Understanding and finding the best care for the varying symptoms of sarcoidosis

MANAHAWKIN, N.J. (WPVI) -- Sarcoidosis is an immune system ailment that only got its name a century ago.

And doctors are continually learning about this disorder, which can vary so much from one patient to another.

Joe Mazzatta of Manahawkin, N.J. is learning himself.

"I started developing a cough," Mazzatta recalls.

And he couldn't get rid of it.

After a variety of lung scans, doctors thought Joe had either tuberculosis or lymphoma.

But there was one final test.

"We got a biopsy of a lymph node and the lymph node showed sarcoidosis," says Mazzatta.

He'd never even heard of it.

"Any organ system of the body can be affected," says pulmonologist Dr. Rohit Gupta of the Temple Lung Center.

Dr. Gupta says the heart, nervous system, skin, or eyes can be involved, but the lungs are the most common spot.

"Around 90% of the patients' lungs are involved or the lymph nodes around the lungs are involved," says Dr. Gupta.

Sarcoidosis is rare.

However, it's more common among those of African and Scandinavian descent.

The symptoms and severity vary, and what triggers it is unknown.

"Patients can present with different types of symptoms, and their progression can be different," says Dr. Gupta, adding, "Inflammation is the key aspect."

Therefore, the treatment emphasizes controlling that.

Clusters of immune cells called granulomas infiltrate organs and lymph nodes.

Breathing problems put Joe into the hospital several times and stressed his heart.

"A simple walk from my couch to the bathroom. That would take my heart rate and shoot it up to like 220," Joe recalls.

Early on, Joe sought out the Temple Lung Center, feeling the expertise to maintain his active life was beyond his local doctors in central New Jersey.

"I was seeing a local pulmonologist and I just wasn't comfortable with his knowledge or care," he recalls.

Getting into Temple's Lung Center took a little time, but, once he did, it changed everything.

Over the past three years, Dr. Gupta and Mazzatta have worked together, trying to find the right drug balance to control the granulomas and symptoms - and side effects.

"We kind of got to keep hitting it at all different kinds of angles," says Joe.

He is now on a once-a-month infusion, as they try to dial down doses of the steroid prednisone.

"Prednisone has been saving my life. It's a blessing and a curse all at the same time because it does so much good. But it also has so many long-term bad side effects," says Mazzatta.

Dr. Gupta says sarcoidosis can resolve with long-term treatment.

In the meantime, Joe stays positive, mountain biking and exercising.

"Towards the summer, I try to do, 100 miles a week or so," he notes. "I ski, at least 50 days a year."

Dr. Gupta says patients should stay active,

"My general suggestion to patients is for a good lifestyle. So that includes exercise that includes healthy eating, good sleep, stress management," he says.

He notes that the face of sarcoidosis is changing, even as doctors make inroads into understanding it.

"We used to say that it is a disease of the young. We are increasingly seeing the disease in elderly patient groups as well," he observes.

Dr. Gupta says Temple is among the centers with many studies underway on all aspects of sarcoidosis.