Wednesday, 24 December 2014

One Week off Topical Steroids


It has been one whole week since I stopped using topical steroids. And what a week it has been.

On my first day, the symptoms were mild and localised to my face. Since then, the symptoms have gotten worse with each passing day and have spread down my neck and onto my chest, shoulders and upper back.

Me on day 1 vs day 7.
I have experienced a number of unpleasant symptoms so far.

Firstly, red, hot and swollen skin that burns. It feels similar to really bad sunburn. The only relief from this comes from ice packs, ice packs, and more ice packs. Seriously. I need to have ice packs on my face all day long. For me this is probably the most debilitating symptom so far because it is so painful and also I can't really do anything when I constantly have to hold an ice pack against my face.

I love my ice packs.


Secondly, my skin has had moments of being crazy itchy. Many people call this a 'bone-deep' itch due to the feeling that it originates deep beneath the skin, and it is nearly impossible to alleviate, especially without causing a lot of damage to the skin. It is nearly impossible to describe the intensity of this itch. I had these itch-attacks for a few hours a day for the first few days of my withdrawal. Since then it has been more of a less-intense but constant itch.

I have also been enduring skin that is so tight that I can't always move my face or turn my head, and that is constantly flaking and shedding.

One of the most nauseating symptoms I have been dealing with is (for lack of a better word) crusting and swollen eyes and ears, and a scaly and flaking scalp. In the mornings I wake up and find my eyelids more or less 'glued' together which is truly heinous and I have to prise them apart before I can open my eyes. Also my ears are constantly cracked, crusty and weeping no matter what I do. My ears and scalp gross me out so much that I've taken to covering them up with a headscarf, trying not to think about them too much and praying that these symptoms won't last too long.

Another big problem for me is sleep. I tend to get an hour or so at a time throughout the night, and a few consecutive hours spent sleeping of a morning, while spending most of the night in a half-asleep state. This is especially bad mostly because this zombie version of myself isn't able to stop herself from scratching so I can do quite a bit of damage to my skin by scratching at night.

So what have I been doing to cope?

Mostly I've just been trying to keep busy, I've been making Christmas presents and just trying to be as active around the house as possible, even if it's only by wandering back and forth around the house. I try to move around a bit as I'm convinced that this helps my facial swelling go down.

I've also been keeping my diet as healthy as possible, taking supplements of cod liver oil, evening primrose oil, vitamin D, and probiotics.

I have also been taking bentonite clay internally. Bentonite clay is a swelling clay that is supposed to be great for detoxifying and healing and I plan to take bentonite clay baths also.

I'm being looked after very well by my boyfriend and family. Spending the day around people also tends to distract me from the pain and make the day go by faster.

So far the worst part of this experience is waking up of a morning, face swollen and sore like I've been punched in the face, not being able to open my eyes and surrounded by dead skin.  

However a positive about this week is that I have found a doctor who knows about topical steroid withdrawal and is going to monitor me while I go through the withdrawal process. This is amazing as it is hard to get support from a lot of doctors as most don't even believe red skin syndrome is a real condition. 


Anyway, it's Christmas Day tomorrow, here's hoping I'll be able to enjoy it.

Merry Christmas everybody!

Thursday, 18 December 2014

Day One off Topical Steroids

This is the first day of my withdrawal from topical steroids and I thought I'd share what the last few months have been like for me as well as my thoughts on my first day.

Since I found the ITSAN website a few months ago and learned about topical steroid addiction, I have been obsessively following blogs that document people's personal experiences with this condition.

I had to start mentally preparing for what the withdrawal process would do to me and reading these blogs allowed me to do this. I also had to start planning things around the possibility that I may not be able to leave the house or work for quite a few months once I started the withdrawal process.

With this in mind, my boyfriend and I pushed back our plans to go travelling around Europe this year and after I completed my university exams we moved in with his family so that we could both have adequate support while I go through withdrawal.

Over the last few weeks/months I have also made two big lifestyle changes.

The first major change I have made was to my diet, which, thanks to four stressful years at University, was not great, and full of foods that I'm sure now were definitely contributing to the severity of my (steroid induced) eczema.

Many people have made connections between their eczema and certain food groups. Gluten and dairy are the main ones for many people and were a big part of my diet so these were the first things I phased out (although I haven't been able to completely cut out chocolate ). I have also cut out alcohol (which I have found tends to make my face red and inflamed almost instantly), nightshade vegetables (tomatoes, potatoes, eggplant, etc...), corn and citrus fruits (as these are also thought to contribute to inflammation in the body).

I feel like one day I will be able to reintroduce some of these foods back into my diet, but for the moment this diet has led to a notable decrease in my general levels of itchiness and also in the number of crazy itch-attacks I experience. This leads me to believe that the source of my original eczema was (at least partially) due to food sensitivities and altering my diet was a good decision.

The second major change I have made in the last few weeks is complete withdrawal from moisturisers.

Most people who have eczema are told by our doctors that the treatment involves constant moisturising of the skin to ease the itch as well as using topical steroids. Because of this I have been moisturising daily for years. I always, ALWAYS moisturise after showers and have been applying some form of moisturising lip balm several times a day for as long as I can remember. A few weeks ago I could not fathom even a day without moisturisers. The thing is about constantly moisturising the skin is that it is possible for the body to become dependent on them. The body 'thinks' that the skin has all the moisture it needs and stops producing it's own, making it even dryer and leading to even more usage of moisturisers.

So the idea behind moisturiser withdrawal is that by stopping the use of moisturisers, the body should start producing moisture for the skin again, and the need for moisturisers will be reduced or eliminated.

During topical steroid withdrawal, some people swear by using moisturisers to stay comfortable, even if it means moisturising several times a day. However it has also been suggested that constantly moisturising the skin during withdrawal can make it even more hot and itchy, as well as making it more susceptible to damage while scratching, and increasing the amount of time it takes to heal.

Dan's blog here was the one that convinced me that withdrawing from moisturisers was an essential step for me to take going into topical steroid withdrawal.

I have spent the last three weeks without using any moisturisers while my skin was still manageable, as I knew doing it at the same time as topical steroid withdrawal would be much more difficult and painful.

Initially it was very uncomfortable. The first day my face was so tight and painful that I spent most of the day with an icepack on it. I ended up caving in to the pain and used pawpaw ointment on my eyes and lips twice throughout the day to ease some of the discomfort. However, my face was the most uncomfortable area of my body and the rest of me was fine, just localised dryness on the patches of eczema I had on my body. The next few days were also pretty uncomfortable but I managed to get through them without putting any products on my body including my face. Since then my skin has felt pretty normal through the moisturiser withdrawal process with the exception of after bathing. I have been taking Dead Sea Salt baths as this is also something that helps a lot of people, especially those going through moisturiser withdrawal. After I have a bath my face gets flaky and uncomfortable, but I can usually tough it out for the day and when I wake up the next day my face feels normal again. I also noticed that the patches of (steroid induced) eczema on my body dried out and healed faster than it ever did while I was using moisturisers. Thus I feel it's safe to say that moisturiser withdrawal pre-withdrawal from steroids was a good call.

So today is day one of my withdrawal from topical steroids.

My pre-withdrawal symptoms include uncontrollable eczema rashes all over my body, an insanely dry, flaking scalp and the unfortunate mild hair loss around my hairline.

I was prepared for a full-body flare straight away as I know many other people have experienced. However, to my surprise I woke up feeling for the most part pretty normal.

I did experience some mild symptoms throughout the day. The rashes I had on my body prior to today became more red and pronounced than they were previously even without me scratching them, and my general itch levels were much higher than I would normally experience. The state of my face was a little worse than the rest of my body, being a little red and swollen and I did experience a deep, crazy itchiness around my jawline for a few hours this afternoon which was very difficult to control.

On the positive side, yesterday was the first day in several years where I did not worry about applying any products to my skin which was a huge relief, I did not step on any of those stupid lids to the steroid ointment tubes, and I got the best nights sleep I've had in months.

So overall, not a particularly bad day. My skin was not uncomfortable enough to stop me from doing anything I wanted so I try to enjoy it while being prepared for it to take a turn for the worse.

Monday, 1 December 2014

The First One

Hello and welcome!

This is my first post documenting my withdrawal from topical steroids, and I'll just make this an introductory one.

A little bit about me:

My name is Hayley and I'm from beautiful Tasmania in Australia. I love animals, Chinese food, knitting, reading, playing PlayStation and watching TV (my favourite show is Friends). I have just graduated from University and am now living with my wonderful boyfriend Tomas and his family.

My eczema story:

I have had eczema since I was a baby, with it being localised for the most part to the backs of my knees and the creases in my arms, with my Mum occasionally using hydrocortisone on it. In my mid-teens my doctor prescribed a medium potency topical steroid which cleared these patches of eczema. During these years I would get months of completely clear skin with occasional mild flares, and I would again use topical steroids and these would clear up pretty quickly.

In the years when I was 16 and 17, the times where my skin was completely clear were becoming less and less and my patches of eczema covered a more of my body, including my face, all the while I was still using topical steroids to clear theses areas up. At this time my eczema was still manageable.

Then began my first year of University four years ago now. My entire body broke out in debilitating eczema. I could barely attend classes and I was at the doctors very frequently. I developed severe insomnia, intense and continuous itchy skin, raw and flaky skin from head to toe. I hated to shower because the rawness of my skin caused severe pain. I hated leaving my room or seeing anybody because of how awful I looked, but I managed to go to work most of the time (I don't even know how I did that). I can't remember exactly what I was using on my skin at the time, I'm pretty sure I was using some form of topical steroid but even though I was using it as my doctor prescribed (twice a day), it helped only a small amount and it wasn't until the end of the year that my skin mostly cleared up. I have tried over the last few weeks to remember more about that year of horrible eczema but I honestly can't, I guess the pain of it has been blocked out of my mind, which is probably for the best.

Since that year, my eczema has been full body, without ever having periods of completely clear skin. It goes between times of being manageable and times of it being so horrible that I just have to shut myself away and hibernate until it's not so bad again. I have continued to use my steroid ointments daily at my doctor's advice. Over these last three years I have, on occasion, tried not using my topical steroids for a day or two at a time, resulting in a pretty much instantaneous flare, with extremely painful red skin and facial swelling, where I would give up and used my topical steroids again, thinking it was just my eczema getting worse.

What I didn't realise at the time that this was one of the most obvious symptoms of topical steroid addiction, as was the spreading of my eczema and my growing dependency on my steroid ointments. For some reason I never made a connection between my symptoms and the medication I thought was helping me, I had resigned myself to believing that I would have severe eczema for the rest of my life.

A few months ago I was in the middle of a pretty massive flare that I believe was caused by the stress of exams and I was googling something to do with incurable eczema (as many of us tend to do I imagine) and I came across the ITSAN website (http://www.itsan.org/) and found out about a condition called red skin syndrome (or topical steroid addiction) and everything fell into place. Essentially, prolonged use of topical steroids can cause skin dependency and worsening eczema. To get better from this condition is simple, you just stop using topical steroids. However, the difficult part of this is that stopping causes a nasty 'rebound', where your body essentially goes into withdrawal, with debilitating symptoms that can last between 1-3 years from what I can gather.

The reason why many people are doing this even though we know it will be awful is that by the end of this horrible process, we hope we will find that we have grown out of our original eczema (not the steroid induced eczema), or that if we still get eczema, we will be able to manage it by isolating allergens our skin is sensitive to, and finally live a normal life where we are not dependant on a medication that is much more dangerous than we were ever led to believe by our doctors.

So that is what I will be doing while documenting my progress on this blog. Currently I am still on my topical steroids with plans to go off them in the next few weeks. I am trying something called moisturiser withdrawal before I do this, more on that next time.

Wish me luck!