I haven’t done an eczema update in quite a while, mostly because not a lot had been happening, well until this week anyway! I’ll start giving a short history of my journey so far, in case you haven’t been here before.
The Worst Flare
I’ve had eczema all my life, and other than when I was a kid it was fairly under control. In 2017 something changed and I began experiencing the worst flare ups I had ever had. I was constantly stuck in a cycle of flaring, barely going a few days without some part of my body being swollen, itchy and weeping. I tried every moisturiser under the sun, stronger and stronger steroid creams and even a course of oral steroids in a bid to regain some sort of control. By the end of that year I’d finally managed to convince my GP to refer me to the dermatologist. After multiple tests and appointments I was finally prescribed a course of Methotrexate.
My Methotrexate Journey
I started off on just 5mg a week of methotrexate, and after about three months I started seeing the positive results from it. Each time I saw my dermatologist he would up the dosage slightly just to keep on top of it and to try and prevent any further flares. I suffered from fairly mild side effects and only occasionally would I get mouth ulcers, although I did notice my hair became much weaker and would fall out. Towards the end of my methotrexate treatment I was on 12.5mg a week, and something just switched. I was exhausted all the time, and just generally felt rubbish, especially the day after I had taken my dose. I also noticed that my skin gradually started getting worse, flare ups became more regular and they wouldn’t subside either. I have barely used steroid creams since autumn last year, but have completely stopped since early February. And as much as people try and convince me I have TSW, I’m fairly certain I haven’t, it’s only been since my dose of methotrexate has been upped that my skin has been getting worse….sorry just had to get that statement in there before I received the usual onslaught of people telling me I’m an idiot and it’s ‘100% TSW’. Don’t get me wrong it has crossed my mind a few times, but my symptoms just don’t match up and I’m (thankfully) not going through the sort of flares I have seen other people going through… you guys are stronger than you realise!
Where I am now
After a lengthy talk with my dermatologist at my last appointment a week ago he decided it was time to come off methotrexate as it clearly isn’t doing anything for me anymore. He said we’d try a course of Ciclosporin, also an immuno-suppressant. But rather than just taking it once a week like Methotrexate I take Ciclosporin every day. First impressions…the tablets smell like cannabis, which is bizarre enough! But after a week of taking them I can already see my skin calming and becoming less angry! Like Methotrexate this isn’t a lifetime solution, and i’m in the very early stages of the treatment. But I’m feeling much more positive that I’m doing something proactive about my skin, and that I can hopefully look forward to all the trips and weddings i’m going to throughout this year!
I’m going to try and do regular updates on how I’m doing with Ciclosporin, especially in the earlier stages. One last thing, I know a lot of people are against Topical Steroids, and medications like immuno-suppressants. But this is how I’m doing my journey, and I’m fed up of people telling me I’m wrong for doing it, especially in the aftermath of me doing an article that ended up in The Sun. The amount of hate and negativity I got really made me struggle, and I had come such a long way with my mental health that it really set me back. I appreciate everyone has their opinions, and their own journeys, but maybe keep them to yourselves before you make someone else feel guilty about the way they’re treating their own body. Sorry for the rant, I just needed to get that out there!
Lots of love to my fellow itchy buddies!