Wednesday, May 10, 2017

Lamotrigine and Stevens Johnson syndrome

“I never lost anybody close to me, but that’s what it feels like.”

When 26-year-old Khaliah Shaw looks at pictures of herself from three years ago, she doesn’t recognize that person from before. Before her skin burned from the inside out. Before her sweat glands melted. Before the medically-induced coma.

Before the mistake.

“I didn’t have to have people staring at me or wondering why I look different,” she said. “Three years ago, my life changed forever.”

In 2014, Shaw went to a doctor’s office because she felt depressed.  She received a prescription for lamotrigine. A pending lawsuit claims Shaw received the wrong dosage, and her pharmacy didn’t catch it.

For the first two weeks, “everything was ok.”

And then it wasn’t.

Blisters broke out all over her body. “I was in excruciating pain. It felt like I was on fire,” she said.

She was diagnosed with Stevens Johnson Syndrome a rare serious skin disorder. It's usually caused by reaction to a medication or an incorrect dosage.

“It essentially causes your body to burn from the inside out and you pretty much just melt,” said Shaw.

The syndrome has left Shaw’s previously flawless skin burned and scarred. She is slowing losing her vision. Her sweat glands are gone, and her finger nails will never grow back.

“This did not have to happen. This was not just some sort of fluke in my opinion. This happened as a directly result of somebody’s error,” said Shaw. 

Shaw spent five weeks in medically induced coma while her skin slowly peeled off. There is no cure for Stevens Johnson Syndrome, and she could relapse.

“They’re telling me this could happen again, and they’re telling me if it did happen again, that it would be worse,” said Shaw.

According to the lawsuit filed on her behalf, medical bills have already reached more than $3.45 million. Extensive and prolonged medical care are expected to continue to add to those bills.

Shaw is represented by two attorneys, Trent Speckhals and Robert Roll, both specialize in medication error litigation.

“We continue to see the same errors over and over. [They’re] typically the result of pharmacists being too rushed, too busy, filling too many prescriptions and the use of [pharmacy] techs that really don’t have the training and the ability that a pharmacist would," Speckhals said. "That’s one of the sad things, shocking things about it. It continues to happen at an alarming rate."

"I never heard of Steven Johnson Syndrome until I was in the hospital with my skin melting off of my body. That’s when I learned what it was," Shaw said. It's a lesson she says no one should have to learn. "It's important to know what's in your body."

Courtesy of a colleague


  1. I transitioned a 14 year old adolescent male from levetiracetam to oxcarbazepine to treat episodes of ambiguous character. 2 weeks after oxcarbazepine was initiated, he developed Steven-Johnson syndrome, leading to an initial PICU admission followed by transfer to a burn unit. There were burns over 90% of the body. Eventually he recovered without overt sequelae.

  2. By Khaliah, Aug 25 2014 09:26PM
    Sooooooo...I am happy to announce that all my corrective surgeries are FINALLY behind me! I was very nervous to go back under the knife but PRAISE THE LORD I am DONE! Sometimes, I am truly amazed at what my body has been through and what my body is capable of doing! I have watched myself heal these last couple months and it is simply amazing. To see wounds the pigment in my skin sloooooooowly coming hair's crazy! And every day, I find something else that has gotten a little better!

    There's still some things I am patiently (sarcasm) waiting on! My eyes still give me so much trouble! However, I am prepared for that to be something I have to deal with moving forward. It's hard because I am still concerned about how this will affect my ability to take photographs like I used to, but so far I've somehow figured out a way to make it work!

    Almost got this walking thing completely down! It may not look like I have a problem to the average person, but my PTs LOVE to creep on me and correct every wrong step that I take! Love them. I'm not far from perfect though...just a little bit more practice and I'll be ready to fly!

    Recently, I've noticed my joints are really achy! Like to the point that I feel like a granny sometimes! It amazes me that no part of my body went untouched by SJS and sometimes I wonder, "what's next!!!!!?" As I said earlier, all my corrective procedures are done and behind me. But my latest procedure brought to light an issue I knew would come sooner or later.

    I had oral surgery to detach where my tongue had fused to my jaw and extract a tooth. So, my surgeon prescribed an antibiotic as a preventative measure and of course gave me some pain meds. I didn't really know how I was going to handle taking medication going forward since obviously medication is how I got here in the first place. Needless to say, I am OVERLY cautious and looked up the medicine to see if it was associated with SJS and to my surprise, it was! Why was I surprised!? Because it shocks me that healthcare providers still try to give me drugs that are associated with SJS. Like of ALL PATIENTS, I am NOT the one they should just flippantly give SJS poison to. And I realize that any medication can cause it, but there are some that are safe-er and there are some that are KNOWN for causing it!

    So of course I call the surgeon and he tells me "I prescribed that medication to you because it is the best form of preventative care. The chances of it causing SJS is unlikely, but the choice is yours."

    It took everything in me not to flip ALL the way OUT! The words "rare" and "unlikely" don't mean ANYTHING to a person who literally lost their skin because of a pill! MY SKIN! And not just my skin but EVERYTHING in my body was ruined! It TERRIFIES me to think about having another SJS episode because I know I will not survive if it happened again. I literally feel like I'm holding a loaded gun when I touch medication. And taking it feels like playing Russian roulette. I opted to take my chances at getting an infection because I don't care what anyone says, NOTHING is worse than being burned alive and living to tell about it.

    It still haunts me to think about everything they did to me while I was in the hospital. I can still hear the IV machines beeping and I can still taste that disgusting crap they put in my feeding tube that made me PUKE every single time. I never want to end up in the burn unit EVER again. There are still things I avoid to this day because it reminds me of that time. And no amount of discomfort is worth getting SJS again. NONE.