David C. Fajgenbaum was diagnosed with Castleman disease in 2010 and failed to respond to the only approved drug.
A scientist from Philadelphia with a rare and fatal disease went into remission after using an experimental treatment on himself. David C. Fajgenbaum, from the University of Pennsylvania School of Medicine, was diagnosed with Castleman disease in 2010. After failing to respond to traditional treatment, he took matters into his own hands.
After researching his own condition, Fajgenbaum realized another, already existing drug could help. With the help of his physician Thomas S. Uldrick, he looked at therapies that targeted a specific pathway—PI3K/Akt/mTOR—finding a drug that already existed, called sirolimus. He said there were many risks involved—it could have triggered a deadly relapse—and he was not confident it would work."But there were no other promising leads," he said.shows how Fajgenbaum—along with two other patients—went into sustained remission.to test sirolimus on 24 patients with iMCD. Participants will be given the drug every day for a year. Results are expected in 2022.
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