Red Skin Syndrome: Corticosteroid Addiction & Withdrawal by Dr Marvin Rapaport
The term "Red Skin Syndrome" was coined by Dr Marvin Rapaport MD
Dr Marvin Rapaport found that overuse of topical steroid creams can cause nasty side effects when withdrawn. Common symptoms include weeping, burning skin when a steroid cream is discontinued. In many cases, overuse of potent steroid creams causes the skin to enter a cycle of addiction, with doctors prescribing more potent steroids to treat the worsening skin condition, a never ending cycle.
WHAT IS THE CONNECTION BETWEEN INCURABLE SPREADING ECZEMA AND TOPICAL STEROID USE?
It’s a common question and totally understandable. “How can you say Rapaport that this is steroids when it looks like eczema?” say the doctors, say the patients.
The best I can come up with as a logical explanation is that the natural history of eczema is that it burns out by the teenage years in 99% or more – period.
“Wait a second,” says the dermatologist now. “I see tons of people who have bad eczema.” I’m saying they’re not Eczema people. They’re steroid people – steroid addicted people.
“Well, how do you know that?” Because before the advent of the super potent topical corticosteroids was that it burned out. You, young doctor, between one to thirty years in practice, have only seen the worst eczematous-like patients, who have been on steroids of a very long period of time. You’ve never seen a pure eczema patient in your life, so you cannot fathom that this is indeed the same – it’s not, it’s different.
And then the best I can say is, in cooperation, is there is scientific evidence when you look at the patient. Their blood vessels dilate. They’re red with maybe a little patch of eczema, maybe not. Well, eczema doesn’t dilate blood vessels, but these atopic individuals do. Steroids love to close vessels down, and then they rebound and open up. And they’re burning and itching and hurting all over – and they put more [steroids] on, or they take pills to calm it down.
And the scientific proof is in the testing in the pre-marketing company arena. You put a certain amount [of steroids] on the forearm, you tape it – I forget how it’s done exactly – you come back a half hour later and you look for a whitening effect and you measure of the distance of the whitening effect because steroids closes vessels down and it whitens. The weak ones whiten for half an inch, the strong ones whiten for two inches. That’s why they’re called “strong” and the others “weak.”
So the same thing that identifies the strength of a steroid is happening to the patients on a daily basis with this endless over usage.
WHEN AND HOW DID YOU DISCOVER TOPICAL STEROID ADDICTION?
I ran a clinic in UCLA years ago. It was called “The Contact Dermatitis Clinic” and “Photo Dermatitis Clinic.”
I was interested in sunlight problems and allergies. We saw referrals from all over southern California with worsening or non-healing eczematous rashes, especially on the face. And we were asked to evaluate them. We did patch testing, we did biopsies, we did blood tests and we came up with nothing. And all I could get – the only positive I could get was the history – it was always the same. A little eyelid rash and then after applying steroids there after a year, the whole face is involved, they’ve ran out of the cream and it’s spread to upper chest, etc. And I said, “Oh, it’s the therapy probably” because there’s nothing else to explain why they have ongoing problems. We did light testing to see if they’re allergic, if they have lupus. Nothing ever, ever, ever, ever. So it was the steroids. Very hard sell to the referring doc. Your therapies, sir, are causing the problem. Stop the therapy, patient will get better. “No.” Very hard to understand, very difficult. But finally, after more patients, more papers, more lectures, the word got out. And there were some who believed. And most recently, the patients in the last 10 years found the papers on the internet and started bugging their doctors or coming to see me. And by now, I’ve seen 2,000 patients – all the same. Same history, same look, same everything. And by now, the vast majority are cured.
It’s been enough time and I’m sorry to say it takes a long time to cure them – months to years. No special therapy, no, and they’re perfectly normal after the cure sets in. They never see me again, they never see another doctor for this. It’s over with.
(5:09) WHAT ARE THE TOP SYMPTOMS TO KNOW WHETHER YOU HAVE ECZEMA VERSUS TOPICAL STEROID ADDICTION?
Well, eczema people itch. eczema people itch fiercely and they get a little bit of redness.
The steroid addicted people burn. They are on fire.
Eczema people are never on fire, never burn. The burning is because the vessels dilate and it causes a burning sensation. To me, that’s the tip-off instantly, almost. Without even pursuing it further with history.
HOW MUCH STEROID USE DOES IT TAKE TO CAUSE TOPICAL STEROID ADDICTION?
Weeks to months – but if you’re using the super potent steroids, it can be a very short period of time. Just weeks. Certain locations suck in the steroid more and their vessels react faster, like the eyelids, the groin, the armpits… So they get into trouble more readily.
(6:08) HOW DO I STOP MY ADDICTION TO TOPICAL STEROIDS?
In many situations, long-term steroid usage in Lupus people, in Rheumatoid Arthritis people, or other problems – the doctors in their wisdom will taper the patients down for fear that the Adrenal Gland won’t kick in. Those are oral steroids, systemic steroids.
With these patients – because it’s a vascular problem, every time you try to taper it down, they just flare on you again. Give ‘em a weaker one, take a little bit away from them, give it every other day. They start flaring. So it dawned on me years ago, cold turkey is the way to go. It’s the only way. And as they go through the hell, we hold there hand through it and finally, there’s a break. They do okay.
(6:56) WHAT IS THE CURE FOR TOPICAL STEROID ADDICTION?
Total cessation. It’s like any other addiction. How do you treat the morphine addict? You cold turkey him. And for a year, he’s got seizures, he’s nervous, he’s anxious, he fiddles, he has tremors. You treat those side effects.
(7:17) DOES EVERYONE REALLY BECOME CURED OVER TIME?
Absolutely – across the board.
(7:21) DOES THE ECZEMA COME BACK ONCE IT HAS BEEN CURED?
You might itch on the leg in the wintertime, you might get a rash, so you treat it with creams and lubrication. And usually that’s sufficient without running to the steroids right away.
I have tried with some people, tried steroids – five to ten years later – on the leg, when they had a facial rash and I’ve gotten away with it 50% of the time. The other 50% -- they clear and the next week they rebound locally and I say “No more steroids.”
(7:57) WHAT ARE THE MOST TYPICAL SYMPTOMS OF TOPICAL STEROID WITHDRAWAL?
Well, initially… Let’s talk about the worst patients ‘cause they exemplify all these symptoms. The worst – because the vessels open up, they pour fluid out, so they get swollen and edematous. They can have a swollen face, like a cantaloupe. And when finally the Edema is absorbed four to five months later, they look at themselves and say, “I’ve lost weight.” It was all fluid. The vessels open up and pour fluid outside of the skin, so they ooze, they get wet. And again with the wrong doctor, the wrong diagnosis, they think it’s infected when it’s not. It’s just pure, normal fluid just dried up. We have a few tricks to dry it up.
(8:46) WHEN THE SKIN IS ITCHING AND BURNING DURING WITHDRAWAL, DOES THAT MEAN I HAVE AN INFECTION?
Rarely, rarely, rarely. We watch. But everything red, everything ooze is not infection. In taking the history of all the people that finally get here – all of them – have been put on Antibiotics if they ooze a little bit or they get a little red. Everyone across the board. You say to them, “Did you get better?” “No.” No.
(9:13) CAN A PATIENT USE ANY TYPE OF TOPICAL STEROID EITHER OVER-THE-COUNTER, OR FROM THE DOCTOR, TO HELP WITH THE WITHDRAWAL SYMPTOMS?
It’s all or nothing. Can’t, cannot. It just instigates the problem all over again. I’ve done it with people who have cured. Give me five… ten years. Get… let’s see. Because the experience is that they rebound. I don’t want them to go through a problem again.
(9:39) WHAT IF A PATIENT IS USING ANOTHER TYPE OF STEROID TO TREAT AN ILLNESS SUCH AS ASTHMA?
Well, all steroids are probably cumulative, but if you need an inhaler to live, we’ll cross that bridge. If you have a bad knee and they want to give you a shot – if you don’t really need it, I’d like to talk to the orthopod and I’m not doing it. If it’s really necessary, we do it and we live with a flare. If you flare don’t worry about it.
(10:06) WHAT RECOMMENDATIONS DO YOU HAVE TO MAKE THE TOPICAL STEROID WITHDRAWAL GO MORE SMOOTHLY?
Well, if they’re really terrible and covered head to toe, I use the immunosuppressive drug Cyclosporin. We have people I just push in the bathtub for days on end just to cool that skin down. Some people who are horrible have to drop out of school or work. The vast majority are able to function and we support them. The panic they’ve gone through with all the other docs, I try to allay that with talk – telephone, email, visits – because they worried. They’re always worried. I say, ”I’ve seen it. Don’t worry about it. It’ll be down in two days.” And when I’m right, they go along with what I say for the next time. But it’s the personality of the patient and the premorbid personality.
WHAT MOISTURIZERS DO YOU RECOMMEND TO YOUR PATIENTS WHILE THEY ARE GOING THROUGH WITHDRAWAL?
I always ask the patient what they like. Usually they’ll tell me they like Aveeno or Curel or something. I say, “If it’s not causing any trouble, do it.” I like a couple ones here that we’ve brought on board. They’re different. They imply a little different approach than something over-the-counter or at the drugstore. And so far no one’s been bothered. We use something called Egyptian Magic and one called Preen and they’re very effective and safe.
(11:35) MANY PATIENTS EXPERIENCE A VERY INTENSE ITCH DURING THE WITHDRAWAL. WHAT CAUSES THAT SPECIFIC TYPE OF ITCH?
Eczema itches. The burning is on a neurological basis probably. It’s dilated blood vessels in the small little nerves in the skin that are reacting, and itching is carried by the small little nerves in the skin. So, one kicks off the other. The redness can be gone and they’re fiercely itching still, but the itching will stop. You can be fiercely red and no itching. You can be fiercely red and itching. All parameters are evidence. But sooner or later, they all go away. And we get them to sleep with a sleeping pill, we give them anti-itch pills, we have anti-burning pills called Neurontin, we have anti-anxiety medicine, we have me talking on the telephone giving support or therapy. Those are the therapies that work.
(12:41) WHY WILL A PATIENT EXPERIENCE WITHDRAWAL SYMPTOMS ON OTHER PARTS OF THEIR BODY WHERE THEY NEVER APPLIED THE TOPICAL STEROIDS IN THE FIRST PLACE?
The steroids were absorbed through the body. That’s why – let’s just say that the first patients we wrote the paper about had eyelid rashes. I wrote up a hundred eyelid dermatitis patients. I have pictures. When they cease the steroids – down to their upper chest. How the heck could steroids being rubbed on the eyes could cause a problem down here? It does. The steroids are absorbed and affect the vessels within six feet—six inches, twelve inches. So patients don’t remember and if patients have been putting on steroids for 20 years. “Did you ever put them on your right ankle?” “No.” “Well, how do you remember?” But it’s really the absorption of the body that goes all over the place.