Women's Health Stories

After having eczema as an infant, it had disappeared for many years until a short cold virus during my second year of university seemed to spring it back into life. It started with a few patches of discoid eczema on my arms, which was treated with mid potency steroid creams. The eczema started to spread quite rapidly, and I suffered from worsening eczema, infections,  several bouts of scalded skin syndrome and one week in hospital suffering from a sever e skin reaction and organ failure that the doctors were unable to diagnose the cause of.

My skin would go through periods of good and bad, and was monitored by my GP’s, who would keep me supplied with the suitable steroid creams and moisturisers on repeat prescription. This continued for many years. Slowly the eczema worsened -it spread to my neck and face, I could not go more than a couple of days without needing to apply more steroid cream. I had to have emollient baths every night, and slather myself in emollient creams twice a day at least. Eventually, the emollient stopped working, and I had to swap to something oilier. The steroid creams became useless, and I changed to a high potency ointment. Still the eczema got worse. Now it burned – especially on my face – to the point where I could not stand any heating near me, and centrally heated rooms, cars and shops were unbearable.

Throughout this time, I tried everything to help ease my symptoms. Like many people, I assumed the eczema was triggered by certain foods, pollen, dustmites, humidity, stress, exercise. I kept diaries, and questioned everything I did. Social events got cancelled, friends were avoided, boyfriend was often kept at arms length as his skin and stubble was too painful to touch. Life was getting difficult, and the only thing that helped was the steroid ointment. I had to have it with me at all times, and dreaded ever running out or being without it for some reason.

I also started noticing other health issues. I was constantly tired – by the end of work all I could do was slump on the sofa. I could not understand how friends had the energy to go out, have children and lead such active lives. I suffered from crippling blepharitis and sinusitis. By bedtime, I was unable to keep my eyes open as they were so swollen and itchy – this was diagnosed as hayfever, although it was occurring throughout the year. I had to have at least two days off a month with debilitating sinusitis. I was referred to ENT specialists, who treated me with nasal steroids, and even operated on my head to widen the sinuses. I developed what we thought was regular ear infections (at least once a month) and I had continuous tinnitus. My skin became dry and thin, even in areas where I did not have eczema, and sagged off my body like a 90 year olds. My hands and feet regularly became very swollen for no apparent reason.  I basically felt generally ill, and constantly asked doctors for tests to check we were not missing something serious. All the tests always came back fine. It was very frustrating.

Finally, back in January 2011, I stopped and seriously thought about how much steroid cream I was using. I wondered if I was unknowingly absorbing the steroids into my system. I’d previously seen talk of Cushings syndrome on the internet, and thought a lot of my symptoms were strikingly similar. The label on the ointments box had warned not to use on the face due to possible skin thinning, but I thought I would cross that bridge if it happened (As it was, the skin on my entire body – especially my eyelids – was extremely thin without me realising -  I thought it was just how my skin was)

I decided to try a brief steroid detox. I’d done something similar 5 years previously when I was suffering from terrible acne, which I believed to be caused by overuse of the creams. I’d suffered extremely sore, itchy arms for a couple of weeks, but then things seemed to start improving slightly, so I thought the apparent rebound was over, and started using the creams again.

But this time was much different. Exactly two days after stopping the topical steroids, my face ballooned up and become extremely hot and itchy. I thought I was having an allergic reaction to the antibiotics that I had once again been prescribed for an ear infection. Stopping the antibiotics, however, did not help, and I quickly realised that it was rebound from the steroid ointments. I decided to stick it out and wait for my skin to settle down again. I spent two weeks with a beetroot red face and neck. The burning was unbelievable. I had -40°C icepacks on my face and neck constantly from the freezer at work, and had to take continuous ibuprofen for the pain. I could not sleep from the discomfort.

After two weeks, I relented, and used a small amount of steroid on my arm crooks and neck.  I was determined never to use them again on my face. Overnight, my skin settled down again completely. I was comfortable again. Once I was ready, I decided to try and stop the steroids again. Again, two days after stopping the creams  - that had been applied to my arms and neck! – my face exploded with burning pain and itch. A few more times I tried this. I would apply the creams to my arms, but on stopping, two days later my face would become unbearable, swollen beyond recognition, burning red and itchy. The rash was also starting to spread. It now affected my neck, arm crooks and armpits. Every flare would cover a little bit more of my body.

By April, I had stopped using the steroid ointments completely for 6 weeks. The burning, red rash had spread across the entire top half of my body, and was starting to spread down my legs. I’d been referred to dermatology, and had explained to them that I believed I was suffering from steroid rebound and could they help. They informed me that steroids were perfectly safe to use, and that what I was suffering was untreated, severe eczema. They refused to offer any support other than supplying me with steroids to reduce the symptoms. They prescribed the most potent steroid ointment available (Dermovate) and a course of prednisolone. Frustrated, I went home without filling the script.

This continued for several months. I was completely debilitated. Work was very very difficult, and I had to take many days off because of the pain. I had several trips to accident and emergency when I seemed to suffer from some sort of severe allergic reaction which resulted in my body oozing fluids at an alarming rate , and my face and mouth swelling up even more than usual. I lived in the bath, which was the only place I was comfortable, and started getting very depressed.

By this time, I had come across Kelly Palace’s website, in which she described very similar symptoms to myself. Despite my reservations about contacting a random stranger on the internet, I emailed her, hoping to hear that she had continued her withdrawal, and was recovered. She very quickly replied, informing me that she was still going through withdrawal, but reassured me that she was getting better. She explained that she had set up an email group of other people going through the same thing, and I was welcome to join if I liked. This was the very start of ITSAN – before it even had a name!

By the end of May 2011, I was bedbound, and unable to leave the house. I would not come downstairs, I could not prepare meals or do housework. Tired and desperate, I paid another visit to dermatology, who convinced me that enough was enough, and my only option was steroids. I relented, and started a six week course of prednisone. I was still convinced that steroids were the problem. Despite the agony, there were a lot of things about my body that were starting to improve. Where there were clear patches, my skin seemed ‘thicker’ – less blue and veiny. My boyfriend commented that it did not look like my skin anymore. My blepharitis had completely cleared up (although now I was suffering from other problems, especially eyelid edema) as had my sinusitis. Stomach issues were better and my peroids were becoming regular after many years of problems. I paid to visit a consultant dermatologist privately, and, although he did not believe in steroid addiction, was content to move me to his NHS clinic and start me on cyclosporine.

I transferred from the prednisolone directly to cyclosporine, and remained on that for 18 months. My skin was by no means clear in that time, but it was much much better, and I was able to start doing things again. There were several up and down in that time, including a very rough patch from Nov 2012 – March 2013. My skin again became unbearable, and I had to take 6 months leave from work. I suffered terrible anxiety, panic attacks and depression.

In March 2013, I decided to stop the cyclosporine.  Remarkably, my skin actually improved slightly, and has continued to get better since. Now, most of my skin is better than I can ever remember it as an adult! I only need to moisturise sore areas, which are face, neck, arms and hands. The rest of me is silky smooth and needs no moisturising at all. The skin in the sore areas can still be very uncomfortable, and can flare up badly some days. But it is nothing compared to how it was two years ago – or indeed, pre withdrawal. Most importantly, I can see it is progressing. Every week I see improvement, and more and more areas of skin are happy and healthy. My health in general is also much better. I have a lot more energy most days (although I still suffer from extreme tiredness on days when my skin is flaring) I no longer have any other health problems AT ALL. I am a fully functioning, normal 36 year old. It’s great! My face, although sometimes sore, so longer burns like it used to. I can go to the cinema without worrying that the air conditioning will be too drying for my skin. I can travel without panicking about how to get all my massive tubes of moisturiser through security, and how to manage on a long flight.

The length of time it takes to recover from steroid addiction makes it very difficult to believe in. How can anything take so long?! But I have been in contact with other people suffering like me, and have seen many many friends get better. Completely. So many members of ITSAN are now leading completely different lives, free from something they, their family, and doctors, believed was for life.  Everyone who has stuck with the withdrawal has improved. Some faster than others, but everyone gets there eventually. These days, thanks to Kelly Palace, Dr Rap and the ITSAN forums, the help and information for new sufferers is much more thorough, and people have somewhere to come for advice and support that their doctors refuse to give them.