change the world.

This is a very serious problem when it comes to newborns. One doctor, Martin Blaser, has been vital in this research and whom highlighted his immense concern for babies born from either C-seciton or from mothers who were given antibiotics during the pregnancy. These babies could have an insufficient amount of friendly guy flora, leaving them susceptible to health conditions and problems.

These health problems are often autoimmune related. Even just a one-time intravenous dose of antibiotics can alter our gut flora.

An unbalanced microbiota in the gut is also a contributing factor in autoimmunity. (13) Infection with certain microbial pathogens can trigger autoimmune reactions in joints and other organs. (14) The destruction of healthy gut flora can make the mucosal lining more susceptible to leakage, which some researchers believe is a precondition for developing autoimmunity. (1516) It is well-established that the balance of gut bacteria plays a key role in the formation of a proper immune response. (1718) A lack of healthy gut bacteria is associated with allergies, IBD, and general autoimmune reactions when this immune modulation goes awry.

Now, there are certain situations where we do need antibiotics. We can not always shy away from their services. But there are things we can do to help ourselves out.

Though antibiotics may be necessary in certain situations, it’s important to weigh the benefits of using them with the potential risks that may come from the permanent alteration of the gut flora. If antibiotics must be used (and there are certainly situations where this is the case), special care should be taken to not only restore their gut flora using probiotic foods and supplements, but to eat a diet that supports healthy gut microbiota with plenty of fermentable fibers from starch and the removal of food toxins.

For those instances where we can forgo oral antibiotics, there are other alternatives we can use to help us. You can find these alternatives here: Mark Sisson

We need to truly keep our minds open to these alternatives instead of jumping right into using antibiotics. Much like steroids, they can really hinder our health. And imagine using both at the same time for long periods of time. It can reek absolute havoc on our bodies.

Chris Kresser: High Price of Antibiotics

 

 

Interview #8: Stephanie Miller

stephamie-millerStephanie 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!