Feature #4: Adele & Tessa

Adele Newmanadelenewman

Age: 30

Career: Barmaid

When did you cease using topical steroids: July 2015

What type did you use: Prednisone. Eumovate, Elecon, Betnovate,Trimovate.

What is your favorite product for comfort? Aveeno skin relief lotion and vaseline

What is the hardest thing to deal with during this condition? The pain and being unable to move somedays. Not being able to look after/do things with my 2 kids the way I used to.

What is the first thing you will do when healed? Take my kids swimming, do as much activities as I can with my kids, and treating myself to new clothes that don’t have to be cotton and long sleeved!


Topical Steroid Label

Whenever we purchase a prescription, there is always an insert or attached label outlining that specific drug’s usage. More often than not, we toss it into the trash. What we should be doing is taking the time to read the insert because it holds extremely valuable information. However, on the contrary, there is misguided information that needs to be looked at closely.

The following is seen on the insert for Clobetasol Propionate, a Class 1 Super Potent steroid:

In bold letters: do not use for more than 2 weeks, 50g per week, because it can suppress the HPA axis.

First off, it warns not use to this for more than 14 days. What it does not say is “Do not use for more than 14 days unless your doctor thinks it’s cool.” There is a definite reason why it states that warning despite what your doctor tells you.

HPA axis suppression is not something you, or your doctor, should take lightly. You are highly increasing your chances of developing Red Skin Syndrome and creating an imbalance in your adrenal glands.

Also, what does 50g a week mean to you? Most likely nothing because you are not a doctor and have no idea how to measure out 50g.

Let’s say your doctor gave you a tube that was 60g large, and their instructions were to “use on flaring areas once a day.” That was it. That was all they told you. Well, your thighs, hands, elbow area, and neck are flaring. These areas combined, using the fingertip method, come out to around 10g a day of use. 10g x 7 days = 70g a week. That is over the maximum limit of use.

But let’s take this further. In bold, the insert states:

“Precautions: General: Clobetasol Propionate is a highly potent topical corticosteroid that has been shown to suppress the HPA axis at doses as low as 2g per day.”

2g per day! That is around 4 fingertip units a day.

2g x 7 days a week = 14g a week. So, more accurately, 50g a week is WAY too much. Even if 14g a week is seen as the ‘minimum’ to cause HPA axis suppression, that means THERE IS A POSSIBILITY it can happen with just 14g a week, which in turn shows there is a LARGE POSSIBILITY it will happen at the ‘safe usage’ of 50g a week.

That 36g difference is remarkable. This is something that rarely ever gets explained in a doctor’s office. When a doctor gives you the instruction to “use sparingly”, this is what they should be explaining to you.

But let’s move on.

When using steroids, adults are not equal to children.

“Pediatric patients may be more susceptible to systemic toxicity from equivalent doses due to their large skin surface to body mass ratios.”

First off, the word systemic should bounce out. If any doctor tells you that topical steroids “are not systemic”, they are lying to you. Just because you are not orally using them, does not mean they do not penetrate our skin and enter our system.

And two, this should put up a huge warning flag. If 14g a week is the lowest dose they saw suppression in for adults, try halving that, or even one quarter. That would be between 4g and 8g a week for small children and babies. And, because they are smaller, there is a larger chance of suppression. Besides, in bold caps, the insert says, “Use in children under 12 years of age is not recommended.” If a doctor prescribes this to a child under 12, especially a baby, know that this recommendation should read more as a forbiddance.

“If concomitant skin infections are present or develop, an appropriate antifungal or antibacterial agent should be used. If a favorable response does not occur promptly, use of clobetasol propionate should be discontinued until the infection has been adequately controlled.”

First off, you’ve got the vague “promptly” in there. Give us actual numbers, perhaps, “1-2 days”. And secondly, you should NEVER use steroids on an infection. It will just make them worse. Check out Tinea Incognito.

“#5 Patients should inform their physicians that they are using clobetasol propionate if surgery in contemplated.”

I had never heard of this before, so I do hope this information is shared in the doctor’s office and not left for the patient to (not) read in the insert.

And last, but certainly not least, in lovely bold writing, “should not be used on the face, groin, or axiliae”. This isn’t a recommendation. This is a definite warning.

Feature #3: Megan & Sheryl

Megan Garza megan-garza

Age: 25

Career: Unemployed due to TSW

When did you cease using topical steroids: September 2014 last application of TS

What type did you use: Clobetasol, Triamcinolone, Fluocinolone and Protopic 0.1% ( I’ve also been on iv/ oral rounds)

What is your favorite product for comfort? Lemongrass balm, avene thermal spring water, & organic rose water

What is the hardest thing to deal with during this condition? The beginning days of TSW when I had cracks all over my face/ neck and oozing. Having my hands completely covered with RSS as well as oozing blisters on all my fingers. Self esteem has been shot down completely due to TSW as well as having anxiety.

What is the first thing you will do when healed? Wear a short sleeve shirt with jean shorts. Then I would take off to a beach and wear a bikini 24/7 and soaking up some sun rays.


sherylmorrisSheryl Morris

Age: 36

Career: Systems Support Officer, University of Dundee, Scotland

When did you cease using topical steroids: 1st time Sep 2010, 2nd time was 6th Jan 2013 (however was on orals between Mar 2013 and Dec 2013). Date stopped using any type of steroids 21st Dec 2013

What type did you use: Hydrocortisone, Elocon, Dermovate, Betnovate creams/ointments. Also used Haelan Tape (tape impregnated with steroids), oral steroids (prednisolone), hair mousse (betnovate in it)

What is your favorite product for comfort? The turning point for me came when I started using a combination of Milton bleach solution on patches skin that kept getting infected along with Manuka honey under cotton gloves for my hands overnight. I also found using Moogoo shampoo, conditioner, baby bubbles wash and nut oil free moisturiser really helping. I also use a nettle moisturisers made locally in Scotland. I used several different products over the years, some helped at different stages of the process – for example, heavy 50/50 really helped my skin when it was red raw but trapped heat and bacteria in so in the long run actually made it worse, and more itchy.

What is the hardest thing to deal with during this condition? Recurring skin infections, lack of support from doctors/dermatologists, the uncontrollable itch, the pain, the wet feeling of ooze, feeling disgusted, the flakes of skin EVERYWHERE, depression, anxiety

What is the first thing you did when you healed? First thing I did when I got my first real break was go to Glastonbury festival and few months later got married, I did have several skin infections after this so it took a while longer before I felt truly healed.


 

Interview #1: Joey VanDyke

JoAnne (Joey) VanDyke14364711_10208836120492432_2954530378884912840_n
Southwest Michigan

“Three things will last forever–faith, hope, and love–and the greatest of these is love” – Apostle Paul

When did you start using topical steroids? I don’t know exactly what age as I had eczema as a baby, but I’ve used it since childhood. My older sisters remember my mother rubbing some kind of cream on the inside of my knees and elbows and putting socks on my hands every night when I was young. I remember chewing holes in the socks to scratch.

What was the name of the topical steroid? I only remember a few names of TS since my eczema started in my infant days and my mother may have used them on me as well. Aristocort, Westcort, Kenalog and Triamcinalone.

Were you ever prescribed more potent steroids? I think the ones I was prescribed were pretty much the same strength as my fingers would clear well with the ones I used.



How did you find out about RSS? It took about five months of trying to fix my skin myself with various remedies before I found out about Red Skin Syndrome. The TS stopped working for me at age 55 in late September 2010 and my chest and stomach broke out into progressive weird, itchy hives all that would not clear up, even with the steroids. My doctor prescribed oral steroids for me but I did not take them at that point.I surfed the internet and found Dr. Wheatgrass’ forum and emailed him for help. He advised me through his online support group to use small amount of oral steroids and to keep tapering down from them until it cleared, but after a few weeks of that, I realized it only delayed the inevitable.

By this time, of five months into ceasing all topical steroids and trying orals, I was desperate. My body now had all kinds of symptoms going on, spreading rashes, red, hot burning skin over much of it and the classic “red sleeve” on both arms that distigushes Red Skin Syndrome from eczema and other skin diseases.

I ended up surfing the internet once again in total anxiety with the phrase “steroid cream side-effects” and Kelly Palace’s “Addicted Skin” website popped up. I immedieately emailed her and she answered me back the next day, explaining her red skin symptoms and I had that emotional light bulb moment so many of us describe. I joined her small Google support group and learned all about Red Skin Syndrome there and got heavily proactive in the cause to prevent RSS and find ways to treat or cure it.

What made you feel you had RSS? The many symptoms of itchy hives, spreading rashes, hot, burning skin, lumps, freezing cold, sweating, insomnia, nerve zingers, weight loss, eye problems, “elephant” skin, insane itching and flaking… did not match any eczema I’d ever experienced. Once I saw Kelly’s same symptom pics, heard her story along with the others in the support group, I knew I had the same steroid-induced disease as they did.

Were you diagnosed by a doctor? No, my doctor had never heard of steroid-induced anything and was at a loss for what it was. Dr. Rapaport eventually spoke with her on the phone and explained RSS to her and how to keep me comfortable the best she could.

Did you have a supportive doctor? Yes! She went above and beyond to see me when I needed her,  monitor my symptoms, listen to concerns, prescribe comfort meds and check my bloodwork. She felt very bad that this physical trauma had happened to me. She is now supportive of my work with ITSAN and any patient that would come to her with it.

What were your first symptoms? Oddly enough, mine were itchy hives and then spreading rashes. The burning hot skin and red sleeves did not manifest until five months after stopping TS. Some people are what I call “slow burners” like I was.

Was/Is your family supportive? Friends? Yes, my family was very supportive as they had never seen me this sick. It felt like I was going through Chemo treatments, had third degree burns and was literally wasting away. They were scared and stood by me lovingly and immensely. My grandchildren made me get well cards and poems often, which would bring on a river of tears every time  they brought them to me. Friends were not as supportive, simply because they didn’t know what to say or do and I could not visit with anyone very long due to the scratching and living mostly in my bathtub and bedroom for two years.

Have you ever been to a hospital for this? Why? Yes, I was peaking in my worst symptoms in November and December 2011, which was 15 months after stopping TS. I had sever nerve pain all over my body which could have been intensified by the fibromyalgia that I had been diagnosed with in 2000. I had such bad nerve pain and was so red and frail that I could not function anymore and thought I had sepsis.   I went to the ER and the doctor said I did not have sepsis and wanted to prescribe oral steroid for me. I refused and he walked out of the room and said he could not help me then.

Two weeks later I went into another local hospital ER with extreme nerve pain, burning and fatigue, still. This doctor was a lady who believed me and she gave me an IV of pain meds, sedative and stomach buffers. I ended up using those meds and others often for the next 15 months as my journey was hard.

What was the hardest part of this disease? The 24-7 nerve pain and bone deep itching that lasted way too long.

How long did RSS last for you? A total of 62 months but the worst phase was for 27 months. About 98 per cent of my skin healed after 27 months but it took another 35 months of very slow, almost stagnant healing on that last 2% of my skin to heal.

What did you use as comfort measures during this time? Prayer, keeping hope and releasing my tears often. Hot Epsom salt baths about six times a day, heating pad or hot water bottle, white palm oil, vinyl gloves on my hands and various meds.

Are you employed? Fortunately, I was not employed as the fibromyalgia I was diagnosed with and a ruptured disc in my back had taken me out of the physical work force years prior.  I spent all my time when not in the bathtub, helping others in the support group.

Have you gone to therapy or wish you had? I have been to therapy before due to past trauma in my life resulting in PTSD so I utilized all of my counseling “tools” and did the best to keep myself sane and hopeful. The support groups were a lot of therapy for me and that is why I started a couple more.  I now go to physical therapy once a month for osteoarthritis, fibromyalgia and chronic joint and bone problems, which I strongly suspect were helped along by the steroids. My hope is that my body is still healing on the inside as well as my skin did.

If there is one thing you could say to another sufferer, what would it be? You are not alone. Take this one hour at a time and don’t set a time for your recovery, it’s too discouraging when it does not end when you think it should. Keep hope in your mind and heart for healing, even if it’s not the total healing you desire. This is not a lifetime disease, many RSS vets have come through this recovered and gone on with their lives.  It’s not what happens to us in life but how we respond. This suffering can make you a better, more compassionate person if you allow it.  Become proactive to help get RSS known and prevented. Share your story, encourage others and stay positive. This will pass!


Thank you Joey for such a great interview!

Feature #2: Ava & Christine

Ava Knappava-knapp

Age: 5 years old

Career: I start kindergarten next year

When did you cease using topical steroids: January 16, 2016

What type did you use: All kinds but chlobetasol foam .05%  is the last one I used.

What is your favorite product for comfort? Homemade zinc cream and Dead Sea salt baths

What is the hardest thing to deal with during this condition? The burning and itching has been the hardest part. I really didn’t like all the skin I found in my bed. I’ve lost a lot of hair and some fingernails along the way, too.

What is the first thing you will do when healed? Wear dresses and sandals comfortably!! I also want to take a dance class again and be able to wear the recital outfit without having a reaction this time.


christine-lozanoChristine Lozano

Age: 26

Career: Marriage & Family Therapist

When did you cease using topical steroids: June 15, 2016

What type did you use: Not sure exact names of topicals, but many different creams/ointments of various strengths. Most recently used oral steroids (Prednisone) April-June 2016 (for 8 weeks)

What is your favorite product for comfort? Zinc cream. Many natural supplements prescribed from my wonderful naturopthic doctor.

What is the hardest thing to deal with during this condition? There are absolutely no words that could describe the physical, mental, and emotional pain of this journey. Every single day-to-day activity became an excruciatingly painful moment.

What is the first thing you will do when healed? I wouldn’t consider myself healed, but I’m in the process! When I am healed, I will exercise, sweat, take a completely pain-free shower, and smile.


 

Feature #1: Joanne & Sandy

Joanna Andersonjoanna-anderson

Age: 36

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

When did you cease using topical steroids: April 2015

What type did you use: Clobetasol propionate.

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

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

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


sandy-weindbergSandy Weinberg

Age: 53

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

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

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

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

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

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

Patients Like Me

One of the biggest questions concerning Red Skin Syndrome is just how many people have suffered/are suffering through the condition. With the high number of misdiagnosed patients, there will never be an accurate number until this condition is accepted in the medical community by all practicing doctors.

However, there are ways of getting our numbers out into the world.

One site that can help in this process is PatientsLikeMe.

PatientsLikeMe allows you to not only enter a diagnosis of Red Skin Syndrome (of which 22 on the site have logged), but it allows you to keep track of your progress.

There is:

  • An About Me section
  • A Height and Weight section (can also find BMI)
  • An InstantMe section (you answer the same question everyday to track yourself)
  • A Quality of Life section
  • A Labs and Tests section
  • A Symptoms section (pain, insomnia, etc)
  • A Treatments and Medications section
  • A Hospital Tracking section

And, to top it off, you can follow all those with your diagnosis to see their progress and stories.

It takes about 15 minutes to set up (you get 3 stars for setting up all the categories). The most important part however is putting in “Red Skin Syndrome” as the diagnosis. That way, it can track how many on the site have this condition.

If you are not able to monetarily help the documentary project (RSS can drain our pockets), this is an important and powerful way to assist in this movement. It may not be a true database, but it certainly can help us see how many may be suffering through this. Please, take this time to fill out your profile.

PatientsLikeMe 


Thank you so much for taking the time to raise awareness about the overprescription of topical steroids and how urgent it is to get this message across in the medical community.