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.