Over the past few months I’ve gotten a few messages from people who stumbled across my blog and were curious about what happened to me after my 15 month mark of TSW. So after two years of radio silence, I’ve decided to post an update on how my skin is these days.
The reason I stopped posting on My Poisoned Skin was for the most part due to lack of time. At the time I started my blog, my skin was so bad that I was pretty much homebound. Writing about what I experienced and sharing it with the world was a way to cope with the mental and physical struggle I was going through. When I started my treatment with Ciclosporin, things got better, so I didn’t have to put my life on hold anymore. I was also pretty stable when on Ciclosporin, so the monthly progress posts became a bit less relevant. Then in 2017-2018, I was in my last year of my master programme in clinical psychology, that consisted of a year-long internship, my master thesis and a horrible statistics course that I was still dragging along. After I graduated, I got a job pretty quickly. And boy, it was a hectic one! So these past few years have been quite busy, which didn’t leave much time or energy to write. Now I’m on the lookout for a new job, so time to pick up the virtual pen once again!
So, how about my skin? After my last post, I kept taking Ciclosporin until july 2018. My dermatologist told me that a new long-term treatment for moderate to severe eczema, named Dupixent/Dupilumab, was finally available. And I was one of the lucky patients who could be treated with it (one of the only upsides of being a “severe case of atopic dermatitis”) in the context of research. I couldn’t just quit the Ciclosporin and get on Dupixent right away though. Before my initial loading dose, I had to run a few tests, so I had to go off Ciclosporin completely for a little while. I was really scared to go back to no treatment, because I feared that my skin would hit rock bottom again. My eczema gradually became worse, but nowhere near as bad as I feared.
Now I’m on Dupixent for about a year and I have to inject myself every two weeks with the drug. It’s quite scary to inject yourself, but now I’ve gotten used to it. It’s also not that hard, since you have to inject in fatty tissue, like your stomach or thighs, and not in a vein or anything. I must admit that Dupixent isn’t the miracle drug I was hoping for though (I did have really high expectations). It works ok for me, but I still get flares occasionally. It’s a bit on and off: some days my skin looks good or even great, and some days I get (random) flare-ups. Apparently, you can generally expect up to 80% of improvement with Dupixent, and I seem to be one of the people who are doing quite well with the medication but don’t clear up completely. To get completely rid of the eczema, most people need topical steroids or topical immunosuppressants (like Protopic) in addition to Dupixent. So yeah, even though I’m doing fine skin-wise, the quest for a “cure” or an even more effective treatment goes on!
My Poisoned Skin 