SJS Patient: "I Thought I Was Dying"

March 5, 2011, 1:30PM. By Heidi Turner

Phoenix, AZIn the two years since she developed Stevens Johnson Syndrome, Laura L. says she has been in and out of the hospital for tests, MRIs and health problems. She says she is lucky to have survived her SJS ordeal, because many people do not, but she will suffer lasting effects from the Stevens Johnson Syndrome and the SJS rash.

"I had been depressed for a while and was diagnosed as bipolar," Laura says. "I was on Zoloft but the doctor prescribed me Abilify. Right after I started taking Abilify, I began gaining weight. I was eating ravenously. I went to a normal check-up and the doctor saw that I gained more weight than was normal in a month. I was given a diabetic test. The doctor said she wanted to give me medication because my sugar was a little high. She gave me metformin.

"A few weeks later, I had another diabetes test and the doctor said my sugar had gone up a couple of points. She told me to watch my weight. I was ravenous—I was starving all the time. I wasn't feeling well and I was gaining weight. At this point I was considered borderline diabetic. Around the 10th week, I went through cycles of having a 103-degree fever, feeling terrible, then having my temperature drop to normal.

"Then I got this red spot in my eye. I thought it was pink eye. I went to urgent care and they gave me drops. The next day both eyes were inflamed and bright red. My mouth was sandpapery and blistered. I went to the hospital and they sent me home and told me to stop using the eye drops.

"Two days later, I had a rash on my face and neck, drifting down my body, in my ears and on my hands and feet. They admitted me to the hospital and did a biopsy and tests. I was still on Abilify at this point. They thought it was the borderline diabetes and the food I was eating that caused this. They released me from the hospital one week later because they couldn't find anything wrong with me.

"I felt like I was going to die. I kept seeing a bright light, I was ill and thirsty—I thought I was dying. So I went to a different hospital. Four hours later, I was diagnosed with Stevens Johnson Syndrome. My blood sugar was 1,000 and I had to start taking insulin. I was in that hospital for about 10 days. My whole body peeled from head to toe. The skin on my hands and feet sloughed off. The rash was like the texture of cantaloupe skin but was bright red. My face was huge, round, swollen and red.

"I'm lucky the rash didn't get more extreme. The doctors said they caught it in time. But, the SJS attacked my endocrine system. Now, there's a cyst on my pituitary gland, cysts on my ovaries and my reproductive organs have stopped working. My adrenal glands are compromised. The doctors say they're not positive, but they're pretty sure this is linked to the SJS. It attacked the endocrine system in my body and shut it down. I've had a cyst on my kidney that was drained and I have MRIs every few months to monitor my cysts.

"I got an infection of my thigh that required debridement [a procedure in which dead, dying or infected tissue is removed], so now I have a large scar on my thigh.

"After I was released from the hospital, I was sent to a nursing home to live for four months because the doctors wanted to make sure the SJS didn't get worse and to teach me how to take the insulin. I'm now insulin dependent because my pancreas no longer works. Doctors said it's rare that a woman my age would contract type-1 diabetes. They can't track it back to that, but it correlates with the timing of the SJS. The doctors said SJS is known to attack systems in the body, mine just happened to attack the endocrine system.

"At the second hospital, they said that the SJS was due to the Abilify. Needless to say, I don't take Abilify any more. They took me off all depression medications at the time. I found out later that the hunger was because my body wasn't using food as energy; it was just storing it as fat because my pancreas wasn't working. I put on 30 pounds in three months, easily.

"It's been a rough two years. I would have died had I not gone to another hospital. If you don't feel right, get another opinion."