Comments on corticosteroid addiction?

Ask our experts your questions about all aspects of eczema and dry skin.

Moderator: talkhealth

Locked
4 posts
Miss Kitty Fantastico
Posts: 13
Joined: Fri Mar 29, 2013 8:09 pm
Location: Shrewsbury, UK
Quote

by Miss Kitty Fantastico on Mon Sep 23, 2013 1:01 pm

Comments on corticosteroid addiction?

Hi,

I have been misdiagnosed with severe, full-body and face, chronic and out of control eczema for all of my 30 years. I was actually suffering from an addiction to topically applied corticosteroids and have been successfully withdrawing to reveal lovely clear soft skin. I am obviously now very keen to help avoid others ending up in my original situation. My condition is largely unheard of amongst the medical community, hotly debated by eczema-sufferers and addicts, generally under-represented and often misunderstood by doctors and patients alike.

[I’m not referring to steroid phobia, the rebound effect, adrenal suppression, atrophy, contact allergy to an ingredient in the steroid base or any of the other well-documented, rare potential side effects of steroid use in treating eczema. I’d like to please stick to the subject of specifically corticosteroid addiction as originally defined and documented by Dr Marvin Rapaport]

Given the horrendous nature of life before and during withdrawal and the possible scale of the problem, something clearly needs to holistically change in the way we view eczema treatment. In particular I feel there needs to be a more common appreciation of differentiating between eczema and addiction in the first place, and more readily-available medical support for those already addicted or withdrawing.

I would be very grateful if any of the experts can take the time to offer their opinion (positive or negative) on the matter as I am genuinely stumped as to why this topic is not more widely known or discussed in the medical or eczema world. I would welcome any advice as to how our small but growing community can better represent and promote our cause.

Thank you kindly for any comments.

i-have-eczema
Posts: 1
Joined: Mon Sep 23, 2013 1:12 pm
Quote

by i-have-eczema on Mon Sep 23, 2013 1:44 pm

Re: Comments on corticosteroid addiction?

I too feel that the list of symptoms described by Dr Rapaport match what I have been going through. Eczema was never really an issue for me until I went through a stressful period. I was prescribed topical steroids prior to this time to help the small affected areas of my face but when I entered the period of stress I was told by my GP to use the creams as and when I felt I needed them. Over the course of a month my skin got so bad that I was referred to a dermatologist. We tried so, so many different treatments but nothing seemed to work. Now, 4 and a half years later, after having taken many different types of immunosuppressants and all treatments available I am no better and my body is now so damaged that I am catching recurring viral and bacterial infections on a frequent basis.

I stopped using the steroid creams in May this year after having read about the phenomena of Red Skin Syndrome due to corticosteroid addiction which certainly matched my symptoms. I then later also stopped the immunosuppressants as I couldn't deal with the constant infections - we're talking at a rate of week-on, week-off! I haven't been taken too kindly by any of the dermatologists at my hospital as they don't seem to believe in the condition, however there is just too much evidence based on real people's blogs who have overcome their so called "eczema" after a period of time in not using the topical steroids.

I too would love to know why this condition isn't more recognised in the professional medical world as I feel more research should be carried out.

Miss Kitty Fantastico
Posts: 13
Joined: Fri Mar 29, 2013 8:09 pm
Location: Shrewsbury, UK
Quote

by Miss Kitty Fantastico on Mon Sep 23, 2013 9:16 pm

Re: Comments on corticosteroid addiction?

Ooh hey i-have-eczema! I love your blog. Thanks for commenting : )

I forgot to say... the first response to mention pimecrolimus/tacrolimus, stepping down through the potencies as a response to the rebound effect (and thus ignoring the cumulative effect of repeated steroid applications), light therapy, elimination diets or wet wrapping gets a wedgie!

I spend a lot of time offering support in eczema forums and the people who ask for help are at their wits end; they have tried everything and their skin keeps getting worse. I appreciate that steroid phobia and the under-treatment of eczema (especially in infants) is a problem, but corticosteroid addiction is also a problem. In my opinion it is worth finding out just how big a problem as the first port of call.

Topical-Atopic
Posts: 1
Joined: Tue Sep 24, 2013 11:40 am
Quote

by Topical-Atopic on Tue Sep 24, 2013 1:10 pm

Re: Comments on corticosteroid addiction?

Hi there!

I just want to add my experiences with topical steroids and withdrawal. I'm 44, typical atopic and have suffered with eczema since childhood. I used topical steroids on my skin for approximately 30 years, possibly longer. When I was a teenager I remember being able to use normal cosmetics - make up, moisturisers, foundation, shampoo. I was a teenager in the eighties, so elaborate face paint was part of my life - I wanted to look like Toyah wilcox and David Bowie's love child.. :D The only thing I had to watch for was lanolin, as I have always been sensitive to it. Over time I found myself becoming increasingly sensitive to cosmetics, shampoo, moisturisers, - anything I put on my skin other than steroid creams would cause a rash and a reaction. I tried lots of eczema cures, nothing worked, most seemed to make it worse, and I always ended up returning to the steroids.
By my late twenties I was unable to use make up, and for the last ten years or so the only creams I could put on my face were mild steroids. I ended up using them every day, in place of moisturiser. Elsewhere I used medium to high potency steroids to keep the eczema at bay. My skin was becoming more and more steroid damaged, and more and more sensitive. I reached the stage where I could not go out in the rain without my face stinging and burning. I had patch tests, they came back negative for allergies. I was told that I just had extremely sensitive skin, but wasn't actually allergic to anything. My GP and my dermatologist told me that I had to accept that my extreme sensitivity and eczema was a lifelong condition, and I became resigned to it.
Two years ago, my GP told me I had to stop using steroid creams on my face or risk permanent skin damage. The skin on my cheeks had become tissue-paper thin and would coome away in flakes at the slightest touch. I panicked - how was I going to treat my eczema if I couldn't use steroids on my face? I searched online for steroid related skin problems, because I wanted to know how bad steroid damage could be. I found Dr. Rapaport's researxch papers on Kelly Palace's home page.
Suddenly everything I had been through for years with my skin made sense. I was reacting, not to the new products I was trying as cures, but because I had ceased the steroids in order to try them. It was an epiphany, of a sort. The more I read, the more convincedI became that giving up topical steroids was the answer to my skin problems. I got rid of every tube of steroid cream, in the house. I was somewhat shocked to find myself putting two carrier-bags full of the stuff in the bin.
My body's reaction to the abrupt cessation of steroids was horrendous. I thought I was prepared - I'd read as much as I could on the subject. I wasn't remotely prepared. My legs swelled, my eyelids, swelled, I burned and my skin became inflamed and oozed continuously. My hair fell out in handfuls. I couldn't control my temperature. I shivered uncontrollably, ten minutes later I'd be burning up. I had to change my clothes about four times a day because of the constant oozing. My legs were so swollen I couldn't stand up for more than a couple of seconds without pain. I became bed bound, and remained so for six months. I had wet wounds the entire length of my legs, on my face and on my hands. I lost weight.
Over time, things improved. Nine months after giving up steroids,my skin was perfect, and I enjoyed three months of 'normal' life. It was amazing. Almost exactly a year to the day I first gave them up, my second major flare kicked in. I became bed bound again, this time for four months - the symptoms weren't so severe. My skin cleared and I enjoyed another three months of relative normality. Then the third flare kicked in. This time I wasn't bed bound, but had to keep my feet up because of the wet wounds and swelling on my legs.
As I write this I am almost clear of skin problems. It is two years and one month since I stopped using topical steroids and my skin feels strong. It is incredible. The skin on my face looks like normal skin, it is no longer burning and red, and no longer flakes and comes off in tissue-paper thin strips. I expect to flare again - I used steroids for a very long time, but I know that I am through the worst of the rebound flares and withdrawal. I am starting to feel as though I can put my life back together, and even one day possibly use make up again. I will have a normal life without having to put my skin first, and that thought alone keeps me going through the rough times. Looking back, if someone had told me how ill I would become on ceasing the creams, I wouldn't have believed them. Now, I think topical steroids are poisonous, and should be used with extreme caution.
The problem is that most doctors aren't aware of the full symptoms of topical steroid withdrawal. Most doctors can only go by what they are taught - that steroids are perfectly safe if used correctly. They have never seen a patient go through topical steroid withdrawal because as soon as someone stops using them and their eczema flares, the usual recourse is a stronger steroid. Withdrawal begins, then stops because steroid is reapplied. In my experience it is extremely difficult to find a doctor or dermatologist who accepts that topical steroid addiction, withdrawal, etc. is likely to be part of the problem when dealing with long-term full body eczema. Every day I read about someone else going through exactly the same withdrawal as I did, presenting the same symptoms, even though they might be in another country, another continent. There are research papers going back to the early seventies on the harmful effects of topical steroids, so why don't doctors accept that this is a very real problem which potentially affects thousands of people across the globe?

Locked
4 posts