As part of a tradition of setting myself a challenge every year (on the 2nd anniversary of giving up smoking), on the 28th of November 2018, I set myself the challenge of stopping using steroid creams to treat my topical eczema. Initially that might not sound like much of a muchness, especially if you don’t have any experience of the condition.
I’d been using creams prescribed by doctors on a regular basis for around 14 years, or something close to that. I don’t remember the first time but without fail tubes of hydrocortisone, or ever increasing strengths of steroid cream have persistently littered bedrooms throughout my time at school and university. I’d tried supplementing my cream regime with many moisturizing creams with little success.
I’ll describe the condition for those that have not experienced it before. If my skin were to go without any steroid cream for a prolonged period of time (maybe 3-4 days), small red spots would begin to form. Putting on some steroids would make the spots recede. But if left unchecked, the spots grow into larger scales, or spread over the surrounding skin, producing more itchy red dots. I only realized how bad things could get when I ran out of the stuff while on holiday. I’d always been quick to grab the cream whenever the spots showed up, it was a nightmarish revelation to find out what comes after the initial stages of inflammation. I’d ended up with about thirteen 50 pence piece size weeping sores.
It was at this point I wanted to look for a way out, but I didn’t know how. November 2017, I went to see a doctor and got a bumper supply of strong steroid creams that lasted me until November 2018 the next year. I was using it as sparingly as possible, and I was lucky in some respects that the cream was still keeping the spots at bay.
I went to see a GP about the problem, and was told that if I was using the cream sparingly and it was working as usual, there wasn’t anything else they could recommend. It was at this point I turned to the internet for solutions. Joining closed facebook groups filled with other suffering from the condition truly opened my eyes to the world of people going through TSW (Topical Steroid Withdrawal), or something similar.
The first thing to notice was that my case was really rather mild. Maybe not to someone who’s used to having completely clear skin, but the pictures people were posting to these groups verged on being graphic. Whole arms and legs completely covered in the scaly skin I had at my worst experienced only 50 pence piece sizes. I really feel for the pain people suffering with this are going through, and I can hardly imagine how horrible it must be to have such severe cases.
The good news was that there was a cure. Or at least something other than more steroid cream. The cure is topical steroid withdrawal (TSW), not using any steroid creams, or for those feeling adventurous, moisture withdrawal (MW), not using any moisturisers and reducing the number of showers and baths taken. These two remedies are the mainstays of the TSW facebook groups. With so many people promoting the same method for recovery, I thought I’d give it a go. I went for the most extreme method of combing both TSW and MW. After a month, my skin was in the worst condition it had ever been in. I wish I could say that I stuck it out and eventually my skin cleared itself up, but that wasn’t the case. I saw no improvements in my own condition, and after spending more time in the groups, I began to notice posts of people who had been trying the same remedies I was on, posting that they weren’t having any improvements either. Some would be after 2 months, or 3 months in, but I really started to lose confidence in the process when I noticed people saying they were 3 or 4 years in, without seeing any improvements! It was at this point that I bailed and went back to using creams to treat my skin.
I sometimes wonder if people are being misled by these groups in a big way, I felt like I certainly was. Although I don’t want to write off the groups completely. Behind their main ideologies, further down the discussions and deep in the comments there were some hidden gems that have really helped fight off the psoriasis. There were some people talking about diet, and how this can have a huge impact on autoimmune conditions like psoriasis. After quitting eating all gluten and dairy for a month, I saw huge improvements. To the point where I wouldn’t have to use any steroid cream, and the red spots wouldn’t show their face. I occasionally forget and eat some bread, or just pig out on some cake, and like clockwork the red spots come back.
I think the insularity of facebook groups can be helpful for support, but they could do with more balanced perspectives about how to solve these autoimmune conditions. I feel like some people might be suffering unnecessarily. I keep posting about diet to try and spread the word about gluten and dairy. If you suffer from similar problems, please give it a try, and let me know the results.