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Patients with rare lung disease face agonizing treatment dilemma
Date:4/17/2014

MAYWOOD, Il. (April 17, 2014) Doctors who treat patients with a severe and progressive respiratory disease called lymphangioleiomyomatosis (LAM) can face an agonizing treatment decision.

The drug sirolimus can slow progression of the disease and help relieve shortness of breath. But some patients eventually may need lung transplants, and sirolimus can cause potentially fatal complications following transplantation.

"It's a terrible situation," said pulmonologist Dr. Daniel Dilling, medical director of Loyola University Medical Center's LAM Clinic and Lung Transplantation program.

The Food and Drug Administration has issued a "Black Box" warning about the use of sirolimus in lung transplant patients, at least when started at the time of transplantation. Many physicians therefore do not use the drug in LAM patients once they go on the transplant waiting list, since it is uncertain when the operation will occur.

But a physician survey, an animal model and information about how the drug is metabolized suggest that a drug similar to sirolimus may be an option for LAM patients, according to a presentation Dilling made during the 34th Annual Meeting and Scientific Sessions of the International Society for Heart and Lung Transplantation in San Diego.

LAM occurs almost exclusively in women. An abnormal growth of muscle cells invades the lungs, eventually causing airways to become obstructed. Symptoms include shortness of breath, chest pain, chronic cough and pneumothoraces (lung collapses). As the disease progresses, many patients will need to go on oxygen, and some will require lung transplants.

LAM is uncommon, but not as rare as once thought. As many as 30,000 to 50,000 women worldwide may have the disease, according to the LAM Foundation.

Sirolimus belongs to the rapamycin class of drugs that also includes everolimus. According to a 2011 study published in the New England Journal of Medicine, sirolimus
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Contact: Jim Ritter
jritter@lumc.edu
708-216-2445
Loyola University Health System
Source:Eurekalert

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