Problems with Stevens Johnson Syndrome Stem from Lack of Awareness

September 13, 2015, 1:30PM. By Heidi Turner

Savannah, GAAugust was Stevens Johnson Syndrome (SJS) awareness month, but many people are still unaware of the risk of developing SJS after taking medication. Lawsuits have been filed against the makers of some medications, alleging the drugmakers are not doing their part to alert patients about the risk of SJS linked to medications. They say that a lack of a warning, combined with a lack of awareness on the part of patients and doctors, puts patient’s lives in jeopardy.

Highlighting the difficulty patients and doctors have of recognizing SJS is the story of Rebecca Bush, recounted by Savannah Now (8/26/15). Bush was given a shot of Prednisone during a visit to a medical clinic, which is when serious problems began. Shortly after the shot, Bush stopped eating. Her family took her to a clinic thinking she was dehydrated. At the clinic, a nurse told Bush’s family to get her to a hospital because she was about to go into diabetic coma. Bush was admitted to the hospital with what doctors thought was dehydration linked to diabetes.

Around that time, Bush’s skin started to blister and slough off. She was told to use lotion, which made the situation worse. Bush was then released to rehabilitation but it took only two days before she was back in the hospital. A new doctor, who specializes in internal medicine, was unable to diagnose her. Finally, an infectious disease specialist sent out some tests and came back with an SJS diagnosis, likely an allergic reaction to medication Bush was given.

See Video on How Doctors Can Miss SJS Diagnosis

It took three more weeks in the ICU and four more months in the hospital before Bush could be released. She lost, according to reports, all her skin and her hair, but does not remember her ordeal. When she was first released from the hospital, she could not walk and had to be put on dialysis. Bush has since recovered enough that she can walk with the help of a walker and has kidney function again.

Stevens Johnson Syndrome is a severe allergic reaction to medication that causes burn-like symptoms on the patient’s skin and can damage internal organs. It can arise even with medications that have previously been tolerated. A major concern about Stevens Johnson Syndrome is that it’s often misdiagnosed; according to reports, around 75 percent of doctors misdiagnose the disease. Patients initially experience flu-like symptoms and may even be prescribed the same medication that caused the allergic reaction. That, combined with a delay in diagnosis, puts the patient’s life in even more jeopardy.

Although doctors can treat the burn-like symptoms, depending on how severe they are, there is no way to stop SJS once it has started until the medication has left the patient’s system.

Some patients have filed lawsuits against the makers of medications linked to SJS, arguing they were not adequately warned about the risks of taking the medication. Rather than warning about SJS specifically, for example, some medications warn only about the risk of developing an allergic reaction, such as a rash. Patients say they had no idea the allergic reaction could be so devastating and would have stopped taking the medication completely had they known.

Even those who survive SJS may suffer permanent injury including organ damage, blindness and scarring. One such patient, Samantha Reckis, was awarded $50 million after her ordeal, which began when she was seven years old. Reckis, who at the time took three doses of Children’s Motrin, alleged the Motrin caused her SJS and toxic epidermal necrolysis (TEN, a more severe form of SJS), which left her blind and unable to have children.

“One lawsuit concerning Children’s Motrin went to trial this week. The parents of Riley Brown, who developed SJS/TEN when she was three years old, filed the lawsuit on the girl’s behalf. During her ordeal, approximately 30 percent of Brown’s skin - including her neck, face, back and extremities - was affected by the SJS. She has reportedly suffered blindness in one eye, loss of skin and permanent scarring.

The lawsuit is case number 12-4929, in the US District Court for the Eastern District of Pennsylvania.