From the release:
Using mild over-the-counter hydro-cortisone creams to a range of prescription steroid creams, one's skin can become addicted in less than two weeks of usage and develop worsening symptoms that appear to the [sic] be simply spreading Eczema. However the problem is worsening from the medication.Press releases usually contain news. So what is news here? The release was published by a 501 (c) (3) nonprofit called “The International Topical Steroid Addiction Network,” founded by a dermatologist, Marvin Rapaport, and Kelly Palace, a former patient of Rapaport's. Rapaport practices in Beverly Hills, California.
It's not news that strong steroids are bad for you. But I hadn’t heard of the phenomenon described by ITSAN before. As I always do when I hear of unfamiliar scientific or medical concepts, I turned to PubMed, the NIH’s database of published papers. I performed searches for "topical steroid addiction," "corticosteroid addiction," and "steroid addiction." In my experience, well-established concepts leap out of PubMed with thousands of hits.
Topical steroid addiction just barely surfaced above the noise at first. It’s hard to find, but it’s there—in three papers by Rapaport.
But then, as I dug around, more results began to appear. The problem is that the papers all use different words to describe the central condition, which (on the face at least) is most precisely labeled “steroid-induced rosacealike dermatitis,” commonly called “red skin syndrome.” A review for practicing physicians can be found here.
The first case of red skin syndrome was reported in 1957. So “topical steroid addiction,” as described by ITSAN, is a real, if not new, condition. I don’t know how many patients it affects, but according to some PubMed results I found, it is well-known in India and China, where it may be emerging because stronger steroids are now being more widely prescribed--and perhaps more casually used.
In my opinion ITSAN’s site is garish and alarmist (do they really need that banner image of a crying girl?) and their focus on Rapaport comes across as promotional. In the "About Us" section, they ask:
Could the reason for this huge increase [in the incidence of eczema in the West over the past 30 years] be the use of topical steroids causing Steroid Induced (spreading) Eczema, an iatrogenic (adj.where a medical treatment causes a condition) skin disease?In a word: no. But the information on the FAQ section of their site looks useful. If you think topical steroids are your biggest problem, then why not stop cold turkey and see if you experience the flareup and cooldown that seem to be typical of addiction?
Great post. I noticed the large amount of press around this "issue" suddenly and based on personal experience, I wondered if it was just hype over a made-up condition (I've used varying strengths of topical corticosteroids on and off for my entire life and never experienced anything like this). The site seemed rather silly and unprofessional and I found the use of the term "addiction" to be problematic. True addiction often includes a mental addiction, which isn't the same with a topical cream the way it would be with a narcotic. So, taking a break is a easy way to address the perceived issue. It does seem rather alarmist and it's unfortunate that they're taking advantage of the existing misconceptions about topical steroids to collect funds.
ReplyDeleteGiven the Hell that people go through, I would not call this condition "hyped" - if anything, I would say ITSAN is understated. What is missing on the crying girl's face are crusty scales flaking off of horribly thickened, red, painful, and insanely itchy skin. The relentless itchy torment can, and does, deprive people of sleep. Imagine being the parent of a child who screams in torment - for months - because the relentless itch that worsened and became unbearable on steroids just won't stop. That is, it won't stop until the steroids are removed and the skin can finally heal itself.
DeleteMake no mistake, for the skin this is an addiction. And, like any other intense addiction, coming out of it is Hell.
My dermatologist, who spent many years studying atopic dermatitis at the NIH and who is a professor at the local medical school used the term "addicted to steroids" to describe my condition. He has no affiliation with or even knowledge of ITSAN. When I told him I had only used the topical steroids for about two months, he said that was "plenty" of time to develop an "addiction."
DeleteI think you nailed it!
ReplyDeleteThanks for the articles and research. I stopped the steroid creams beack in novemeber and am now entering my 9th month of withdrawal. I am almost healed. You can see my photos on my blog at www.topicalsteroidwithdrawal.blogspot.uk
ReplyDeleteI agree that this condition is "hidden" due to the fact that the medical establishment can't seem to agree on a name for it! in my research I found about 10 different names, including: topical steroid induced rosacealike dermatitis, red face syndrome, steroid rosacea and so on. it makes it hard to search and find articles on the subject.
The reason the condition is prevalent in India is due to the unregulated use of steroid creams as skin lighteners. Many potent creams can be bought OTC.
It is important to differentiate RSS from normal eczema, although many with RSS originally had eczema, which is why they started steroids in the first place. Like you say, not everyone who uses steroid cream will end up addicted, but I think that the problem is more commonplace than you think. Current estimates are that about 20% of regular steroid cream users get addicted.
I disagree with the comments made by atopic girl. If you have ever seen photos of people going through steroid withdrawal, you would understand the reason for the hype and alarm. The rash of withdrawal is a lot more severe than eczema. It burns and in some cases can even be life threatening (a 16 year old girl in the US was admitted to a burn unit and Dr Albert Kligman reported the death of a child in 1975 due to abrupt cessation of steroid creams).
Itsan are not scammers or money grabbers. How can telling people to stop using something generate any cash for them? The site may not be the greatest visually,they are not professional web designers, but these people are passionate about their subject. I also disagree with the comments about Dr Rapaport. The site references him because he has written extensively on the subject. As for myself, I live in the UK and have never met or spoken to the man.
You make a good point about stoping steroids to see whether you get rebound. it is the easiest way to see if your skin is addicted. Rebound usually occurs within a week of stopping the steroid creams and is characterised by a red burning rash.
My wife is currently suffering from this condition and there is nothing in the least exaggerated on the ITSAN site. If anything, it's worse than described. As for Dr. Rapoport: a) she contacted him by e-mail, he answered promptly with useful information and did not suggest she come to see him or in any way set up a doctor patient relationship with him b) he shares new information for free on the website, whether it's tried and successful or only a possible new option. Nowhere does he ask or even suggest that he be paid.
ReplyDeleteAtopic girl, firstly I am not knocking you but you need to understand the condition before you can make any judgememts.
ReplyDeleteAgain ITSAS is only collecting funds to help with the cause - they are not collecting any profits. Yes you are right that using steroids will not have a lasting effect on everyone - this only affects a small population of people who have an atopic predisposition, if you had eczema to begin with and were prescribed steroids to help with it. I never had eczema in my life until 3 years ago - I was prescribed a strong steroid cream to keep a rash under control behind my legs - as time went by this slowly spread all over and I had to keep using the creams, upon cessation my entire body would turn red but resuming the creams but get rid of it, when you say addiction is a 'problematic' word I beg to differ, when I used to be on my last tube of cream and my next appointment with the derm was not for another week or another month I would panic as I knew the all over rash would be back if I did not get a refill quick - I would squeeze the tube dry just to get the last drop out- if that does not sound like addiction to you then I dont know what is - most of the people in this predicament have dealt with this exact issue, our group only started with a handful of people when this was first discovered by Kelly, this condition now coming to light has brought so many more people who are going through the same condition after cessation of steroids, this is no joke, its a living nightmare and I would not wish this withdrawal process on anyone - it can takes months if not even years for the body and skin to regulate itself back to normal after cessation, the girl crying on the cover of ITSAN is a good representation of what all of us are enduring - you really cant imagine what people are going through with topical steroid addiction and withdrawal - this includes youung children who have been slathered in steroids by their GP's for years and so many of them now are healed after cessation - we have proof that this is heals, people have blogs with pictures and progress that is prooves this -its a rough path during witdrawal but its all real - sorry to sound harsh but this really is no joke.
That picture of the crying girl is accurate... I've cried enough tears to know what I am talking about.
ReplyDeleteFor a person like myself, who never had eczema, who (after much thought and research) realized that I had a nickel allergy that was treated with topical steroids and in less than a month, I had massive red skin outbreak all over my body. At the time, I didn't know I had a nickel allergy and no doc seem to pick up on that.
Recently, the all nickel wound was acting up and went back to the topical steroids and BOOM, red all over again. I believe some people are super sensitive to steroids and I believe it is a lot more that is currently known. No matter if it is "corticosteroid addiction" or "corticosteroid sensitivity" doesn't matter... Either way, it's hell and for me, it's been debilitating.
All I have to say to the poster of this article and "Atopic Girl" is, I hope you never get it! It's a terrible condition. Also, FYI, addiction doesn't just manifest mentally, but physically too, totally wrong info. by Atopic Girl.
ReplyDeletei can assure you my son is going through topical steroid addiction and it is hell!! if u would like to see his story here is his blog. It is as bad a that little girl screaming on itsan web site!!!!! http://klinestopicalsteroidhell.blogspot.com/
ReplyDeleteI used topical steroids for 2 months under the supervision of a MD and what I experienced after stopping the steroids has been absolutely horrible, and months later now I have seen very little improvement. I really don't understand how someone can say that going through topical steroid withdrawal is "over-hyped", when the pictures and detailed experiences paint a drastically different picture. And you're right that this isn't recognized as a legitimate condition simply because the symptoms of RSS appear to be similar to eczema, or dermatitis, and the first thing doctors want to prescribe are steroids. I also think that doctors are very reluctant to diagnosis RSS because if they do they create liability issues for themselves. Think about it, if a doctor diagnoses a condition caused from medications they over-prescribed, doesn't that make them at least partially responsible? And one of the goals of ITSAN is to have warning labels placed on all steroid packages, something I am personally all for.
ReplyDeleteI have been using steroid creams for 20 years and they stopped working, I coincidentally had a girlfriend recommend Dr. Rappaport (she sees him for acne) and for the first time since I was 13, he told me I had steroid addiction.
ReplyDeleteI am off the creams and have been feeling anxiety and worse eczema than ever with some good days here and there, overall it is getting better but spreading. This is the cycle and I am going to stick with it.
I had no idea Dr. Rappoport was associated with ITSAN, he never mentioned it, never told me to use it as a resource. Steroid withdrawl is different for everyone and after 3 months of terrible "allergies" I am a believer that the steroids have seriously affected my skin and as a result I am hypersensitive to things that never affected me before, gluten, dairy, processed foods, alcohol...after reading enough entries on support groups I now know what I am dealing with. Thanks to all those people who posted and good luck to all those recooperating.
These articles and blogs are truly enough for me for a day.
ReplyDeleteDermatologist Marietta
"Hey, love the blog. I think this post is well worth revisiting; ITSAN have a new logo and hundreds more members now (but, sadly, still very little funding to get the word out). I feel this is an especially relevant time given that the NEA are not only getting further involved with steroid manufacturers (http://www.prnewswire.com/news-releases/upsher-smith-joins-the-national-eczema-association-to-take-action-during-eczema-awareness-month-170971971.html) and (imo) thus clouding their unbiased stance on the use of topical steroids, but also censoring the comments of Red Skin Syndrome sufferers in their forums. I would be interested to hear your thoughts. Thanks"
ReplyDeleteI'm not convinced that steroid are harmless, and even less convinced that it's been given a serious look at in this article. Beyond the alarmist impression of the ITSAN group, there's been serious evidence that steroid addiction/ dependency and steroid-induced eczema is a legitimate condition based on Dr. M. Fukaya's and Dr. M. Rapaport's studies. I think that should require little more than a glance at a single website.
ReplyDeleteBTW I don't know the author but I think that when people suffer from something for a long time, and possibly find something that works.. they consider contradiction "alarmist" because they have had no effects on them or anyone they know personally.
DeleteJust my opinion, and I have had my fair share of steroids, and don't like taking them at all
I know from personal experience that this ain't hype. In 1996 my wife spent 2 1/2 months in the hospital essentially detoxing after the steroids she had used for years stopped working. She was barely urinating and, meanwhile, had developed a rash all over her body -- her symptoms were very similar to photos on Dr. Rapaport's website. She was so sick, I didn't think she was going to make it. In Japan they call it a 'rebound', and its a well known side-effect of prolonged steroid use among a sub-population of sufferers. My wife convalesced at a special unit of the hospital set up expressly to treat 'datsu-sute' patients going through this syndrome--which is to say, units like this are fairly common in Japan, especially in the Western region of the country. Meanwhile, there are also outpatient clinics that cater specifically to folks trying to manage their disease w/o the use of steroids: the famous one in Tokyo is Fujisawa, which is where my wife goes. My skepticism is in the direction of the medical-industrial complex. Big Pharma is a business, and scientists aren't above conflicts of interest. There's obviously a lot of variability among the population of eczema suffers: I listened to a talk by a doctor from Ohio the other day and and he identified three pathogenic profiles, one which he termed 'airborne' ... anyway, Dr. Rapaport is on to something.
ReplyDeleteThanks for your comment. Would you happen to have a web reference for this clinic in Fujisawa? I searched for it but couldn't find anything. I am trying to find out where the leading centers are in Japan so I can add them to the Eczema Map Project.
ReplyDeleteHi I was reading your blog because I seem to have eczema that is not going away on my elbow, while my hands are clear.
ReplyDeleteI was diagnosed maybe 3 years ago at age 28 and told most likely due to severe stress.
I also have another condition that required oral steroids once in awhile, and injections (epidural).
My GP gave me a steroid cream that my dermatologist disagreed with, and gave me a stronger one, which worked on my hands in 3 days. Basically his opinion was that the GP gave me something very weak that would be used long term, but this cream only for a max of one week. I have not had any reactions, but my sympathy with anyone who did or suffers.
Maybe a good word would be "dependence" not addiction. In narcotic medication, muscle relaxers etc someone can be physically dependant and go through withdrawal but not addicted, which is more mental (and usually means consuming more than prescribed)
Some people on here mention rebound effects, and this is common with some pain syndromes, where certain meds (Vicodin, Norco esp) cause rebound pain and have nerves almost flare even when the pain is totally gone.
Good luck to everyone facing this conditions, and I love the blog!
Eve