Adelaide, South Australia
“You are the sky. Everything else – it’s just the weather.” ― Pema Chödrön
1.When did you start using topical steroids? And why?
I was treated with steroid cream from infancy for atopic eczema.
2. What was the name of the topical steroid?
My mum thinks the first steroid cream was called Celestone.
3. Were you ever prescribed more potent steroids?
Yes. All kinds. All strengths. For eczema.
As a young child I had severe eczema and was prescribed mild to strong steroid creams and ointments for different parts of my body. I think from around the age of twelve, I started using it on my face as I’d developed eczema there as well. Mostly around my eyes and mouth at that point. By the time I was a young adult I used steroid creams and ointments on and off, of varying potencies. On my face and different parts of my body. By this time I knew steroids were not a great option long term and endeavoured to use them sparingly.
I tried all manner of things for managing my eczema naturally (without steroids), via nutrition, supplements, lifestyle, natural creams/potions etc…. but my skin would eventually become completely unmanageable after a few mths if not before. I would need to use steroids again to control my eczema, so that I was able to sleep, work, care for my children and function properly. They suppressed it, it worked temporarily/superficially, that is, until it didn’t. Such a vicious cycle.
4. How did you find out about RSS?
I typed into my computer something like: red, burning, severely itchy skin… and eventually stumbled onto ITSAN.
5. What made you feel you had RSS?
I was desperate to find out what was happening with my skin, it was not like the eczema of my past (though that was no walk in the park, this was much worse). It was often red, itching and burning. It didn’t matter how great my diet was or what else I tried, it kept getting worse and spreading to areas I’d never had eczema before. My asthma and hayfever were super bad on top of it. I’d always been an allergy prone person but I seemed to be allergic to everything! I was getting nowhere with the dermatologist I’d been seeing, except sicker and sicker. My skin was so unmanageable, it was affecting every facet of my life! He had me back on steroids telling me I had eczema urticaria and said, ‘Many people have to manage it with steroids the best they can the rest of their life, you’re not the only one!’ (I think this was meant to be comforting??). He put me on an immunosuppressant drug used for cancer and transplant recipients, which is what they give people with very bad skin conditions too I discovered but I agreed as was desperate.
My immune system was at such a low ebb, I felt so sick and run down and I had skin that was red, burning and incessantly itchy most of the day/night.
I indeed wanted relief but I didn’t want to be taking these drugs for the rest of my life, especially when I seemed to be getting progressively worse, not better!!
There had to be a better answer.
I was in such despair. I started googling my symptoms, things like ‘burning, red skin/ hives/ rash spreading to new areas/ relentless itching/ palpitations/ severe anxiety/ no sleep etc’ and found other people who described EXACTLY what I was experiencing and going through, the common thread having been the use of topical steroids.
Then I stumbled across ITSAN which was such a relief.
I had finally found a site and support group (so many people going through exactly the same thing as me!) that talked about Red Skin Syndrome. The site linked many studies and medical publications about how Topical steroids can cause this condition in the body …..and people were finding a way to overcome it!!
Stop using them!! Ha, sounds easy right? Not so. If it were easy to stop them, I guess there wouldn’t be so many using them. Hardest thing I’ve ever done!! Also the best thing I’ve ever done!!
6. Were you diagnosed by a doctor? Did you have a supportive doctor?
No I wasn’t but my gp had seen me get progressively worse over time. When I told her that I believed it to be the steroids promoting the condition and shared info from ITSAN and others experiences with her, she found it to be very plausible, though she had never seen anybody else that was in the state I was in personally. She’s an Integrative Medicine GP so she was very supportive in monitoring me, etc. I don’t know what I would have done without her in those first 12 months, for moral support alone!
I had a great naturopath as well. Very lucky in this respect.
7. What were your first symptoms?
Spreading rashes, hives, red skin, burning sensation, crazy itchiness, sore eyes, poor sleep, heart palpitations, anxiety, depression.
8. Is your family supportive? Friends?
Yes, I’m so grateful to those who were/are.
I fell out of touch with many people though (or they with me). Mostly because I could no longer go out and socialise for quite a long time. It’s a very isolating experience in that sense.
9. Have you ever been to a hospital for this?
In the early weeks of tsw, I was in a very severe state and had come up on the waiting list with the Dermatology Dept at the hospital.
After my previous experience with the dermatologist I wasn’t sure about going but was in such a bad way, thought I should keep the appointment because at that particular point, I felt like I was close to dying, no kidding! I had no idea how, or if the body could cope with this for much longer. Complete head to toe, burning, red, oozing and tremendous oedema. My face and entire body was filled with fluid and leaking it out everywhere at the same time. Nobody who knew me would have recognized me, I barely recognized myself. I walked in, in a knee length cotton night singlet, which was agony in itself. At home I couldn’t wear anything it was so painful. I looked like a maniac, itching insanely everywhere. The nurse at the counter got a cold, wet sheet and threw it over me, it was heaven for counteracting the heat in my body. By the time I was called in to see the dermatologist, I was shivering like crazy. I tried to explain that I had been reacting badly to steroid treatment and had ceased using any creams in the last few weeks.
They deemed me ‘critical’ and that I should be admitted immediately! I asked how they would treat me if this happened and they said with steroid wet wraps and oral cortisone. I said that steroids were responsible for what had gotten me into this mess and so that was not an option really.
They basically said, ‘Oh well, if that’s not what you want we can’t help you today… but how do you think you will manage this by yourself at home’. I was gobsmacked, I thought they may have been able to provide some help or checking of vitals etc to make sure they weren’t sending me on my way if they were deeming me ‘critical’!
I said, ‘I don’t know, I guess I’ll go to my gp and get her to monitor me, make sure there is no infection, or something..’, to which they responded, ‘oh, your gp won’t be able to do anything for this’.
If you don’t want to be steroid tempted, hospital is not the place to go. I walked out and went home. It was truly the hardest yet best thing I could have ever done for myself.
10. What has been the hardest part of this condition?
The debilitating and painful nature of it, the fact that it unpredictably effects not only the skin but many aspects of the body’s internal and systemic functions. The continuous lack of sleep. The fact that it takes an undetermined length of time to recover from. Hmm, I guess there have been a few hard parts.
11. How long have you been in withdrawal?
I’ve been in withdrawal since February 2014, so 33mths so far.
12. What do you use as comfort measures during this?
Tsw support groups have brought much comfort along the way.
Baths with Epsom and ACV (apple cider vinegar), icepacks, pressure bandaging, soft cotton clothes and bedding.
Sudocrem and Robertson’s skin repair ointment.
Meditation and drawing.
Many things but these are the staples.
13. Are you employed? Has this affected your job status?
I have been unemployed throughout tsw. Was unable to work and fortunate to be able to take time to repair my body. Have been doing some volunteer work but am only just recently beginning to seek work again. It’s been a financial drain of the highest order.
14. Have you gone to therapy/wish to go to therapy because of this condition?
Yes, I went to see a psychologist over the first 2 yrs. I found it to be really helpful in keeping me sane. Fortunately for me, he was very interested in nutrition and health, had a good comprehension of the impact prescriptive drugs can have on effecting body chemistry, health and well-being. It was an incredible support at a time when I really needed it, he provided good counselling space for me. He also used hypnotherapy in some sessions to help with pain and itch management. It made a dent.
15. If there is one thing you could say to another sufferer, what would it be?
The intensity subsides.
Time and perseverance definitely has its’ rewards, IT DOES GET BETTER!
Trust that your body has incredible ability to right itself.
Tsw is a lesson in loving patience, with oneself.
That was more like four!
Caroline, thank you! Such an in-depth interview!