What is Red Skin Syndrome RSS?

Topical Steroid Side Effects

Question 1: What is Red Skin Syndrome (RSS) ?

Answer 1: RSS and Topical Steroid Addiction/Withdrawal (TSA) (TSW) are interchangeable.

Question 2: What is the difference between RSS and Topical Steroid Addiction?

Answer 2: There seems to be no difference. Just RSS gives a clearer, visual picture to the condition.

Question 3: Which one is medically accepted?

Answer 3: You may have to use the terms interchangeably to catch a doctor’s attention who may have only heard of one or the other. Save some of the websites and research papers published by these doctors so that you can share them with them and help spread awareness. Believe it or not, so many of them have not heard of these conditions yet.

Question 4: Are there legitimately published independent studies on RSS & TSA/W that I can share with my doctor(s) to convince them of what I’ve been going through? 

Answer 4: YES! Here are just a few:

CONCLUSIVE RESULTS from the International Eczema Consensus Statement above:

Sixty of 77 (79%) IEC members participated. Consensus was reached on 12 statements, including that systemic corticosteroids should generally be avoided, but can be used rarely for severe atopic dermatitis under certain circumstances, including a lack of other treatment options, as a bridge to other systemic therapies, or phototherapy, during acute flares in need of immediate relief, in anticipation of a major life event or in the most severe cases. If used, treatment should be limited to short-term. Most respondents agreed that systemic corticosteroids should never be used in children, but consensus was not reached on that statement. The conclusions of our expert group are limited by a dearth of high-quality published evidence.

So as you can see, we are just now exposing the tip of the iceberg. It’s melting, and we may witness the floodgates open up in our lifetime. Please share this book, and as the author, I’m giving you permission to share your copy to anyone in need and to disseminate this important information.

What is Topical Steroid Withdrawal TSW?

Topical Steroid Side Effects

Question 1: What is Topical Steroid Withdrawal?

Answer 1: Topical Steroid Withdrawal is the stage of consciously stopping, reducing, weaning off the medication(s) of corticosteroids. The pivot point is the day when steroids are stopped completely. At that point, the countdown begins. It may take a few days, weeks or months for the reaction of your endocrine system to communicate with you.

The reaction may be unnoticeable and you may be in the clear! Or the reaction could be an angry full body flareup with fevers, chills, and so many other symptoms. Each case is different and depends on prior usage and potency of the corticosteroids. The TSW warrior community refer to their withdrawal in timeframes of “2 years TSW” from the point of stopping steroids to that point of time currently they are in.

Another demarcation point is when the withdrawal symptoms subside to the point where life is back to some level of normal and recovery is considered good. Random flareups of eczema may or may not still occur. But the storm is over after the detoxing stages of corticosteroids purge from the body and the adrenals have rebalanced themselves.

Question 2: With so many symptoms to watch out for, how do I navigate through this journey?

Answer 2: First and foremost, work out a plan of action with your primary doctor. Hopefully, by now you’ve found one that does understand TSA/TSW/RSS and what to expect. I implore you to do this under medical supervision. Your immune system is everything and with a doctor you can begin a baseline of testing to measure where your cortisol production levels are at and go from there.

Ideally, a specialist in endocrinology is involved to pick up on the more subtle variations of testing.

Question 3: Timing is never good – so how do I know when to do this?

Answer 3: As you gather your information and resources, this would be the time to open your immediate support circle of family and friends. Reaching out and explaining the potential withdrawal process will help you make the decision based on everyone’s ability to support you. 

This critical decision could affect your ability to study, or earn income or be responsible for others. Until you test if, in fact, there is an addiction, you won’t know what to expect. So there are a lot of moving parts here that need to be worked through with your circle of family and friends and medical professionals.


Topical Steroid Side Effects

Question 1: My doctor told me to apply steroids and then wet wrap with plastic and then bandages to make the medicine go deeper while I sleep so that it works better. Is that okay?

Answer 1: NO!

Question 2: Why?

Answer 2:  In the United States there are 7 Classifications of Topical Steroids. Class 1 is the highest and most potent. Class 7 is the lightest like the hydrocortisone you can find over the counter in any drugstore.  Once your eczema falls into the vicious cycle of steroid rebound phenomenon and the adrenals get more and more angry, the eczema appears to be getting worse every time you try and stop. Doctors will continue to prescribe higher dosages. 

Once you reach Classification 1 and there is no sign of it getting better…Surprise! By that time, it’s been a few years that you’ve been on these meds and you’ve probably gone through a lot of tubes. There’s only one other option left for the doctor. 

Maximize the highest, most potent steroid by embalming it onto your skin with a mummy wrap of cellophane plastic wrap that does not breathe and could potentially cause sweating, moisture and therefore fungal breeding ground which is another nightmare.

But wait…there’s more…Your skin needs to breathe! This could cause a plethora of other problems, not to mention death, but on the lighter side, you are virtually dumping the highest potency of steroids in a condensed time period and giving your entire endocrine system a flooding natural disaster kind of Emergency Broadcast Signal that THIS IS IT! All systems Alert! WE ARE ON MASSIVE EMERGENCY STRESS MOTHERLOAD OF ALL DISASTERS!

If you’ve read through this book by now, you’ll know your adrenals are literally deep snoozing on their La-Z-Boy Chairs and they are not going to get back up come hell or high-water. The damage is done; they have officially taken a long leave of absence.  

The stress of wet-wrapping could cause so many other infections as well. Please reconsider your options. There are full body soaks you can do in the tub with mineral salts or apple-cider vinegar to get you through full body eczema flare-ups.  There are more intensive emollients like ELAJ that can all be found at www.ELAJnaturally.com.

Potency Levels

Topical Steroid Side Effects

Question 1: How do I know what potency of Topical Steroids I am getting?

Answer 1: Use this chart below as a reference guide. In the United States the Potency of Topical Steroids are classified into 7 Levels.

Question 2: What are the lowest and highest ones?

Answer 2: The lowest potency is Class 7 down at the bottom and that is typically the hydrocortisone you can purchase over the counter at any drugstore. The highest potency is Class 1. All classifications should be monitored and decided how much and for how long to use with a qualified and caring doctor. In addition please don’t disregard the insert that comes with your prescription.

Go online and look up that specific drug name in both generic and label names. Then go to www.PatientsLikeMe.com and review the outcomes and reactions and side effects from others that have gone down that road. Remember you are the captain of your ship.

Question 3: How do manufacturers ‘test’ the potency of steroids?

Answer 3: Surprisingly, it’s not based on receptor-mediated activity of steroids or how the body receives the steroids and/or reacts and adjusts to the new hormone coming in the body by self-modulating. Instead, the steroid is judged on how well it restricts capillary action in the area like blood flow and other important vascular functions. The steroid is measured on how well it has vasoconstriction abilities. The vasoconstriction testing system has been around since 1962 and is still rather unspecific and is a simple in vivo test which means on actual living beings. Conversely, in vitro means in a petri dish or outside the living organism. When a lab technician applies a specific amount of steroids, the skin area is monitored to quantify the slow down and velocity of fluid movement through sophisticated cameras such as infrared reflection photometry, thermal conductivity and/or laser Doppler velocimetry. 

What’s not surprising, is that after the body becomes used to vasoconstriction, the body can’t shake it off easily. Those capillary vessels feel limited and practically claustrophobic. They can’t regain their flexibility easily. This is one of the most powerful long-lasting effects. Many people recovering from topical steroid addiction TSA and topical steroid withdrawal TSW find it difficult to get that trapped nitric oxide to release so that they can recover their sweating function and other lymphatic purging of toxins from the body. 

Imagine those transportation highways and toll roads congested with toxins that don’t allow new, fresh oxygen, blood and other solubles in and out. A topical steroid withdrawal TSW person will spend much time and energy trying to purge those toxins via the opposite action of increasing vasodilation.  Once that happens, and the opening up of the circulation system begins, a process of the body purging and oozing out a pungent, sulfuric, yellow substance. As awful as that sounds, it truly is a miraculous and major breakthrough in the recovery process and can take from a few months to an indefinite amount of years to be thoroughly released and liberated.

Another suspicious phenomenon is how there may actually be a reservoir supply of steroids captured in these vascular transport systems. That would mean longer lasting effects maintaining traces of steroids long after application. More studies and better technology are needed to confirm this theory.

Question 3: How do I keep track of what my body is receiving and in what dosages?

Answer 3: Keep a diary log of prescriptions. Note how long each one was used for and when it was refilled. That way you have a record of potency, quantity and the length of time for each medication. Track your own recovery from a flareup by the most important thing you can do – TAKE BEFORE AND AFTER PICTURES! Then track how long you stayed off the steroid medication before another obnoxious flareup bloomed. 

If the time between is getting longer, that’s a hopeful sign. If the time between is decreasing, that’s a serious indication that your body may be entering an iatrogenic state of dependence on steroids. Quite possibly a new strategy needs to be implemented to consider the possibility that topical steroid addiction may already be taking effect. With this information you can work out a more careful strategy with your doctor.

It’s kind of similar to tracking lightning and thunder storms. Where once the lightning strikes you count the seconds until the thunder roars. If that is 5 seconds and the next cycle of lightning and thunder is 8 seconds, then the storm is going farther away. If that cycle is 3 seconds, then the storm is getting closer to you!

Same thing with the flareup cycles, it can be connected by patterns and monitoring the phases between each flareup. Unless of course, there is another obvious trigger like a sudden stress load that snuck up on you or an exposure to your allergic trigger. Again the health journal is everything during this confusing time. Your doctor will appreciate you even more!

Question 4: How do I know if the medication is working?

Answer 4: That comes back to quality of life in between the cycles of application. The magic of steroids will make life grand upon application. It’s when you are off them that really counts. You must evaluate the time in-between and measure that and how much relief you are gaining or losing. That’s the primetime for you to be focused on building up your entire immune system. We’ll get to that in our subsequent book, SKIN CONFESSIONS later.



Adverse Drug Reactions

Topical Steroid Side Effects

Question 1: Shouldn’t there be a quality control system in place to monitor drugs and if they are safe for everyone?

Answer 1: Guess what? It does exist! The number is 1-800-FDA-1088.  Seriously. That is the number and it is easy. Go ahead and program that into your phone. You can also go to the FDA.gov website and report online as well. Unfortunately, most people do not know how to report a negative reaction to a drug. But now YOU know. How cool is that? And you can help let others know that any drug they take should be monitored and any unusual reactions can easily be reported.

Question 2: What are the Legal and Ethical reporting responsibilities of doctors when they witness or suspect an Adverse Drug Reaction (ADR?)

Answer 2: There is no legal obligation to do this, but we all should argue that there is an ethical obligation to do so. This is where you can learn more about a physician’s important role in recognizing and reporting suspected ADRs – Adverse Drug Reactions.

Question 3: So why is there a gap in reporting, and why don’t the statistics reflect them properly?

Answer 3: The problem is that most people do not report back to their doctor. Patients should ask the doctor to report it – which would have even better results and echo louder in those long corridors of the FDA.  Another very real problem is that so many people are intimidated by their own doctors or fear the doctor will only prescribe stronger prescriptions. After a few cycles of using topical steroids, and the problem exacerbating further, a patient’s intuition kicks in that the problem may just be getting worse, and they feel they are on their own to explore other options. Many people just don’t go back to the doctor when the problem gets worse. They opt out and start exploring on their own.

Meanwhile, doctors do not have an alternative to offer their patients. That is part of the medical world’s unusually dependent attachment to steroids. To doctors, the benefits are still higher than the risks statistically. They have not heard otherwise (yet.)

Question 4: What happens when patients disappear ‘off the grid’ and don’t go back to doctors?

Answer 4: It causes the statistical data to be skewed. The assumption from doctors is that if you don’t come back, then the problem cleared up. If you do not communicate the complete picture of side effects, the doctor is in the dark too.

The entire statistical picture is not being reported. Partially because of patient disillusionment or just giving up in search of other solutions. Topical steroid abuse and lack of efficacy are the missing pieces to the puzzle. Patients and doctors are not partnering up to communicate back to the pharmaceutical companies and the FDA that the drugs were futile or making the problem worse over time.

Question 5: Is there any other centralized reporting system that patients can access to get honest information about drugs or certain therapies that do or don’t work?

Answer 5: YES! We are so excited about this – that we mention it over and over in this book. You can jump to Section III ~ Chapter 1 to read Patients Like Me. Go ahead skip over everything and jump to that and then come back here to dive deep into the serious stuff about topical steroids. Enjoy reading about that incredible forum just for patients!

A Love Affair with Steroids

Topical Steroid Side Effects

If you’ve ever asked yourself any of these questions…

What’s the big deal about my prescription medication creme for my eczema or psoriasis? My doctor told me it was totally safe, and I had nothing to worry about. Why is the internet now flooded with what seems to be way more exaggerated information about topical steroids being dangerous or worse yet, addictive? Why are doctors so defensive about any criticism of corticosteroids? Whom should I believe when my doctor tells me to take higher dosages for longer periods of time than what the manufacturer insert recommends? If topical steroids are so dangerous, why are they still prescribing them? Whatever is inside these miraculous cremes, they are amazing because my flareups literally disappear overnight when I apply them – they obviously work, so why should I stop using them?

Funny you should ask…

We’ve been wondering the same thing. That’s why we, here at ELAJ, have listened and documented so many eczema/psoriasis case studies. Listening is a powerful tool and when the same story repeats over and over, it’s a sign that something is up. There is a clear trend. They may not be as effective and safe as we’ve previously been led to believe.

This handy reference guide hopes to help shed light on growing concerns about the history of steroids and how awesome they’ve been, and yet, how dangerous they can be when misused.  The key question is how will you know what is misuse, and will you be able to identify it just in case it does happen? In this book, we are especially concerned with topical steroids in treating chronic skin conditions such as eczema, psoriasis and rosacea and other inflammatory skin problems. Let this book be a resource you can share with others and medical practitioners who may still be reliant upon the decades’ old information about steroids and yet may benefit from the new waves of information now available.

Question 1: Why the love affair with steroids? 

Answer 1: That’s easy. They truly are sexy and magical in a biological way. When you discover how steroids continue to save lives and how they changed the course of medical history, you’ll appreciate the miracles that they are.

But what if our dependence on steroids interrupted further research that could identify the root cause of the original problem? It’s as if steroids came into the medical landscape and they became the end-all solution when they were never intended to be the cure for long-term chronic conditions like eczema and psoriasis. They were intended to be a bridge. However, the medical establishment became more and more comfortable with steroids instead of the costly and difficult research of the deeper elements that cause inflammation.

As for dermatological research, we are happy to say that we are now on the cusp of exciting new discoveries. With skin microbiomes and bacterial diversity research, we are truly witnessing an incredible moment in history. More on this in Section III.

Question 2: Is there a visual resource for me to compare and cross-check if I have similar symptoms to steroid side effects?

Answer 2: Seeing is believing. Words cannot do justice to the cycles of eczema/psoriasis increasing into a more iatrogenic disease as a result of topical steroid misuse. This video link here  made by the International Topical Steroid Addiction Network (ITSAN) gives a quick summary of symptoms and progression of eczema turning into a whole life-changing process. 

There is also a music video called, Topical Steroid Side Effects here.

The Undeniable Magic of Steroids

Topical Steroid Side Effects

Question 1: How is it that steroids are so amazingly effective?

Answer 1: Yes – they are magical. Modern medicine has been able to make medical miracles happen thanks to steroids! They are known as anti-inflammatory drugs or immunosuppressants and can make things disappear. They can instantly give relief. They can stop the body from attacking itself. They can cure a cancer like lymphoblastic leukemia. They can help an asthma sufferer actually breath on-the-spot. They can stop allergic reactions cold-turkey.

Without steroids, organ transplants would have been practically impossible. “Glucocorticoids were one of the first classes of medications used to prevent rejection after solid organ transplantation.” They help by allowing the other organs to slowly get to know the new organ or prosthetic without the immediate attack response system kicking in as if a new foreign alien was among them. Steroids allow an acceptance period for the original organs to accept the new kid on the block (new organ) to learn and tolerate each other’s differences by suppressing the hyper responsive immunologic protection reactions to not occur right away.  For this reason, the medical community weighs the good they have done and respects the need for a system of tapering off steroids in a closely monitored manner.

That’s why you may have noticed drugs like Prednisone are given with strict guidelines to reduce oral intake each day over a period of time. This is key to allow all the organs and endocrine system to re-adjust back to their own normal activities, but nice and slow without causing another shock to any organs.

Recently in the last 10 years, steroids are being re-evaluated in comparison to other newer drugs that may replace or substitute them. According to the American Society of Nephrology they have found stopping immunosuppressive prednisone even sooner after transplants was found to be safe to avoid serious side effects including high blood pressure, high cholesterol, diabetes, cataracts, bone loss, increased bone fractures, mood swings and, in children, growth retardation.

Many doctors accept that steroids were a necessary tool with maximum effectiveness for chronic  conditions like arthritis, psoriasis and eczema for immunosuppression previously, but many now suggest that they are no longer the best option. Especially with low-risk populations that can do well just as well without the side effects.  New drug therapies have been showing better results.   This marks an exciting new pivot point in steroid therapies. Could the future of medicine start crossing a new bridge towards alternatives? How does that translate to the topical steroid therapies for skin immunology? These are all questions we are starting to witness exciting answers to in our lifetime!

Question 2:  Exactly what are steroids?

Answer 2: Steroids are synthetic versions of our own natural hormones. Surprise! Now here’s a little fact. Most drugs are just the synthetic versions of what your body already makes. Because sometimes our body just needs an extra push or wake-up call to readjust itself.  Steroids are synthetically-derived hormones from plants like the Mexican yam that mimic estrogen, progesterone and yes, even the manly machismo hormone of testosterone. Birth control pills started out as simple variations of those basic molecules from a yam from a farm out in Mexico! The pharmaceutical manufacturers add a couple of basic variations to take something natural to be able to molecularly patent it, to make it proprietary so they can profit.

Similarly, antibiotics are just a trigger of a small fraction of an actual illness or bacteria for your own natural antibodies to kick in. They learn how to fight it. Your body is loaded up with soldiers on-call. This boot camp of yours even has its own elite soldiers that create memory immune cells to fight that pathogen invader anytime in the future to always fight that bugger, but in more heavy-duty dosages. You are a walking, flying, swimming military compound of the highest tech equipment and fighter systems!  We think there is nothing sexier than a strong, handsome immune system like yours all powered up and ready to defend…Go, YOU!

Question 3: Are these the same steroids that body-builders and athletes take to buff their muscles up?

Answer 3: There are two main categories of steroids. One is corticosteroids which is what we will be referring to here in this book. Topical steroids falls into this category. They are the cortisone substitute for your natural cortisol hormone produced by your adrenal glands. Your hormone cortisol slows down inflammation. That’s exactly what the steroid medications intend to do when applied, ingested, injected or inhaled are designed to do. 

The other is anabolic-androgenic steroids. They are man-made versions of the male sex hormone, testosterone. When a male does not produce enough testosterone, a doctor may prescribe to help adjust production. In certain cases where a person has lost considerable muscle mass due to certain cancers, AIDS, atrophy and other debilitating diseases, a dosage of testosterone may be necessary to quickly rebuild tissue. However, the illegal and controversial use of anabolic steroids is a constant menace among the sports industry today.

Question 4:  Exactly how do they work?

Answer 4: Our discussions here are primarily about the corticosteroids, so let’s imagine your body sends a text message to let you know something is wrong in the form of an alarm bell or an obnoxious car theft signal. Sometimes this message appears as a rash, itching, and/or swelling on your skin. That basically means something is wrong on a deeper level. It could be a food or medicine allergy reaction. It could be something simple like the anti-bacterial soap you are using. It could be the liver working overtime. Another common culprit could be stress! It could be a combination of any of these and other variables.

That does not mean you need to put a band-aid on it. It does not mean for you to silence it and tell it to just calm down. No one ever calmed down when you told them to calm down, right? Same thing here. That original irritation or text message means your body is asking you to go to a really good mechanic (doctor) and get some deep diagnostics to figure out what your body is rejecting. Something’s up. It does not send you a random false alarm.

Question 5: So, when I get an itchy rash, that actually means my body is trying to communicate something more serious to me?

Answer 5: Yes. Your body is being kind and merciful by letting you know something more serious is going on. The problem is as soon as you get this alarm, we have been conditioned to a knee-jerk reaction to prescribe hydrocortisone or a stronger topical steroid without asking the more important, WHY? What caused the irritation, rash, inflammation, itching, redness in the first place? The really important questions are not being asked!

And yes, the magic cremes are pretty darn impressive. I get it. But no. You and your doctor did NOT even read the text message. You jumped without questioning or trusting that something is going on inside. There could be a foreign invasion of an allergen, bacteria, pathogen or some toxic fragrance from a cheap air freshener or laundry detergent that is messing around with your immune system.

Meanwhile, if there are any excess levels of sugar, gluten, and/or alcohol that your poor liver is already struggling with, that creates a system overload. You know when you are stressed out, you have a tendency to turn to chocolate or a couple more glasses of wine? A stress reliever for you, is a stress burden on your poor liver! That’s when your liver has no choice but to push it back out into the bloodstream. Don’t blame your liver for this.  That rash is the big boss, your liver and your immune system begging for mercy.

Instead of focusing on listening to your own immune system communicate with you, you call these superhero forces (topical corticosteroids) to clean up the problem and get rid of the evidence and suppress those important text messages instead! So then it’s nearly impossible to detect future occurrences without reaching for more of the topical steroids instead of wondering deeper that a more systemic problem is developing.

But every crime leaves a clue, and that’s why you are reading this book.  We salute you for reading up on this mystery. You’ll learn more about how steroids work throughout this book.

Question 6: So, what am I supposed to do when my skin goes crazy?

Answer 6: You need to step up and be the captain of your own ship. You need to check your location, check your supply tanks and prepare for a journey of discovery. 

Take a breath and start asking the real questions. How? When? Where? What? Why? Start a health diary to help you jot down any and every possible trigger. Take pictures and mark the date and times of when they were taken. Connect the dots with any other hormonal cycles. Where you studying for an exam and stressed? Did you eat junk food? Did you lose sleep? Did you celebrate with sweets or alcohol? Did you change your environment? Bed sheets? Laundry detergents? Be an obsessive detective and work backwards towards the scene of the crime.

Don’t panic by reacting too quickly. By applying a topical creme such as hydrocortisone, those adrenals will wonder why they even laced up their boots to show up for the battle. They love drama! Hence, the name ‘adrenaline.’ They want a piece of the action. They’ve trained in boot camp for this glorious moment to protect you. But you? You didn’t even give them a chance. You may be missing an opportunity to monitor when the flareups take place and what the culprit is.

Meanwhile, the sad truth is the original problem is still there lurking around waiting for another opportunity to poke through another message to you. But it knows to stay on the low-key like a creeper for a while. So it just kind of chills until it thinks the drama is over or it goes to another neighborhood in a different location on your body and marks its territory somewhere else. Another rash again? Another text message, ‘We are here! Hello – can you hear us now?’  This is a cat and mouse chase like no other. Just when you think you nipped it in the bud, it comes back with a vengeance. That’s because you didn’t figure out what the original problem was. Welcome to “Steroid Rebound Phenomenon!”

Disappearance of Symptoms

Topical Steroid Side Effects

Question 1: How is it that steroids make my eczema/psoriasis disappear so magically?

Answer 1: Just because you can’t see it, doesn’t mean it’s not there. Steroids help silence the symptoms and disguise the real problem.

Question 2: Why does my eczema flare-up come back with such a vengeance?

Answer 2: Because you tried and shut her up. Your Derma (skin) does not appreciate being shut up and locked out of a discussion with the rest of your body. She’s trying to tell you something. She will keep nagging until you read between her lines and go deeper into the original cause. Remember that first message she tried to text you? Now she’s angry and wants you to know it.

Question 3: So why is my eczema spreading around in new places?

Answer 3:  Since you didn’t deal with the original allergen or problem that your liver and internal organs were trying to communicate, those rebels went to go find an open bar somewhere else. Maybe this time in a different location further away. Those little rebel soldiers will keep you up and party until the bar shuts down at 2 am. That’s when they love to come back and mark their new territory and shout in their belligerent and obnoxious voices on the rooftops, “Can you hear us now?”  This is the beginning of the tug of war between your immune system and your skin.

Question 4: So I started with contact dermatitis and now I have atopic dermatitis – is this how it spread?

Answer 4: Yes. These are the risks that were probably not mentioned by a doctor in a rush to prescribe. Nurses are the most susceptible to this phenomenon worldwide. Especially since they are already prone to immune rollercoasters working at medical centers. What starts as a local problem with their hands from washing with highly toxic anti-bacterial soaps so frequently to using immunosuppressants ends with them converting contact dermatitis to atopic dermatitis while jeopardizing their immune system. This has been a problem with workers compensation absenteeism and a workforce that has been in short supply for the last 10 years.

Rebound Phenomenon

Topical Steroid Side Effects

Question 1: What is “Steroid Rebound Phenomenon?”

Answer 1:  Steroid Rebound Phenomenon is a vicious cycle that your adrenals glands play with you to keep cortisol in your body. Since you originally SHOUTED at them that you don’t need them to be producing their own cortisol, they took the lazy way out and decided to sit out the game. They figured you’ve got some other drug pusher supplying you with ‘the good stuff’  aka cortisone, and the adrenals took that as you don’t need them. Once you stop applying topical corticosteroids your ADRENALS SHOUT BACK AT YOU IN REBOUND MODE!  They are telling you to keep applying steroids because they don’t want to make their own anymore for you.

Question 2: What does the rebound look/feel like?

Answer 2: It’s like your adrenals are full of revenge and they want you to know it. Basically, they will flood your body with histamines and other itchy, obnoxious red rash types of text messages to your skin to alert you to go back and apply those cremes again.  Meanwhile, you are in a tug of war of wanting to quit those cremes, but your adrenals are so stubborn and don’t want to go back to work. So what do you do? You try and quiet their temper tantrums by applying more topical steroids. “Just this once…I promise, and then I’ll quit.” Sound familiar?  That’s the rebound phenomenon where the ball comes back to your court…again…and again.

Question 3: How do I stop playing this vicious game?

Answer 3: This is a tough call from the referee, YOU! You have to call the shots .  Quitting steroids is not easy. Timing is everything.  This is a big decision and you’ll have to do the research.

Go to ITSAN.org and chat online with some of the topical steroid withdrawal veterans that have been through the worst stages already. Start building a network of support. Start planning your life around what could be a major journey. Sometimes life gets in the way and a milestone like a wedding, birth, graduation may not be the best time to risk going into a difficult withdrawal process. You’ll need a supportive circle around you.

It may take time to educate them on what may happen and what to expect.  So while you are learning, you may need to teach others as well. This affects more than just you and it would be wise to plan with your loved ones to possibly step up and be there for you.

On the other hand, you may just breeze through it and realize your immune system is strong with or without steroids. You just may be one of the lucky ones that came through without setbacks to your hypothalamus, pituitary, adrenal (HPA) axis.

What is Topical Steroid Addiction TSA?

Topical Steroid Side Effects

Question 1: How would I know if I’m addicted to topical steroids?

Answer 1: It could be as easy as seeing if you can quit. Usually, your body will tell you within a few days or weeks.  If you have a reserve of synthetic steroids built up for a long period of time like a few years’ worth of heavy usage, it may take 1-4 months. At that point, your adrenal glands are forced to wake up and realize that they can’t take it easy anymore and they have to get back to work.

Upon stopping or reducing the use of topical steroids, the flareups begin again. With each cycle of stopping, the body communicates that it wants more. Take a long picture of your body front and back wearing minimal undergarments or nothing, if possible. This will serve a baseline as your starting point. Mark your calendar. Begin a journal of monitoring the time frame of when another flare begins to appear. Is the flare worse?

If a few weeks go by without a flare – great! Keep it up for a few more months just to be sure. If three months go by without any major flare-up and/or large red patches appear, then you may be in the clear.  It does take at least a few months or so because the body has been known to keep a reservoir of topical steroids in the most minute areas of the vascular system due to the vasoconstriction that topical steroids cause.

Remember your normal eczema patches and flare-ups are not what we are referring to, but rather a larger surface area of red skin that feels burning deeper inside and almost like the skin is wearing a red long sleeve shirt. If your skin flares up in a more angry, feverish kind of way then you may begin to see different signs and symptoms progressively.

Question 2: How will I know it’s not just another eczema flare-up?

Answer 2: TSA and RSS are different than eczema in that they encompass larger surface areas than the dry, spotty eczema patches that you may have had earlier on before starting topical steroids. There is a deeper burning sensation that goes beyond a local itching flareup.

Question 3: What kind of reaction can I expect if my body is addicted?

Answer 3: Remember in the first chapters when I mentioned those adrenal glands are like the schoolyard bullies? They get spoiled quickly and feel entitled to the slow, lazy life and they don’t like it when they actually have to do homework and work with the thyroid again rebalancing out your body’s temperature, metabolism and re-strengthening your immune system.

So…they get angry. They will definitely let you and every part of your body know. How? By causing a few reactions such as:

A body flushed with red. It may look like you are wearing a red turtleneck sweater with long sleeves. The red usually appears around the neck, chest and may be stronger in those areas and then also along your forearms right up to your wrist. For some crazy reason, the red flushing usually stops right about there. Sometimes it does cover the hands to the finger tips too.  On the legs, it will usually stop right at the ankles. Don’t be fooled into thinking that only the original areas where you applied topical steroids would be affected. Once they are in the system   the red flushing can appear anywhere, it is not specific anymore to your original eczema dry spots. You’re in the big leagues now of systemic side effects of topical steroids. 

Extreme body temperature fluctuations and hot/cold flashes.

Nausea, vomiting, lack of appetite or a voracious need to eat.

Extreme case of body itching. Some have reported itching so deep that it feels like your bones are itching. It really is that deep and intolerable.

A sudden dryness to your skin that is far worse than the original eczema or psoriasis flare-ups. Some crusting areas around lips and hands and crevices like inner elbows and knees making it virtually impossible to move or talk.

Full body dandruff with constant flaking – that’s from the extreme dry skin.

Some experience a phenomenon of oozing or the sensation of sweating a yellow or clear substance that has a pungent, sulfuric smell.

Severe insomnia and disruption to sleep quality.

Weight loss/gain. More likely it will go the opposite way of what you want.

An immune system that is generally weaker thereby allowing any cold to turn into something more dramatic that lasts longer.

Change in eyesight and/or development of cataracts and changes to the Interocular Pressure (IOP). Please get your eyesight checked 3-4 x per year if you’ve used any topical steroids on your face. 

Decreased sexual libido, fertility, and increased dysfunction.

Bone loss, weakness from mineral depletion. In children or babies, it could translate to stunted growth and lower bone density.

Symptoms of diabetes, Cushing syndrome and other auto-immune conditions.