This blog follows my journey as I quit topical steroids for my eczema. I will chart my observations during the weeks that follow.
The blog is not intended to give medical advice. If you are concerned about a medical condition you should consult a doctor for advice.
Any steroid cream used on the face is likely to affect more than just the facial skin. there is a lot of evidence to show that it can affect the eye too. In fact, prolonged use of potent steroid creams on the face has been shown to cause glaucoma and cataracts.
When I used steroids daily on my face (betamethasone), I had recurrent eye infections, as well as nasty herpes infections on my eyeball (Ugh!) and eyelid. I never made the connection between the infections and the steroids, but I think that the creams lowered my immunity, thus causing the repeated infections. Interestingly, now I have stopped the steroid creams, a good side effect has been that I have had no eye infections at all, or any cold sores on my face or around my eyes.
However, this brings me to the rather odd subject of eye goop! Let me make this clear, most of the time, eye goop is NOT infection. It is just a weird side effect of steroid withdrawal that occurs in some people. Although I am not a doctor, my theory is that just as the blood vessels in the skin are dilated and damaged by TSW, so are the blood vessels in the eye, causing swelling and discomfort just like in the skin.
My personal experience has not been too bad. In the very early weeks of withdrawals, I noticed that my eyesight was blurry. I would try and read text on the TV and it was all blurred. I thought I was losing my sight! I quickly made the connection with the TSW though, and the phase did pass after a couple of months. I can see fine now!
I have had the odd morning when my eyes have been swollen and gooey on waking. This disappeared as the day went on, thus showing that it was not infection, just a side effect of TSW. Here is a picture of my eye at its worst:
That particular morning, I woke up with puffy, gooey eyes. You can see the skin under the eye is saggy too.
Here are a few comments from the google forum about their experiences with eye problems:
"They were literally oozing so much stuff last night I just gave up and let it be. It was a sort of sticky goop coming out and I was having trouble seeing. "
"We also tend to get lots of eye goop and hay fever-like symptoms, so in the beginning, I'd wake up with my eyes crusted shut. Now after a year, my eye goop is almost gone, eye puffiness is minimal, and my runny nose is a lot better. "
"I think eye puffiness is common. I certainly woke with puffy eyes for many weeks and my eyes were usually full of yellow goop. For some reason, this persisted much longer in one eye (my right eye), in fact, it has only been in the last few weeks that I have noticed that I am not waking up with a puffy right eye. I recall others saying something similar"
In conclusion, eye problems, including puffiness and discharge are completely normal during withdrawals. on a bright note, recurrent infections, such as conjunctivitis and herpes may become less of a problem once steroid creams are stopped.
My skin has descended into another mini-flare over the weekend. I thought I had seen the last of the oozing, but last night I woke up in the early hours with sticky ooze on my elbow flexures, chest and neck. The ooze was nowhere near as intense as previously, but it seemed like a huge step backward for me. I currently have no flaky skin, but plenty of red, juicy skin, which feels tender. My kids want hugs, but I wince with pain when they hold me tight!
I try to be philosophical and view each flare like a dose of medicine, necessary in order to heal a little more. I know that these flares are short lived, now, fizzing out after 2 or 3 days, and that helps keep me strong. The periods between flares are longer now, usually a week or more. In the beginning of withdrawals, I would have weeks of flares with the odd break, but it is the other way round now.
I know stress is a major cause of flaring, and am a little concerned, as I am due to move house in the next couple of weeks. I am sure that the upheaval of moving will cause my skin to go crazy, but I will have to cross that bridge when I come to it. I feel grateful that at least I have five months under my belt and I am in a good position to help and share experiences with the many new people that come to the forum every day, looking for answers.
Almost everyone who stops using topical steroid creams experiences a severe wave of fatigue at the beginning of withdrawals. The tiredness is overwhelming, and it certainly took me by surprise when I first stopped the creams.
The fatigue first hit me a few days into withdrawals. I suddenly felt overwhelmingly tired and lay slumped on the settee day after day, with little energy to even get up and perform basic tasks. It was as if something had sapped every last bit of my energy. All I wanted to do was sit quietly and stare out of the window, which is not like me at all. I am usually the kind of person who gets fed up being stuck in at home and wants to get out and do things, but this fatigue knocked me down hard.
Despite the overwhelming tiredness, my sleep patterns were haywire. I would go to bed, feeling exhausted, but lie awake for hours, before dropping off for a couple of hours and waking again later. in the early weeks I would routinely lie awake until midnight, fall asleep, wake at 2 a.m., sleep again, wake at 4 a.m. and then go into a very deep sleep until I had to get up. It was if my body clock had shunted ahead by a few hours. Even now, five months into withdrawals, my eyes pop open at 2 a.m. every morning without fail, but thankfully, I soon fall back asleep again nowadays.
There is no doubt in my mind that the extreme fatigue is down to stress on the adrenal glands. These little glands sit on top of the kidneys and are responsible for regulating many important bodily functions. One important hormone regulated by the adrenals is Cortisol, an important steroid hormone. It affects the immune system and blood sugar levels in the body and is produced in response to stress. The body detects cortisol levels and either increases or decreases production on demand. Unfortunately, when steroid creams are used, the cortisone in the creams fools the body into thinking it is producing sufficient cortisol, and the adrenal glands slow down cortisol production. When steroid creams are suddenly stopped, the adrenal glands need time to recover and start making their own cortisol again, and this is what causes the fatigue.
Here are some of the experiences that the members of the google forum have had concerning withdrawal fatigue:
"...I had crisis on Tuesday, headache and tiredness, so I was sleeping almost all day (of course I didnt sleep at night, I think its been 2 months now since the last time I could sleep before 6 am). Does anybody know what is the case with this insomnia?"
"Hi, just a quick question to anyone out there ... did the Red Skin Syndrome make you feel more tired than you have ever been in your life? I slept in the afternoon yesterday for three hours, then last night from 12pm to 9am, now, i feel as though I want to go back to bed already. I have been like this for about three days now. Night sleep is restless, but that's nothing new. The terrible fatigue, however, *is* new. I know its a trivial complaint compared to the various other symptoms we are all enduring, but is this terrible tiredness usual? I feel as though I never want to wake again. thanks. "
"I just want to be in my bed even just when face and neck is flaring, having no energy. Originally when flaring on steroids I thought it was just that I didnt want to face the world (that too!), but it feels so much like fatigue, which leaves after flare subsides. The amount of energy I have between flares can be enormous, it's just a rollercoaster, one hour at a time. "
This extreme tiredness is a symptom very early on in withdrawals. As the adrenals heal and the body begins to recover (we are like burn victims), energy levels slowly return to normal. Those in the early stages of steroid withdrawal need to rest and listen to their bodies. this phase will pass soon enough.
Excess skin is a weird symptom associated with topical steroid withdrawal. I am thankful that I haven't really had much of a problem in this area, other than the skin being a little baggy around my finger joints and wrists during bad flares, but this has subsided.
However, the problem of loose skin, lacking elasticity is a very common side effect when people stop using steroid creams. Here are some pictures of skin affected this way:
I am not a doctor, so don't understand why the skin reacts this way, maybe if there are any doctors reading this, they could shed some light on the subject for me! It's pretty scary thinking that prolonged steroid use can affect your body like this though. The good news is that the skin apparently does return to normal eventually, so this effect is not permanent.
Here are some comments that the members for the google group have made regarding their observations of excess skin on their bodies during steroid withdrawal:
"I'm just wondering if everyone is experiencing the extra thick skin in joints. In my elbow, knee and ankle joints I am finding it difficult to move freely because of the extra thick skin and/or swelling there. I am not sure if it's the skin or if it may be swelling. I can't squat for example and my ankles are very tight if I try to point my toes. "
"Yes (my son) has lots of extra skin around his wrists/hands/ankles/feet and some appearing on his lower back, just been reading the bumph the hospital sent home with us last week, and its says that 'blistering. scaling and thickening is lichefication. The extra skin that (my son) has seems to be formed by much thicker skin, almost like an elephants hide. Sorry bizarre metaphor but it is thick and folded like that.
"right now I have elephant hands, for sure. They look ridiculous, can't believe they're mine, they look way too old..."
This odd and distressing symptom of steroid withdrawal is only temporary, but is obviously very scary for the person experiencing it, especially if it is a young child. This symptom is yet another powerful evidence of the damage that overuse of steroid creams can do, when potent creams are used over a long period of time on the skin.
Since my lovely improvement photos on day 148, my skin decided to rebel and go into a slight flare. The flare has mild compared to previous ones, but was still enough to put me on a downer, as I really wanted to believe I had seen the worst of it and that things were on the "up" for me.
Arms that had been white a few days before became red and blotchy once more and my face, which had been clearer than ever suddenly developed sore patches, which oozed a watery substance. This hit me quite hard emotionally.
Luckily, the flare has been quite short lived, and I felt well enough to go out last night. Ironically, despite the fact that I had been bemoaning the state of my skin earlier that same day, a friend of mine passed comment on how good my skin was looking.
"Your face looks great" she said. "So much better."
I was quite taken aback because I thought I looked grotty!
Then came the best line, which really made me smile....
"Have you gone back to using the steroid creams then?"
No! I blinkin' haven't!
It was good to know that people are noticing an improvement in my skin, even during what I would consider a bad phase. It just goes to prove that we don't need steroids to have good skin.
Changing the subject, the blog list on the right hand side of my page has grown massively over the last few days. More and more people are waking up to the idea that steroid creams are bad medicine, and are getting themselves, or their children off the creams. Please, if you haven't read any of my featured blogs, take time to look at the new ones.
"Itchy little world" is a great resource for all things allergy related. The mom who writes the site tried using steroids on her child years ago and found, like I did, that they cause terrible rebound symptoms.
Parents are really getting on board and challenging the idea that potent steroids are safe to use on kids for extended periods. Some of the blogs that I feature, such as kelou's blog and the new blog by Kline's mom are by parents who decided to stop using steroids on their kids after many years of daily use. The future is bright for these kids, as studies have shown that kids heal a lot quicker than adults from steroid addiction as they have less accumulated steroid in their bodies. My heart goes out to these amazing parents. Please read their stories.
Other blogs that I feature are International. Spela and Fay's blogs are designed to reach the International community and educate the world about the dangers of steroid cream overuse. In many countries, steroids are used as skin lighteners and addiction is common.
If anyone has a steroid withdrawal blog that they would like me to add to the list, please let me know. Please note that I am specifically interested in blogs about personal experiences of people coming off steroid creams.
Depression is a very real side effect of topical steroid withdrawal and although it is not a physical symptom, it can be just as devastating.
We know from articles written by Dr Rapaport and Dr Fukaka that healing from steroid withdrawal takes a long time. People who have used potent steroid creams for many decades may take several years to completely get over the damage that the steroid creams have done to the body and blood vessels. Withdrawal symptoms are hard to deal with, including burning, oozing and pain. Prolonged exposure to these debilitating symptoms causes the sufferer to become deeply depressed, despairing whether they will ever heal or regain normal skin.
It is not just the way that the skin feels that causes depression. it is also the way the skin looks. TSW causes a red, flushed face, sometimes with oozing and yellow crusts, sometimes with pustules and pimples on the skin, or scratch marks due to itching. Facing the world, with its high expectations of physical perfection, is a daunting task. I feel ugly all the time.
During the first few months of steroid withdrawal, the adrenals go crazy, causing extreme tiredness and an inability to perform even simple tasks, like cleaning or preparing food. If someone has had a previously active and busy life, this sudden lack of ability can be devastating and depressing.
I have had highs and lows over the last 5 months of steroid withdrawal. When my skin is good, I am so happy, but it is awful to see good skin disappear into a flare and this causes me to get very sad and teary. I have cried a lot during this time, sometimes shouting out and screaming because of my inability to cope. in the early stages, when my body was on fire and all I wanted to do was lie quietly on the settee, I would wail and moan like a child having a tantrum. It is incredibly draining, both physically and emotionally.
Emotionally, I am in a lot better place right now, although it only takes a brief flare up to make me feel "down" again. I actually have been flaring a bit over the last 3 days, after a long period of good skin. This has made me quite teary, as I really thought I was over the worst of it now.
Here are some comments from the Google group about TSA and depression:
"..am i the only one who can't do this? i'm trying really hard to forget what i've lost and forget this pain/itch/discomfort.. but this depression is like a blackhole that sucks me right in. sure, i'll feel fine for maybe 2% of the time.. the other 98%, i'm back to that creature who locks herself out from alot of people.. i can't face and interact with them right now. even the closest people to me.. i find it hard to face them for the fear of showing them how depressed i actually am."
"Tears are a constant. Depression has arrived. I'm not strong enough for this."
"I had many days of crying. Just defeated, depressed, skin aching, crying! My husband would lose it when I was crying. It hurt him to see me like that. Now we have days of laughing and hugging, which I couldn't do for a LONG time due to painful skin. Most of the time when I was crying, it was what I was thinking: Will this flare ever end? Will I ever be normal? etc. Try to stay in the present moment. One day at a time. You can do it! I did it and it almost broke me. "
Topical steroid withdrawal is a dark time and anyone considering stopping steroid creams should prepare themselves for the fact that there are going to be hard times ahead. I am not writing this to put anyone off steroid withdrawal, but people need to be realistic about how hard it is.
When TSW gets me down, I try and focus on all of the success stories and pictures of people that are healed. I imagine myself in that position at some point in the future. Some of these photos are amazing and prove that healing IS possible. If we stay positive and have a confident outlook, we can successfully ride the wave of depression that comes with Red Skin Syndrome.
The skin is the largest organ of the human body and responsible for many body functions, including the regulation of temperature. it is understandable, therefore, that when something is wrong with the skin, body temperature can fluctuate and chills and sweats can occur.
Chills are a common symptom of TSA/TSW and a symptom that I personally have experienced. When I first stopped using steroid creams, I would fluctuate between feeling very hot and very cold. I remember sitting on the settee with a blanket over me and I could feel the heat rising off my body in waves, as I shivered and juddered under the blanket.
Now I am five months into withdrawals, the chills are less intense, but I still experience them in the evenings quite often. I wrap myself in layers of clothing and start shaking and shuddering, whilst everyone else in the room tells me that they are perfectly warm! Chills may or may not be accompanied by sweating, as many people find that steroid use over a number of years actually causes sweating to stop, as it suppresses the sweat glands. In fact, sweating can be a good sign, as it shows that the sweat glands are no longer paralysed by the steroids in the body, and the body is slowly returning to normal.
Here are some comments about chills made by the members of the google group:
"I am 7 weeks into w/d and the whole time the chills have affected me quite bad especially today, I look like a crack head needing my next fix is as best as I can describe it. Its peak of summer here in NZ (23-27 degrees) which is quite hot. When I get in the car I'm cranking the heat instead of the AC.!!"
"I did get really bad chills. It was mostly in the first few months along with the profuse sweating. My body temperature was totally out of wack. I'd be shivering violently and bundled up in blankets while everyone else was in T-shirts. Meanwhile I was sweating and oozing through my clothes. I hated this stage because the sweat would make me itchy and I was always freezing."
"While on steroids, I had chills and shivers all the time. I remember my teeth even chattering. But I am not sure I was really cold. It was a wierd chill that almost came from inside the body. I could not stop shaking... "
Chills are an unpleasant symptom of topical steroid withdrawal, but like most symptoms, they do tend to subside over time.
My topical steroid addiction started like many others. Typical eczema as a baby and child (links to immunisations cannot be ruled out) which was mainly confined to the elbow and knee creases. I cannot remember when I started using corticosteroid creams on my skin, but I know I was a young child. My teen years were no different it didn’t trouble me all that much, but at 21 years, I had a severe outbreak I now recognise to be my first experience of topical steroid withdrawal.
For 14 years I then experienced different degrees of withdrawal symptoms, of course not realising this at the time. My face was burning red followed by flaking skin. Skin so tight I could hardly smile at the end of the day and all I longed for was to go home and soak in a bath. My work and social life suffered and I really didn’t like being around anyone when I was so uncomfortable. I visited several GP’s, Dermatologists, Herbalists, Naturopaths and Chinese Doctors trying to find out what was causing these terrible reactions in my skin. I tried eliminating dairy, wheat, alcohol, dust, stress etc and I hate to think how much money I spent over these years. It was psychological torture constantly thinking I was causing this through my own actions in some way.
All I was ever offered was topical steroid creams. If one didn’t help then another was prescribed, usually stronger. Nothing natural worked. Over this time I had quiet moments, especially around the pregnancies of my three children, but my skin remained an issue and would often break out into patches of what I thought was eczema on my face or various other parts of my body. Somehow I managed to keep it under control without resorting to highly potent creams.
Just over five years ago I did some research on eczema and found information stating people can become addicted to the steroid creams. I stopped cold turkey, but due to lack of information available, was so totally frightened by the terrible withdrawal symptoms I suffered I decided to wean myself off slowly instead. I ended up on antibiotics and steroid cream to bring it back under control. Until 12 months ago, I thought I’d managed to wean myself off.
I had used a moderately potent steroid cream, mainly Betnovate .02% cream on and off for 30 plus years. I also used stronger creams like Diprosone and Elecon for short periods and was given one oral dose of Prednisone.
After several quiet months and using little of the creams at all, I started getting eczema again. I got increasingly frustrated when some spots on my legs and arms were not healing even with the help of the creams. A Doctor I saw who did not know nor ask about my history prescribed me script after script of Betnovate. Not once did he mention the dangers of long term use. I was adamant I was not going to get any stronger creams, so did some more research. This time I found Kelly’s site www.addictedskin.com , emailed Dr. Rapaport and ceased using ALL topical steroid creams on October 25th 2011. Here follows what happened.
First the red burning skin with severe chills, crying and feeling like giving up. Unable to function or get out of bed for the first three weeks, and unable to leave the house except for dropping off kids at activities for about 6 weeks. No desire to socialise and very tired when attempting to. Unable to wear clothing comfortably except for a sarong. I did offer my Doctor the articles by Dr. Rapaport to read, but she never got back to me. That was very disappointing and I have not seen any Doctors since. The first 4-5 months my mind was totally preoccupied by my skin. At the end of the first 3 months my feet were unbearable with pins and needles and I needed medication so I could concentrate on daily chores.
The above photo was taken three weeks into withdrawal. This was the state of my skin from top to toe at this time. I also had severe chills lots of clear but foul smelling fluid oozing and an incredible itch. Sleep was very difficult and when I finally was able to get some sleep, on several occasions felt like I did not want to wake up. I took paracetamol and antihistamines for a little relief.
The above pictures were taken 19 Jan (left) and 27 Jan (Right). The pictures really don’t convey what the skin is feeling like underneath at this stage. The skin was also more red than the photo shows.
Other symptoms Included ear oozing fluid, loss of about 2/3rds of my hair swelling of ankles and at times depression. Severe pins and needle type sensations in my feet along with stabbing pains in anylesions. Hot showers which were once soothing became a time of torture and the only cream my skin could tolerate was Vaseleine Petroleum jelly. I was incredibly uncomfortable and felt very unattractive
The above left photo was taken on 23rd February and the one on the right 2ndApril. The picture below was also taken on 02 April. Obvious improvements, but still a lot more healing to be done.
Well, here I am 6 months later, finally feeling like I have my life back. Finally feeling like I can get through a day without tears and finally able to go to bed without apprehension about what the darkness of night holds. The itch is about 10 percent of what it was and most of my skin feels normal. In fact a lot of my skin feels better than it has for many many years. I still have eczema like rashes on the insides of both my arms and thighs and my feet and ankles still cause me the most distress. I am at least walking properly again thank goodness, but still have pain in my ankles, both skin and muscles. My face has been very good, but just the last few days has become a little spotty again, perhaps another good sign, who knows. I am now doing all my normal daily activities and feel much much better emotionally. I still itch several times a day and I still sweep the floor beside my bed daily because of excessive skin loss.
I have always had a well balanced healthy diet, so I did not make any changes throughout this time, except for increasing water, fruit and vegetable intake. And I have taken vitamin B supplements. I am now eating as I always have and have found alcohol in moderation to have no adverse effects on my skin.
I have not a moment of regret (except for the loss of valuable time with my children) for choosing to go through this even though it has been an absolute living hell at times. Being off steroid creams for the rest of my life and finally feeling free of any guilt I carried due to feeling in some way responsible for my skin issues is a huge reward.I thank my family and friends so much for seeing me through this and allowing me the time to heal.
Topical Steroid Withdrawal is a very difficult process. Explaining it to people can be tyring and frustrating because the appearance of our skin is only half the story. The level of pain, itching and discomfort which can go on for months at a time, can only really be understood by those who have experienced it or had the unfortunate experience of watching someone close go through it on a daily/nightly basis. For this reason the forum on Kelly’s site is invaluable because this is where you will meet such people and receive the support to keep on going when you would so much love to give up. For this a huge thankyou to Kelly for starting her website and allowing us access to such important information. And of course Dr Rapaport who has gone out on a limb to acknowledge the damage being caused by these drugs.
I hope somehow my story might help someone else in a similar situation and I hope that the medical community will one day stop denying the terrible truth about the over prescribing of topical steroids.
Eczema itches, stings, flakes and weeps, but it should not burn.
Therefore, if someone has an eczema-like rash and it is burning, it may not be eczema, it may be steroid cream addiction.
I first heard this on a teleconference on corticosteroid addiction with Dr Rapaport MD, an expert in this subject, who has treated over 2000 people with steroid cream addiction. When I heard him talking about the fact that eczema does not burn, it was like the penny dropped and the scales fell from my eyes. it was the first time that I realised that this fine red rash covering my body was not eczema at all. it was Red Skin Syndrome. I recalled the eczema I had as a child. He was right. It never burned. Yet now, after years of steroid use, my skin burned, oh boy, did it burn! It burned every time I tried to stop the steroid creams for a day or two. It burned if I tried to use an emollient on my skin instead of a steroid, and the weird thing was that I never made the connection in my head and thought that there was anything odd about my "eczema".
Of course, realising what is wrong is one thing. Dealing with it is another. Once I stopped the steroid creams the burning started big time. The burning reaction varies depending on the potency of steroids used on the skin and the duration, but it is always nasty. Within two or three days of stopping the steroid creams, my face felt as if it was on fire. The skin was bright red and hot to the touch. this is caused by the fact that the blood vessels in the skin have been suppressed for so long and can finally "run free". This causes some vessels to almost double in size as the excess nitric oxide in the blood dilates them, causing the skin to redden considerably.
In my case, the burning lasted for about two months and then started to subside. Thankfully, now I have been off the creams for five months, burning is no longer an issue for me. I think it is one of the most intense initial symptoms, but also one of the first to go. if you google the term "steroid rebound", you will find a lot of information about the burning associated with steroid withdrawal. it is the reason that many decide to taper off steroid gradually, rather than quitting cold turkey, but that is a decision for the individual to make.
Here is a picture of my burning skin, taken very early on in withdrawals:
And here are some pictures of others with burning skin due to corticosteroid withdrawal:
Here is a quote from a medical article by Betsy Bates in 2003:
"Dr. Rapaport, who confessed he is "fairly passionate about this subject," believes dermatologists are too quick to prescribe superpotent corticosteroids and to dismiss as "crazy" patients who develop a classic pattern of symptoms that include burning sensations that may seem disproportionate to clinically apparent skin findings.
He described 100 patients who presented with a consistent pattern of clinical symptoms after having been treated with corticosteroids for 2 months to 40 years, often by a series of physicians who prescribed increasingly potent formulations when symptoms failed to resolve. In these patients, many of whom are atopic, a chronic eczematoid rash is accompanied by what he termed "fierce burning."The rash may appear in odd locations, and it does not worsen with wind, dry winter weather, or harsh soaps."
And here are some comments from the members of the Google forum:
"I'm experiencing burning on my face and neck for the first time since August this week. The back of my neck is particularly bad. The weird thing is that the skin looks practically normal, despite the feeling like there's a blowtorch on it. Hardly any oozing either. Dr Rap describes this in his paper - disproportional burning in relation to how it looks."
"The burning skin seems to start getting more intense from 4pm each day. The nights can find me burning up so much on neck arms shoulders that lying down becomes unworkable - requires even more antihistamines and valium before relief comes."
"I tolerated the burning better as it eased up in my baths. I also got relief for the burning from ice and tylenol and rest. Most of my burning is now in 7th month, is gone and it is the rashes, oozing, red bumps on my stomach and arms and insane itching."
Therefore, I repeat what I said at the beginning: Burning skin may be a sign of steroid cream addiction rather than a symptom of regular eczema.
Look up any article online about the side effects of steroid creams and you will find the word "Atrophy" features rather prominently.
The dictionary definition of atrophy is:
"To waste away, wither, or deteriorate"
Here is a picture of how it affected me:
As you can see in the picture, the skin on my arm was tight and stretched, with no elasticity.
Atrophy can occur when someone is using strong steroids on a part of the body for a prolonged period of time, but interestingly, it can also occur once someone has stopped using steroids, which was true in my case. During the rebound phenomenon, it is common for areas of skin to atrophy, which makes the skin look older than it is. This has a shocking efect when it occurs in young children, as it can them look old.
Here are some more images of steroid induced atrophy in other people going through withdrawal:
Here are some comments that people withdrawing from steroid creams have made about atrophy (Taken from Google Support Group)::
"...the atrophy shows up AFTER discontinuing steroids. While the skin is on steroids it is still benefiting somewhat from the anti-inflammatory effect of the TS. Then after the skin is in withdrawal, it becomes inflamed, dry, less healthy, loses elasticity, etc. The atrophy definitely reverses itself. I have seen it in my own body. It just takes time. Scratching makes the atrophy worse because the skin thickens and then the atrophy/wrinkles look worse. "
"Yes **** got the atrophy after stopping steroids, a 7 year old boy with the hands and feet of a elephant. And an elderly one at that! That is slow getting better, but ****'s hands are now normal shaped. "
" Now that most of my swelling has gone down, I am left with loose skin around my knees, around my ankles and a little on my elbows and knuckles (I still cannot get any of my rings over my knuckles). I am wondering if my skin will every "tighten up" again or has it been permanently streched and lost its elasticity? (I hope not because it is really unsightly!)"
Atrophy is one of the many unpleasant symptoms of both steroid addiction and steroid withdrawal. Now that I have been off the creams for 5 months, my skin has a lot more elasticity and it seems that the atrophy does reverse iteself eventually upon complete cessation of steroid creams. Therefore atrophy is not a permanent side effect of corticosteroid use.
OK, so I finally got round to posting some photos, despite the fact that I am super busy running round after 2 kids with chickenpox! I thought that it would be a good idea to do some before and after pictures to show the recent improvement:
Before:
You can see how sore and red I was on this photo. I look like a tomato!
After:
I took this one a couple of minutes ago. My face is returning to its normal colour and looks a lot less sore. I used lots of strong steroids on my face over a long period of time, so it will take for my skin to return to normal, but I am pretty happy with the results so far (5 months in), and I am not too self concious about my face anymore.
Before:
This wet wound on my calf has been a real nuisance. It has been oozing for months now and I have treated it with moist wound healing methods of vaseline and dressings which I change frequently. After:
This is the same leg today. Have to dress the area frequently, but it is a lot better than it was!
Before:
Crusty leg. Not pleasant!
After:
The same leg today. A little red, but no dryness and good flexibility. A big improvement!
Hopefully these pictures show that there is light at the end of the tunnel. Improvement seems slow and is often likened to watching hair grow, but it DOES happen. Every time I post a photo it is so much better than the last. I can't wait to post one of me with perfect skin!
At around age 10 she had typical kids eczema in her elbows and knees. This was treated with TSC. She used mid strength tsc very sparingly often and then daily for about 30 of her 40 years, with a few breaks along the way. She didn't use the super potent creams, didn't have the terrrible dramatic side effects that other people have had and hadn't seen a dermatologist for the last ten years as she felt they never had anything to offer. Her skin condition gradually declined to a point where I thought she looked like a junkie.
At age 39 she looked very old. Most of her skin was either very thin or very thick from scratching and overall she was in very bad condtion with extensive eczema. There was no moisture in her skin but some parts had an unusual gloss appearance. Her skin was also very dark. She had a bunch of other problems too, such as itchy eyes, an irritable bowel and no energy. She did a couple of withdrawals along the way but never realized what the problem really was so came back to the cream when she was itchy.
Jan 1st 2011 she quit the tsc cold turkey. Her face became very swollen and she spent the next few months red, swollen, defoliating and looking and feeling like she was about to die. For most of last year she was as itchy as hell. She tried to get help from a dermatoligst but the derm tried to deceive her into taking steroid cream again, by calling it something else. We complained to AHPRA (the Australian health board) and AHPRA supported the derm. We didn't find any help what so ever from our doctors or our medical system.
Most of last year was pretty miserable for her, with a few breaks along the way. From about the six month mark, there was a gradual improvement which I could see, but she couldn't see it. Her legs were the first area to come good, going from having extremely thin skin possibly with ichthiosis and a strange gloss appearance to having beautiful, soft, oily skin, although the eczema behind her knees came and went a few times.
Her legs cured last year and this year the good skin worked its way up her back and then around her sides and then to the front of her torso. The good skin continued a path up to her shoulders and then down her arms. Her face hardly ever let up last year, continously going through cycles. For some reason, her feet were never affected by the cream or the withdrawal.
She now has soft, oily, skin on 98% of her body. She has no eczema. In the last month or so, her face seems to be close to cured, although it is still a little red and dark. Her eyes stopped being swollen, and her neck, which had very thick skin from years of scratching, seems to have come good too, although also still a little red and dark. The rest of her skin is now a natural light tone. The orange face which she had for a while last year is definately a thing of the past.
The only part not cured yet is on her arms from her elbows to her finger tips. The skin here is now soft and oily but still doesn't look good yet. The cured areas have worked there way around her body in a sytematic way so it's obvious that her forearms and fingers will be cured soon too.
The itchiness now is 2% of what it was last year. I occasionally see her scratching her forearms. There's none of the hypnotic scratching that I saw last year. She seems to have her energy back, the ithcy eyes cured as soon as she stopped using the cream as did the irritable bowel. She has no eczema and is covered in beautiful, soft, oily healthy skin. She has no memory of ever having beautiful skin like this before.
Hopefully the end to this nightmare is only a couple of months away but I'll have to wait and see.
Apart from the pain, embarrassment and itchiness she suffered for most of last year, the depression was endless. Friends and family don't take the withdrawal seriously because they've never heard of it and the doctors have an agenda which doesn't include your welfare. There's no way they want to be involved in this withdrawal nightmare.
For most of last year, we wondered if there really was an end to this nightmare, but everything doctors Rapaport and Fukaya have written about has come true. Being brave enough to start the withdrawal and not give in to the cream was definately the best decision she could have made.
She's tried different things along the way to try to make the withdrawal a bit kinder but basically time seems to be the only thing that she really needed. Dr Fukaya wrote to us that doctors couldn't do much to help her and that it was just a matter of time.
Having said that, this year she found that sea water has been very helpful, but where I live the sharks are almost as dangerous as the dermatologists.
She's found long cotton 'arm sleaves' (driving gloves without the hands) have been helpful to keep the air off her arms and the same with a cotton scarf. She's spent hours in the bath soaking in pine tar or vinegar. She tried accupuncture but this was definatley a waste of money. She's tried a bunch of anti itch creams during the withdrawal but never found a magic solution to the uncontrollable itchiness. A good distraction (ipod games) have been the best solution to the itchiness.
So I think that just about covers it. For those of you who are going through a really tough time at the moment, hopefully this gives you a bit of inspiration. There is definately a happy end to this nightmare but how long it will take is anyones guess.
My skin is looking great lately, the best it has been so far! I can't wait to post some improvement photos but I have been really busy this week as the kids have been off school and my poor daughter has come down with chickenpox! I will post some soon though.
Many people in the google group who stopped steroid creams around October of last year are now experiencing huge improvements in their skin condition. This would indicate that at around 6 months of withdrawal, the skin improves dramatically. Obviously this is not an exact figure, as there are many factors to take into account such as the potency of the steroid cream used, frequency and duration of application and whether oral steroids were used, but the feedback we are getting at the moment is very encouraging.
I also found a great online article that indicated that children withdrawing from steroids heal even quicker than the adults. I think this must be due to the fact that they have not had years of steroid use. Some are reported to have healed in as little as 4-8 weeks, although our group members with kids say that they saw an improvement at around 4 months. I am still shocked that dermatologists push these creams on babies, as the article showed that 54% of the children in the study had developed steroid roseacea even on the lowest strength steroids, which would seem to indicate that roughly half of kids using "safe" hydrocortisone creams may get addicted to them.
Well, quite a lot, it would seem, when the subject is Topical Steroid Withdrawal.
Ever since I stopped using steroid creams, I have scoured the Internet for the best and most informative articles on the subject. There is an overwhelming wealth of information out there connecting the overuse of steroid creams with familiar symptoms such as burning, oozing, flaking, chills, itching and red skin.
There is one problem though.
There does not seem to be a universally agreed title or name for this condition.
When I first scoured the web for information about steroid damage, one of the fist articles I found was a Wikipedia article about Steroid Rosacea. It didn't take me long to conclude that this was the condition I had, as the description matched me and my symptoms perfectly.
It was not long after finding this article that I changed my google search term to "steroid rosacea" in order to find more information. It was this search that lead me to find Kelly Palace's site about addicted skin. The articles on her site by Dr Marvin Rapaport MD refer to the condition as "Red Skin Syndrome", although another of his articles calls it "Red Face Syndrome".
Articles by Dr Mototsugu Fukaya describe this condition simply as "Steroid Addiction", and other Japanese articles call it "steroid induced AD (atopic dermatitis).
Google "steroid rebound" or "rebound effect" and you will find loads of articles describing how the skin flares up once steroid medication is stopped.
Perioral Dematitis is a facial skin eruption caused by addiction to topical corticosteroids but is confined initially to the facial area. The term can also be used interchangeably with "Rosacea-like dermatitis".
Other online articles call the condition: Tortured Tube Syndrome
TSDF Topical Steroid Damaged Face
TSW Topical Steroid Withdrawal
TSA Topical Steroid Addiction
Steroid Induced Eczema
Corticosteroid Addiction
Clearly then, there are a lot of names for this distressing condition! A lot of information can be found online by googling these individual terms, but many agree that it would be best to have one single recognised name to describe addiction to steroid creams. Currently "Red Skin Syndrome" is the favourite amongst the google group members, although "Steroid Rosacea" is more likely to be understood by doctors and dermatologists.
No doubt I will find more terms for this condition as time goes on, so I may add to this post in the future!
Flares have an unpredictable nature. After yesterday, I thought I was in for a bad patch, but I woke up today feeling OK. I just never know how my skin will be from one day to the next.
I managed to have a pretty normal day and visit family and the local garden centre. I've been researching steroid creams on the Internet and come up with lots of interesting information that I plan to share. I also found two new blogs during my search, written by people in Hong Kong who are going through the same as me and searching for answers, so I have added their blogs to my list on the right side of the page.
The answers are out there, but dotted all over the Internet. I feel like I am trying to decode something major by piecing together all of the bits of information available. Opinion varies widely. One article I found (likely funded by a major pharmaceutical company), described steroids as the "gold standard" for treating eczema in children. They based their studies on short term observations of kids using steroids. This research is obviously limited, as the real damage is done over time, years and maybe decades of use. I have used them long term and have a much more accurate picture of what they can do.
Hopefully, the truth will come out and become mainstream as more people discover the damage that long term, uncontrolled use of steroids can do to the skin.
Today I had another flare, I think it is flare number 8, but I lose count! My skin had been doing really well up to this point, I didn't think it would flare like this again.
I woke up several times in the night with a soaking wet neck. It was very uncomfortable and made it hard to sleep. I know I scratched like crazy in the night.
When I woke up, the bed was so full of dead skin flakes, that we had to strip the bed and wash everything, as well as hoovering the floor, which was also covered in flakes.
My face is slightly blotchy with a bit of yellow crusting on my chin. There is ooze on my hair and behind my ears.
My neck is dry and papery and hard to move. When I scratch the itch, water comes out of my skin.
My torso and back are OK, as are the tops of my arms.
My arms are very sore and red from my elbows to wrists. it is mainly scratch damage. Some areas look atrophied and it is hard to stretch my arms.
My legs are bad again. The wet wounds that were almost gone have all opened up again and pouring yellow ooze. I have a wound on each calf and also one behind my leg. I am trying to treat them with dressings, but have to change them often as the ooze keeps seeping through.
I am very depressed. I sat on the stairs crying this morning, wondering how much longer it is going to be like this. Emotionally, I feel utterly drained, similar to the way you feel when you are grieving. Tears flow easily, but the stress makes me itch more.
I was due to give a 5 minute presentation at a meeting this evening, but chickened out on account of how my skin looked. And I said a few days ago that I wasn't going to let it stop me doing anything anymore.
I know this flare will pass, and hope it is soon. I think that flares are just the skin healing itself and with each flare comes more healing.
Topical steroid withdrawal sure has highs and lows.....I'm sure I will be back to my cheerful self in a few days.
I found a bottle of Doublebase gel in the cupboard that I had forgotten about.
I had always had mixed success with this product. It is a white gel non steroidal emollient in a pump dispenser. I always found in the past that when I used it, I would be fine for a week or so and then develop a reaction to it. In hindsight, I wonder whether it was because I would decrease steroid use when I used the Doublebase, which would then fuel a rebound flare. Of course I knew nothing about Red Skin Syndrome at the time, so always thought my skin was reacting badly to the gel. It has been the same story with all other emollient creams. I would increase the emollient with the hope of decreasing the steroid, have limited success and then my skin would flare and I would blame the emollient.
Now I have been off the steroid creams for nearly 5 months, I decided to try the Doublebase again and give it a proper chance. I don't know whether my skin will react or not, as topical steroid withdrawal can cause hypersensitivity in the skin.
Anyway, so far so good. I used the Doublebase last night and this morning and the skin seems to be taking it well. I hope it works because I like the consistency of the gel and it is non greasy, so you can put clothes on straight afterwards. My skin gets very dry lately, so a reliable emollient is really important to keep the skin comfortable and keep the skin barrier strong.
I love searching the Internet for articles about topical steroids and their adverse effects. Many of the articles that I find will be printed on the new ITSAN site when it goes live, as a one-stop resource for all steroid addiction related information.
In the meantime, I have to share this amazing article that I found today:
The article is about the damage that steroid creams cause to the skin. The statistics mentioned in the article are truly shocking. For example, the article states that:
" In Canada and the United States, topical corticosteroids are classified according to their strength from very low to very high potency; very high–potency compounds are approximately 1000 times more potent than hydrocortisone. In general, as we move from lotion to cream to ointment, the potency of corticosteroids increases."
1000 times! The mind boggles! This is strong stuff they are prescribing. No wonder our skin gets addicted!
The article also states that:
"General skin atrophy consists of a reduction in epidermal and dermal thickness, regression of the sebaceous glands, subcutaneous fat loss, and muscle-layer atrophy. These changes are typically observed following 2 to 3 weeks of moderate- to high-potency topical corticosteroid use.A single application of a very potent topical steroid can cause an ultrasonographically detectable decrease in skin thickness that lasts up to 3 days. Even low-potency topical steroids can cause slight skin atrophy that often reverses upon discontinuation of the drugs. Atrophy and striae are of concern on areas of the skin with high permeability, such as the face and intertriginous areas, but these adverse events can occur anywhere, especially after long-term use of moderate- or high-potency topical corticosteroids. While mild atrophy and telangiectasia might be reversible upon discontinuation of corticosteroids,overtly visible changes in skin texture and striae are considered permanent manifestations of corticosteroid-induced atrophy and are resistant to treatment."
I was shocked that a single application of potent steroid could thin the skin for 3 days. Imagine what damage using it daily would cause.
This article, and those like it, that I continue to find, PROVE that steroids are powerful drugs, which are over prescribed by doctors seeking a quick fix for skin problems without considering the long term implications. Drugs like these are daily prescribed to babies and young children, with repeat prescriptions doled out without any questions. Steroid creams are supposed to be for short term use only (5 days or less), but are often over prescribed.
My worry is, that as the skin gets more reliant on stronger steroids to produce any effect, how strong can these creams potentially get?
My skin is doing OK. I think the oozing on my neck is letting up a bit, which is a relief, and the weeping patches on my legs haven't needed dressings on them for a couple of days now.
The skin is tolerable, but still has a long way to go before it looks normal. I am still leaving a flaky trail of dead skin wherever I go and have to hoover all the time, otherwise the house would look like a ski resort.
I'm sticking to my routine of using Skin MD, Salcura Dermaspray and Body Shop hemp cream to moisturise the driest areas, but trying to use as little cream as I can, as I don't want to provoke a skin reaction. I use a generic OTC antihistamine at night to prevent me itching, and wear socks over my hands so that I don't scratch. I bath in epsom salts every couple of days, which helps with the turnover of new skin and is very soothing. I drink gallons of dandelion and burdock tea, but usually switch to chamomile and valerian tea at bedtime to help me sleep better. I try and eat healthily, but don't restrict myself or deny myself treats. I don't tend to bother with alcohol, as it has always caused me a bad skin reaction, so I tend to avoid it out of habit.
As for day to day activities, I am back to normal now and able to do everything I used to do before withdrawals.
Life is getting back on track. I wish I looked as good as I felt, but I know that I will soon.
I've been pretty busy the last few days entertaining the kids during the Easter holidays.
We have been to the chocolate factory, the shops and today, the local zoo. My skin has not stopped me doing anything!
I feel great, with bags of energy. My skin is "getting there" slowly and surely.
The steroid creams are well and truly history. I can't imagine ever going back to using them again.
The google group is full of happy success stories of people who have healed since coming off the steroids and have better skin than ever. new blogs are popping up everywhere as others, like me, are inspired to share their stories of a cure for steroid induced eczema. Please check out the reading list links on the right hand side of the page.
“Look at these funny spots on my cheek,” I said to my partner, “they’ve been there for two weeks now.” It was a small cluster of tiny red spots on one side of my face. I was mildly perturbed, kept an eye on them. Then a few days later I woke to swollen cheeks covered in red, pustular pimples. Now I was worried. I made an appointment with my dermatologist for the next afternoon. She told me it was steroid-induced rosacea.
“But, I don’t put elocon on my face,” I told her, “never have.” I knew how risky that was.
“You probably had it on your fingertips from using it elsewhere,” she said, “then touched your face.”
I wasn’t convinced. I had hardly used elocon in the preceding weeks. A month or two prior I’d had eczema on the back of my legs that I just couldn’t shake with the elocon. My dermatologist told me I was being too conservative with the steroid cream. “Use it more thickly, give it a good coverage,” she had said. I had always been told not to overuse it, so I was a little confused. However, I did as she said and, once my legs showed some improvement, I lightened up on the steroids. So I knew that I’d hardly used any in the weeks leading up to the facial rash. I went home and resolved not to use elocon at all, anywhere. Within a month, I was back at the dermatologist’s office. My face, neck, forearms and hands were bright red, swollen and itchy. I was distressed. I was going through topical steroid withdrawal. I had Red Skin Syndrome. But neither of us knew it at the time. I begged for a course of prednisone. She obliged.
I had five blissful days of clear skin. Then, as I tapered off the medication, my neck started to get red and itchy again. And my face. And my arms. And my hands. I stopped the prednisone and the next day (day two of steroid withdrawal) my face was burning hot and had starting weeping an oozy, yellow liquid. My eyes were swollen, my stomach was itchy, my legs were getting itchy behind my knees. By day 3, my armpits were hot, red and sore to touch. By day five, I had red, hot, itchy skin all over my body and yellow ooze all over my face, neck and arms. I had oedema in my hands and arms.
By day seven, I had found Peter’s website and Kelly’s website and had read Dr Rapaport’s articles. I had Red Skin Syndrome and I knew it. I went back to the dermatologist (what was I thinking?). I took a copy of Dr Rapaport’s latest article with me. Guess what? She said there was no such thing as steroid addiction (even though she believed in steroid-induced rosacea) and she definitely didn’t want to read the article. She tried to give it back to me but I insisted on leaving it with her. She said that I either had a condition called pityriasis rosacea (looks nothing like Red Skin Syndrome) or I was having an allergic reaction to a medication I was taking at the time. She wrapped my arms in zinc bandages and told me to come back in four days to have them changed. I never went back.
The next three months were hell. I developed severe oedema in my legs and feet, was largely bedridden, certainly didn’t leave my house in that time (couldn’t wear shoes, let alone any clothes other than a sarong and old t-shirt). My skin exuded, burned, flaked and itched. I shivered uncontrollably. My lymph nodes grew to the size of grapes. My legs ached, it was painful to walk. I looked a mess. I was a mess.I cried. A lot. 15th August 2011
I would not have been able to endure this terrible time without the support of the google group “Cure Eczema by Stopping Steroids”. I checked into this group daily and drew enormous support from others going through the same nightmare as me. I kept a diary of my progress (although, for a long time it didn’t feel like progress). This is what I wrote on day 95 (more than three months after ceasing steroids):
Face is mostly clear, gets blotchy at times, particularly after a shower. Cheeks are good, chin and forehead get very flaky some days. Neck still gets very dry and itchy, have to moisturise it once or twice throughout the night to stop myself from scratching at it. Arms cycle through being very dry, smooth and itchy. They sting when scratched. Legs still get very itchy and weep clear fluid when scratched. Ankles are still thick and swollen and get very itchy. Feet still very red, deep fissures around toes. Hands still very, very ugly – toad skin, get very itchy at night and weep, fingers swollen and sore between digits. Torso minimally affected – red, dry and mildly itchy. Don’t feel like I have made much progress for weeks – just keep going through the cycle of red, dry, flake, smooth, pink, etc. Am still essentially housebound. I go out to pick up the boys from school and can manage to stop at the supermarket for a short trip but always keen to get back home and into more comfortable clothing. Get too itchy if have to limit Vaseline use. Days are still very unproductive.
25th September 2011
In months four and five, the oedema slowly receded, the weeping eventually stopped and I was left mainly with itchiness to deal with and perpetually pink skin. Thankfully, my energy levels returned and I started to get active again and enjoy life.
It is now eight months since I ceased using steroids and my skin is finally showing signs of recovering from topical steroid abuse. It has its normal colour back most of the time, some areas are still dry and get itchy occasionally. The skin on my legs and feet is still damaged from daily scratching but is healing slowly.
Red Skin Syndrome is an awful and completely preventable condition that has not only affected my skin, but my whole life and that of my loved ones. It has taken me to the darkest depths of despair but also taught me to be patient and persevere. The healing process is a slow and painful one, but thankfully, a successful one for those who can endure it.
I have a little boy, a very typical little 8 year old boy, who loves Football, Star Wars, any joke involving gross bodily functions and Mario Kart.
What was not quite so typical, was his appearance in October 2011.
My boy was a scarlet red all over his entire body (with the exception of the palm of his hands that remained glaringly white) the skin of his neck had gone and you could see what I assumed to be the capillaries underneath.
Sections of his body were bleeding....weeping, but never scabbing. His hands and ankles were swollen, and his eyes were puffy.
Sometimes the redness would go mottled, which frightened me. All his lymph nodes were up over his whole poor ravaged little body.
He could not walk. He could not even turn his head. He could barely eat as opening his mouth became too difficult and his ears hurt constantly.
He shivered no matter how hot the house was, I could walk around in shorts and a t-shirt and the poor boy would be swaddled on the sofa under blankets.
The weeping some days was unreal, it would literally run off him, sometimes so much around his eyes he could barely even see.
Now reading that I guess the assumption must be that my boy must have been ill? perhaps you would think to look at him he had been badly burnt?
Well what would you say if I said that the dermatologists considered that my son just had 'Eczema'. Incurable, extensive, badly managed Eczema?
What my son had, was not Eczema, it was Red Skin Syndrome.
I guess our story has been a typical one for many patients with Red Skin Syndrome, my son was diagnosed with Eczema under a year old, it was no big deal, we were prescribed various emollients, and a tube of 1% hydro-cortisone, we had various allergy tests done, we saw dieticians, nothing showed up, and using the hydro cortisone the eczema went away beautifully.
Then over the next few years, the eczema was always there in the background but never an issue, by the time he was 3, the 1% was no longer strong enough and we moved on to 2.5%, always stepping up and stepping down diligently, as we were taught. Again the eczema was well controlled, not an issue, not a problem. Perhaps I spent more time with him than I did with my daughter, the whole bath/cream/dress thing took a bit longer, it may have been inconvenient but not an issue. By the time he was 5 again the eczema was becoming harder to control so we stepped up again, and then when he was 7, we stepped up again.
By March 2011 something was clearly wrong. No matter how much of the steroid cream I used, nothing would clear it, I think at this time we were using betnovate and eumovate, and still the eczema was spreading and getting worse. My son was cold all the time and the lymph nodes became enlarged. I went back to the doctor in a panic, and this time we were prescribed our first course of prednisilone, I didn’t want him to have this but the GP assured me it was the best way, and that they would arrange for me to revisit my dermatologist.
Between then and September 2011, my son had 4 tapering courses of prednisilone, we were prescribed more steroids, we kept going back to the dermo's by this point I was begging for help, I would sit and cry in the doctors office. About this time the dermo's decided that perhaps they would try the immuno suppressant drugs, and I came home with a tube of pro topic but I was uneasy. I asked repeatedly if my son may have developed an allergy to the steroids, as I was beginning to make the association between the increase of steroid use and his deteriorating condition. I was told I being ridiculous, it was unheard of, that it must have been my fault, I wasn’t using the steroids correctly, I wasn’t using enough. Instinctively I knew something was amiss, I cried myself to sleep at night scared that he had some kind of awful undiagnosed illness.
In that September I decided enough was enough and stopped all Steroid use, we tapered down our last course of prednisilone, and my husband and I decided from that day onwards we were going to try and keep away from the steroids just to try and see how my son would be without the use of any kind of steroids.
At some point soon after I stumbled across Kelly Palace's website, with the links to Dr. Rapaport's research, and it was a real Eureka moment, it was a massive relief for me to see that actually my boy wasn't ill, he was just going through topical steroid withdrawal and addiction.
Thankfully the support of Kelly Palace and the support group was invaluable, however it has left me angry that this syndrome is not widely acknowledged. I only had one dermo even admit that it existed and even then she said that my son could not be suffering with it as it is so rare.
And therein is the rub, I don't think actually it is rare. I think it is far more widespread than the medical community can recognise, and until more forward thinking and enlightened Doctors recognise this, there will be more people suffering with 'incurable' Eczema.
I currently live in California, I’m 59 years old, and I’m in good health besides my skin problems.
1. My steroid & allergy history:
I never had allergies that I was aware of until I lived in Central America from 1977-1979. During that time, I developed allergic rhinitis and I often had a stuffy, runny nose, couldn’t breathe, etc., probably due to the tropical foliage and lots of dust and chemicals I was working with in a small town of weavers.
When I returned home to New York, my allergies decreased but continued somewhat. In about 1984, I started having itchy, scaly eyelids and I went to my uncle, an ophthalmologist. He gave me a tube of cream without telling me what it was, and I used it and it magically made my eyelids improve. It was betamethasone valerate, a steroid. I used it on and off for a few years, but not that often.
In 1987, I moved to California & my allergies went wild again. When I was pregnant with my first child in 1989, I could hardly breathe because my sinuses were so clogged, and I was having some asthma-type wheezing. I went to an allergy doctor who gave me a steroid inhaler for my allergies, called Beconase. He told me it was perfectly safe and I could use it forever with no side effects. It worked miraculously well and my allergy symptoms all cleared up. My son was born in 1990, and I’ve been using similar types of
steroid inhalers for allergies, daily since then.
I went through a course of allergy shots from 1995-1997, but they didn’t improve my allergies at all.
I continued to have itchy eyelids and, in about 1998, I went to my local ophthalmologist and she gave me FML - a steroid ointment made specially for the eyes. I don’t know how strong it is compared to other
steroids.
She also gave me non-steroidal eyedrops called Patanol, which I’ve used continually since then.
I used the steroid cream it for a few months, then I went back to her and she told me I shouldn’t use it so long, but gave me no other recommendations other than that I should see a dermatologist. She acted as if
using it for a few weeks should be enough to make it go away permanently, which of course it wasn’t.
I went to see the derm. she recommended and all she did was offer more steroid creams & ointments. I rejected her suggestions and kept using the opthalmologist’s ointment on and off, as well as the Patanol.
Also in about 1998, I started feeling itchy in other parts of my body. At that point, I avoided using steroids on my skin apart from my eyelids and the itchiness came & went. I can’t remember what I did for it, other than scratching and maybe moisturizing.
At the end of the summer in 2006, I suddenly became torturously itchy (maybe from the heat and sweat) all over my back and I scratched myself so much that it became very red and scary-looking (nothing compared to what I’m experiencing now, though). I couldn’t take it and I went to my dermatologist (who, up until then, I had been going to only for skin cancer checks, and ignoring her steroid advice). She prescribed some strong type of steroid cream, which I used for about a week and it didn’t work.
I then went to a new allergist recommended by a friend. To make a long story short, he convinced me low-strength steroid creams were totally harmless and I started using 1% hydrocortisone ointment regularly.
After a couple of weeks, my back stopped itching and I switched from steroids to Aveeno moisturizer every day. That problem didn’t come back. But I continued to have problems with my eyelids, wrists, a couple of places between my fingers, sometimes under my breasts or on my shoulders. Since my allergist assured me it was safe, I was using the hydrocortisone ointment almost every day on my eyelids, wrists or some other little area on my face or shoulders. I alternated between .5% OTC, 1% OTC & a prescription 2 ½%. I used these every 2 or 3 days for the past 5 years.
About 2 years ago, I started having more asthma symptoms & yet another allergist put me on Asmanex, a cortico-steroid inhaler for asthma, which I’ve been using regularly since then.
After that, I went through another 2-year course of allergy shots, which ended approximately last July. I didn’t see any improvement at all to my allergies, eczema or asthma, $2,000.00+ later.
This past summer, the eczema was getting worse, and I was using the 2 ½% more and more. I also occasionally used some Betamethasone Valerate that I had left over from years ago from my uncle or Betamethasone Propionate that my allergist gave me. Although my allergy doctor always recommended that I hit it hard with strong enough stuff to make it totally go away, I was always somewhat afraid of the steroids and never used it enough for it to totally go away.
My allergy symptoms were also getting worse, even after the 2 years of allergy shots. I was still on the steroid inhalers but had a lot of breakthrough symptoms such as sinus problems, sneezing, etc.
2. Getting Off Steroids
At the beginning of October, 2011, I stopped using steroid cream. It was actually accidental, not really planned. My skin had been getting worse and I decided to try using aloe and some other products,
so I wasn't using the steroid creams for a few days. Suddenly my skin got much worse and it spread all over my arms. My arms became totally red. I thought it was too large an area to use steroid cream on, so I kept trying other stuff with no improvement. After about a week, I realized the worsening had coincided with the stopping of the cream. I thought maybe it was a rebound effect, so I googled steroid rebound and I found
an Australian website written by a guy name Peter about his wife in Australia. I found out about steroid withdrawal and I listened to Dr. Rappaport’s teleconference and read his articles.
I was heartened to understand what was happening to me and I made an appointment to see Dr. R in Beverly Hills on October 31st, at which time he confirmed my diagnosis.
This is not to say that the skin stuff has not become an all-encompassing horror. On October 10th, I went to consult with a homeopathic MD here in LA. He suggested I take a food-allergy blood test to see if that would help. In order to do this, I had to stay off my allergy & asthma steroid inhalers for 3 days. I didn’t think I could do it. Any time in the past that I had tried it, I immediately developed terrible allergy
symptoms. I thought I’d be very sick after the 3 days, but decided to do it in order to be able to take the blood test. Shockingly, nothing happened! I was off the steroid inhalers for 3 days, 6 days, 9 days and was barely having any breathing problems! I couldn’t believe it! After 22 years! My homeopathic MD calls the skin “the lungs inside out”. He thinks the suppression of skin symptoms with topical steroids caused the
problem to go inside and affect my lungs. Being off the topicals might be the cause of my improved asthma.
Towards the end of the 9 days, my allergy symptoms were bothering me again. I went back on the nasal inhaler, but not the asthma. As of today, I’ve been off the asthma steroids for almost 6 months with no asthma! I went back on the nasal but found I only need to use it once a week now, instead of every day.
3. My symptoms after 2 months of TSW (written in December, 2012):
Meanwhile, my skin is getting worse and worse, like everybody else’s. It itches A LOT, especially at night, and I can't sleep without some kind of sleeping pill. I have to fight so hard to keep from scratching my arms off, and they are terribly red, puffy & all cut up from my nails. Sometimes I feel depressed and anxious. The redness & itchiness is staring on my back and legs, areas that were not effected at first. My skin is so sensitive that I can barely wear a long-sleeve shirt even when it is quite cold. Luckily, I live in California. My husband likes to use flannel sheets in the winter (it does get somewhat cold here), but to me, soft cotton flannel feels like the roughest wool sweater. For the first few weeks, I couldn’t tolerate anything at all on my skin. At 2 months, I could use Vaseline and sometimes Aveeno Eczema Therapy. I also got a cream called Prean from Dr. Rappaport that works pretty well. My homeopathic doctor told me to mix it with 2 Essential Oils that are anti-inflammatory & I think they make it more tolerable. They are German Chamomile & Heliochrysum Italicum.
My eyes are totally puffy, red & irritated & sometimes other parts of my face are, too. I have cuts on my eyelids and around my eyes and mouth from scratching & rubbing.
My symptoms are:
Very swollen eyes
Lots of itching
Can't sleep because of the itching
Skin sometimes radiates heat/Sometimes I shiver with cold for no apparent
reason
Skin is very sensitive - sometimes even cotton shirts feel like sandpaper
Skin is leathery in a lot of areas - neck & arms mainly
Skin is very dry and flakes all over the place
Face and arms are sometimes red, but not always
Lots of cuts all over wrists & arms from insane scratching
Definite line where red stops between wrists & palms
Bad spots behind knees
Red spots on legs & little bumps
Totally preoccupied with my skin lately.
So, when I showed Dr. Rapaport & told him this, he basically said "YOU HAVE
STEROID WITHDRAWAL! STOP TRYING TO DIFFERENTIATE BETWEEN ONE SYMPTOM AND ANOTHER! Not everyone is exactly the same and you just have to be patient & get through it, and we're here to help you and hold your hand."
Right now I dread going to bed. It's so uncertain what will happen.You never know what's going to happen next. For example, one day I had a pretty good day without being too itchy and then, as soon as the sun went down, I started to itch and it continued all night.
I haven't had the leaking of fluid, but many other people have written about it, so this is also common. I can't keep myself from scratching myself bloody. I try not to, but it's an uncontrollable impulse.
The steroids do so much more damage to our bodies than I ever realized. I also noticed that my urine is darker and stronger than ever.I always drank a lot of water & my urine was usually clear. I think maybe the heat in my body is absorbing the water and so the urine is more concentrated. When I wake up in the morning, unlike in my normal past, I hardly have any pee waiting to come out.
I've been taking Ambien or Melatonin to sleep. They each have their pros & cons. I hate to use sleeping medication, but my nights are just too torturous without them. When I've taken Benadryl or Atarax, either
they don't work, or I wake up feeling emotionally weird (anxious).
I've been trying a few things like Ambien & Anti-histamines, and I find that when I take them I wake up depressed. Also, just looking into the black hole of how long this will take is quite depressing. Sometimes I don't itch during the day and I start feeling almost normal, and then suddenly the itching starts again and I plunge into despair. We have to keep in mind that this WILL end eventually and we will go back to normal.
My legs and back were uneffected at first and then suddenly they got all bumpy and sandpapery, also with some red blotches. I also agree about the intense itching. I keep myself from scratching all day sometimes, feeling happy that my skin is starting to heal, and then in 1/2 hour fit of itching I destroy it all over again and end up with new wounds and have to start all the healing from square one. (I was going to say "from scratch" but that was a painful metaphor I chose to avoid).
I've thought about itching and scratching a lot. It's really like an addiction. You tell yourself for hours that you're not going to scratch, and then suddenly you're itching and nothing in the world matters except SCRATCHING! You forget all your resolutions and even tell yourself excuses about why it's acceptable, even at the same time as you're aware of the damage you're doing to your skin. Also, if it's not inappropriate to say this, the feeling of scratching is sometimes almost orgasmically intense - as is the feeling of super hot water, I've noticed. But I stay away from the hot water because I know it's too drying to the skin. I bet if we could all refrain from scratching, our skin would heal so much faster. The back of my right knee (along with both wrists) is my worst area. I keep tearing it apart over and over, can't help myself.
4. My Symptoms at 6 months (April, 2012):
My back, torso & most of my legs have normal skin now. The back of my knees, arms from elbow down, top of hands, eyes, chin, neck & upper chest are still red, itchy and very sensitive. My temperature and energy levels are now normal. I can exercise and do all activities except sitting still. I can't sit still because I get too itchy. I still dread bedtime, never knowing how my sleep will be. I can usually get about 6 hours if I stay in bed until noon. I usually don't go to bed until about 3 am.
