DRESS (Drug Reaction with Eosinophilia and Systemic Symptoms)
Sigh.
How could I have known I was a part of the 0.1% whom is affected?
I'm lucky I listened to my gut. Even more lucky that I work as a pharmacy tech, which gives me a small amount of knowledge... I started my next titration pack of xcopri yesterday, 50mg-100mg. I'm drug resistant. The cocktail is tough already, as you guys already know how tough it can be. Lacosamide, lamotrigine, ethosuximide, then the xcopri 5 weeks ago. I was excited to see if this was the fix. I ended up throwing up the 50mg about 30-40 minutes after taking it. I thought nothing of it because it's already been a tough titration. DO NOT DOUBLE DOSE. Then I looked at my face in the mirror about 2 hours later.
Never have I EVER seen so many small flat splotches on my face, then this morning I woke up worse. My face red with more colorful small dots, almost as if I had broken capillaries. I was hoping it was just from me throwing up the night before. But why am I itchy? Why is my face hot? I don't have a fever.. no swelling.. no lymph nodes swelling or extremities. My throat hurts a little. But this just started last night. The rash has only spread to my neck but I'm itchy further down with no redness or spots like my face??
I take an antihistamine every day for asthma management so it probably is helping with any swelling.. My neurologist office squeezed me in today with a different doctor and confirmed I caught DRESS very very early. My worst nightmare, I was even worried that this would happen with just lamotrigine.. We agreed that I'm going to no longer take xcopri anymore, no titration down needed due to the small dosage, and I put a rush to my blood work to get done today, I wanted make sure any of my vital organs havent been effected and the xcopri is still in my bloodstream for the most accurate reading.
I'm unsure if anyone is familiar.. DRESS is life threatening and presents itself in many ways, particularly as a rash starting on the upper body and face, in my case, 2-8 weeks during whichever new drug you're taking (a lot of seizure drugs have this warning). I'm only 24. This is scary. I wish there was another way beyond VNS. Regardless, reading up on it, having asthma does not make me a good candidate. I haven't tried the oral suspension options yet, as much as I don't want to (yuck) but it sounds like it's on the itinerary soon.
I just want to cry. I knew this road is tough and was going to be hard. If anyone else has experienced DRESS... I'm here with you, you're not alone. This is tough. And I'm even more sorry if you or your loved ones caught it too late..