4 Years of Misery…

I was first diagnosed with eczema in 2004 at the age of 13. At that time, it was only on my hands, arms, back of my legs and my face (mostly around my mouth and my eyes). I managed it for years using basic topical creams.

Trying everything under the sun

That was until, October 2014 – I had not experienced such horrible discomfort and seen my eczema flare up so bad. I actually had to leave work because it was so bad and I went straight to the walk in clinic. It was the first time I had experienced anything like that, and I was honestly scared. I was put on antibiotics because my skin was so bad. Ever since then, my eczema has been out of control. For the last four years, I have tried every cream, moisturizer, steroid cream under the sun. Some things would work for a few days or not at all. I don’t even want to know the amount of money that was wasted on everything I tried. I’ve also done light therapy two separate times, once in 2014 and again in 2016. Each round was treatment three days a week.

At my very worst

2016/2017 was when my eczema was at it’s very worst. I was in constant physical and mental pain. My eczema was also everywhere – there wasn’t one piece of my skin that wasn’t either red, cracked or dry. I was miserable. I was seeing two different dermatologists at this point, one at my light therapy treatment and my regular dermatologist. In addition to the light therapy, I was also on prednisone and methotrexate. The only saving grace I had, and any sort of relief I experienced was when I was on a very high (and not safe) amount of prednisone. For almost a year my dermatologist kept increasing and decreasing my dosage. It was frustrating because of the side effects I experience while on the drug. I gained 60lbs in a blink of an eye (mostly water weight but to a young woman, it hit me hard). I also was not sleeping at all – I was either too itchy or in pain and I got very depressed. I isolated myself from the world, I avoided family events, hanging with friends, basically going out in public. I was even working at home at this point. This was the darkest point in my life and I remember feeling so alone.

Reaching my breaking point

January 2018 was my breaking point. I had been suffering for years at this point and I honestly couldn’t take it anymore, the constant pain, the medication. I went to my dermatologist and told him I didn’t want to take the medication any more because I didn’t like how it made me feel, and I couldn’t take doing light therapy because it wasn’t working. I was to the point where I was going to seek a second opinion from a dermatologist in a bigger city like Toronto (Canada). He agreed with me that was we were doing wasn’t working and he referred me to another dermatologist in the city he used to have a practice with how now works in research and his office was doing a drug trial for a new eczema drug. I jumped at the opportunity because, it was literally my last option.

Starting a trial

I started a clinical trial February 16, 2018. Every two weeks I go and get the drug injected. It’s definitely helped improve my eczema, but I still deal with painful flares just as much as before. It is nice to have more good days than bad. This trial is 72 weeks – so I’m anxious to see what it’s like once it’s finished.

I rambled on far longer than I wanted to, and if you wish to hear more or have any questions, please reach out.

Nicole xo

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