The Only Way Out Is Through

If you've followed on from my previous blog ('Before The Storm'), I told you I made the decision to stop using topical steroids for my eczema due to them giving me worse rashes, thinning my skin and the fact that they appeared to no longer be working. As it turns out, I had actually developed a strong dependency to them which is known as Topical Steroid Addiction. And with an addiction, eventually comes a withdrawal.

Let me just start by saying this is by far the hardest thing I have physically, mentally and emotionally endured in my life. And I don't say that lightly or to be dramatic! I've had my fair share of health ailments pop up over the years, some that have required surgery, so I've known pain and discomfort before. But nothing could have prepared me for this! I thought I knew what bad skin was like having grown up with eczema, but withdrawing from topical steroids is nothing and let me repeat, NOTHING like eczema! Though I had roughly researched Topical Steroid Withdrawal after learning that I had developed an addiction to them, I never in a million years thought it would be as severe as what other sufferers had experienced. Like somehow I would be invincible because I already care for my body so well. I don't eat gluten, dairy or refined sugars. I don't drink alcohol, coffee or soft drink nor do I smoke or do any recreational drugs. I go to the gym, play sport and meditate (complete angel obviously😉). My usage of the creams was also pretty minimal in comparison to others. So I told myself that it'll just be a bit of bad skin for a little while, shouldn't be too bad. I'll take a few weeks off work, catch up on some TV, Marie Kondo my entire house and go over some of my old study books. HAHAHA oh girl were you dreaming!!!!!! Jokes on you babe, shit got bad reallllll quick.

Before I dive into my withdrawal process, let me give you a little background info on topical steroids. I know it's boring and technical but it's important to learn and understand so that you or anyone you know can make an informed decision before using these potent creams and ointments. It also helps explain why the withdrawal from using them can be so severe. There have sadly been a few deaths as a result of Topical Steroid Withdrawal (TSW for short). I know that sounds heavy, but it's sadly a reality. It is also important to know that not everyone will develop an addiction to topical steroids. Don't quote me on this because I haven't been able to find the supporting document but I once read that roughly only 12-15% of users will develop an addiction. Which doesn't sound like a lot, but considering how many scripts get handed over to treat any minor skin imperfection, I think that percentage is still pretty alarming. Which is why education and awareness is so important. To give you a bit of an idea of how many this addiction affects - in the world wide facebook group there are are over 13,000 members, in the Australian group there are 1000 members and the hashtag #TopicalSteroidWithdrawal has over 30,000 posts on instragram. And that's only the people who have made the discovery of this condition. There would be plenty more out there! But it's not a real condition remember? 😒

So I'm kind of embarrassed to say, but I never really knew what a topical steroid was. Which sounds silly. How could I not know what I was putting on my body for 30 years? But then again, how often do we truly look into anything we are prescribed? We just trust what we are given. I knew the creams had anti-inflammatory properties that could calm the skin, but that was basically all I knew. I was never told by any of my prescribing practitioners any of the following information and unfortunately it wasn't until I started researching more thoroughly a few months into my withdrawal that I truly learnt what they were and the dangers that come with them. Had I known any of the below information I probably wouldn't have done my withdrawal cold turkey. Even though I wasn't consistent with my usage and I had tried to wean myself off several times with no success, I wish I had followed a strict weaning protocol so that it wasn't such a harsh shock to my system.

Before we go any further, it is important to note that I am not a medical professional and my findings and understandings are based on my own research.

Topical steroids can be known as corticosteroids, glucocorticosteroids and cortisone. They act in a complicated way with our endocrine system, immune system and blood vessels in the skin to treat inflammation for a wide range of conditions. They are a synthetic, or man-made, version of hormones normally produced by the adrenal glands (two small glands that sit on top of the kidneys). Steroids mimic natural hormones produced in the body, including glucocorticoids (such as cortisol) and mineralocorticoids (such as aldosterone).  They can vary in structure depending on the type of synthetic hormone incorporated. Topical steroids can reduce inflammation (redness and swelling), suppress the immune system, and narrow the blood vessels in the skin. Their main purpose is to reduce skin inflammation and irritation. (This information has been taken from the ITSAN website which has a very thorough explanation of topical steroids. Click here if you would like to learn more).

Now you will see I highlighted 3 statements in the above paragraph. These are very important and something I wish I had known before using topical steroids for almost 30 years, and then withdrawing from them.

The first point I have highlighted is about topical steroids being a synthetic hormone. I had no idea a topical steroid was a synthetic version of the hormones our adrenal glands produce. What this essentially means is that for the majority of my life my adrenal glands didn't have to worry about producing their own hormones because I had the synthetic version being absorbed into my body. When I took away the topical steroid ointment (aka the synthetic adrenal hormones) my actual adrenals had no idea what they were suppose to be doing. Cue the deer in headlight response!

One thing I wish I did before stopping topical steroids was to have a thorough blood test that checked all adrenal functions and all other levels in my body so that I had an accurate base line to work with and could track what was going on. It was only about 2 months into my withdrawal that I started getting bloods taken to see what was was happening. Prior to that it was a good 6 months since my last bloods were taken so unfortunately I didn't have an accurate starting point to see just exactly what damage was being done. My adrenals weren't doing too badly on paper but symptomatically I was getting hammered (severe insomnia, chills, fatigue and hair loss - let's talk about these later). I have highlighted this adrenal issue because sadly the deaths I spoke about before have been because of this and other infections. The reason withdrawal can be so dangerous is because of the fact that Hypothalamic-Pituitary Adrenal axis suppression is known to occur with the use of all topical steroids. (HPA axis is a term used to represent the interaction between the hypothalamus, pituitary gland and adrenal glands which play an important role in our stress response). Basically the suppression of this means a reduction in the cortisol response which may then cause an impaired stress response and an inadequate defence against infection. Pretty scary stuff!!! Why on earth does this not get told us to when we are prescribed these creams? Makes me furious!

The second point I highlighted was the fact that topical steroids suppress the immune system. Again, I had no idea! Now suppressing your immune system has it's place don't get me wrong. It's an important treatment in many cancer treatments and immune system disorders. Suppressing the immune system simply means it can help control conditions in which your immune system mistakenly attacks its own tissues. But for treating eczema, I'm not so sure! It's like a volcano, ready to erupt at any moment if you stop treatment. Essentially for years I just buried the rashes and to me this is what suppressing the immune system means. As I would rub the creams into my skin, I was just pushing it all back down into my body, hiding it. What suppressing the immune system also meant for me was that for years I almost had a fake shield of armour and being pumped full of anti-inflammatory creams, I had a pretty good shield for infections. Taking that away meant that my shield came crashing down. It was like when the Night King burnt the wall down in Game of Thrones and the white walkers invaded Westeros (if you haven't watched Game of Thrones then you won't understand this reference. Also if you haven't watched Game of Thrones - we can't be friends). Basically, the gremlins soon made their way into my body because my immune system no longer had protection and I was like a new born baby trying to establish a new immune system. Cue more deer in headlights and infections yay!

The last point I have highlighted is the narrowing of blood vessels. When you apply topical steroids your blood vessels constrict, making your skin appear less inflamed and red. When you stop using them your blood vessels dilate, which makes your skin red. Topical Steroid Withdrawal also has another name which is Red Skin Syndrome and this understanding of what they are doing to your blood vessels explains the severe redness that can occur when they are no longer used. If you can remember from my last blog where I mentioned how I was continually going from good to bad to good when I would stop and start the creams, this is why.

Now let's talk about my usage and potency of my creams. Having such a severe reaction you must think I over used the creams and slathered myself in them. Well I didn't. I would use them when needed, as prescribed. Sometimes this saw me using them once a day, sometimes twice a day when it was bad. But most of the time it was not an every day usage. Some weeks I wouldn't even use them. My typical places where I applied them were patches behind my knees, calves, wrists or forearms. I would use a 15g tube and that would last me roughly 8 weeks. Sometimes I was prescribed a 50g tube, but I found that if I had the larger size I would use more so in recent years I tried to use the smaller tube.

In my childhood and teens I wasn't using a very strong cortisone, but I would be prescribed increased strengths from time to time. When I saw the Dermatologist 10 years ago, unbeknownst to me, he had prescribed me the second most potent topical steroid on the market. And this is the one that I truly believe led me to where I am now. It was called Diprosone ointment (FYI ointments are more potent then creams). There are 7 classes of topical steroids, ranging from 1 - 7 with 1 being the most potent. Class 7 is mild and you can buy over the counter at the chemist. Are you ready for the next punch line? Diprosone ointment is 600 times more potent than any over the counter cortisones. Gulp!!! My poor skin. No wonder it was like a magic potion. One dob of it and my whole body would be good. Seriously, when I was experimenting coming off steroids and I would break out everywhere in rashes, all I had to do was put a small amount on one area of my body and the rest of my body would calm down, literally over night. This also explains why I thought my usage was good.

One of the biggest questions I find myself asking since going through all of this, is - Did I ever truly have eczema? Honest answer - as a child, I believe so. As a teen and adult, I'm not so sure. I actually think for years and years I have just been rebounding from steroids thinking I just had eczema. Only time will tell I guess, once the withdrawal is fully over and I can see where my skin is at. Rough research has said healing from steroids takes about one month for every year of usage. So technically I have 30 months and its only been 14. But everyone is different and unique and some have recovered in a matter of months and some years. Some have flawless skin afterwards, some have their original childhood eczema. Unfortunately, only time will tell.

One of the most asked questions I get during all of this, is if I'm angry at my Doctors or parents? Here's my answer. I actually have a huge amount of respect and appreciation for Doctors. The system is overloaded and they only get 10 minutes with patients so I can understand the ease of sending people on their way with a script. They also only know what they've been taught. And they are still taught to this day that steroids are the first line of defence for skin conditions. I've had some real shitty Doctors over the years. I once had a Dr prescribe me 7 repeats of my creams so that I wouldn't have to go back every 2 months! Umm hello, remember how I said in my last post that steroids are only suppose to be used in the short term. Safe to say she isn't my Dr anymore! But like any profession, there will be good ones and bad ones, so try find the good ones that resonate with you. My only issue with Doctors blindly prescribing, lies within their duty of care. Perhaps more time is needed in medical schools to thoroughly look in to what is being handed out like candy. In the Preventable Documentary that shows an in depth look into steroid withdrawal, one Dr who lectures says he tells his medical students to first use topical steroids on their own skin before prescribing and then they would think twice before prescribing it. He explains in his experiment how after using the creams for a short period of time, the integrity of his skin suffered quite significantly. Can we clone this guy please and send him to every medical school?!

Now am I angry at my parents? Nope. Not one part of me holds any resentment towards them over this. They only followed doctors advice, which of course we all do. They also led me down the path of natural health and for that I am thankful. I actually take full responsbility for my steroid usage and now for my withdrawal. I was an adult when I was prescribed the stronger steroids and it was my decision to keep using them over the years as was it my decision to stop using them. So there's no victim mentality here! I guess in a way I have to thank the steroids, they got me through so much of my life. Sports, school, social events and even my own wedding. They worked until they didn't anymore. Maybe the addiction damage was already done as a child and teen but that's no ones fault other than the pharmaceutical companies who make them. That's who I'm angry with. They know steroid addiction is a real thing. But as long as there's money to be made and people are vulnerable they will keep pumping these creams out!

The other big question I get - Why would you put yourself through this? I'm sure some of you are thinking this while you've been reading. I even had members of my own family question if Topical Steroid Withdrawal is even a real thing. Can't you just keep using the creams? Surely the few symptoms of using it is better than what you're experiencing now?!

This condition might not be widely accepted in the medical world or well known. But it's real and thousands of people can testify to this. Yes it's a living hell (there's no other way to describe it) but I wasn't really left with much of a choice. My skin was rapidly deteriorating using them. I was already using the second most potent one available so the next step was to go to the strongest one and then what? Go through all of this 10 years further down the track when I have kids and a family to look after, no thanks. My body has been through such a massive detox coming off the steroids and it's working so hard to eliminate them, I can only imagine the further damage they would be doing if I had stayed on them.

Just before I started my withdrawal, I actually felt so toxic inside my body and I was lethargic and had brain fog. Thinking back, I think that was my body giving me my last clue that these steroids were doing more harm than good. One amazing symptom that happened during my withdrawal was an intense metallic smell coming from my body. When I would scratch, the ooze smelt really metallic. And this blows my mind - but for a few weeks I couldn't realise where I knew that smell from. It smelt so familiar. And as it turns out, while I was throwing my steroid ointment in the bin and saying my final goodbyes (singing James Blunt - gooooodbyeeee my lover), I could smell that metallic smell. So I opened the lid to smell it and what do you know, it was the exact same smell purging from my body. Crazy huh?!

So as it turns out I really love to write and express. This blog turned out to be longer than I thought and I haven't gone through my actual withdrawal process yet. Let's save that for the next one!

Courtney xo