“If the issue were just to treat sarcoidosis, I would put everyone on 40 milligrams of prednisone, and every granuloma would be destroyed. But I'm not treating sarcoidosis disease. I'm treating the patient. And steroids cause too much toxicity and reduction in quality of life.”
Marc Judson, MD is Professor of Medicine, Albany Medical College, and a leading clinician‑researcher in sarcoidosis.
Sarcoidosis affects more than 200,000 people in the US, disqualifying it from being considered a “rare” disease, yet it remains under-recognized and underdiagnosed. It causes the body to form granulomas, aggregates of inflammatory cells, that can affect virtually any organ, making diagnosis complex.
About 95% of patients require biopsies. But as Dr Judson explains,
“There are about 50 diseases which have very similar histology... And of course, you can make a mistake.”
Many patients are initially told they might have cancer, creating a lasting emotional toll.
“At least 40% of the new patients I see mention the fear they experience when they were told they had a malignancy.”
Initially brought in to the Medical University of South Carolina to lead a lung transplant program, Dr Judson’s sarcoidosis research journey began when he noticed the underserved burden of sarcoidosis in South Carolina.
“I asked my chief at the time, ‘Who’s taking care of these patients?’... He said, ‘No one.’ So I just kind of took it upon myself.”
The clinic quickly became a center of both treatment and research, reflecting a model of adaptive, community-responsive medicine.
While not all sarcoidosis patients need treatment, as it isn't always progressive, steroids have traditionally been the first-line standard of care for those who need treatment.
“Many clinicians were trained that lower doses of steroids were ok, but there's a lot of subtle toxicity that is cumulative. It doesn't happen overnight or in a week, but over months and years, the weight gain, osteoporosis, and metabolic damage accumulate.
There are several studies, including one from our institution in over 600 sarcoidosis patients, that corticosteroids adversely affect quality of life to a tremendous degree."
Judson cites recent studies that have shown that even doses as low as 2.5 milligrams a day can cause significant increases in toxicity.
“In the last few years, there have been a number of papers that have shown that even doses as low as five milligrams a day, or 2.5 milligrams a day, caused a significant increase in toxicity."
There are increasing shifts toward steroid-sparing treatment regimens, with alternatives including methotrexate, azathioprine, leflunomide, antimalarials, and biologics.
A recent paper published in The New England Journal of Medicine has shown that methotrexate was non-inferior to prednisone when used as a first‑line treatment.
“If the issue was just to treat sarcoidosis, I would put everyone on 40 milligrams of prednisone, and every granuloma would be destroyed. But I'm not treating sarcoidosis disease. I'm treating the patient. And steroids cause too much toxicity and reduction in quality of life.”
This patient‑centered philosophy underpins his clinical practice and research, reframing steroid dosing from a focus on disease control to a holistic approach that prioritizes patient welfare. Tailoring therapy to each patient’s symptoms and priorities is key. Judson explains:
“One size doesn't fit all. If someone really is distraught, it's important to get the disease under control quickly, probably by using prednisone, and then adding another agent so the prednisone can be tapered.”
A recent study with “cough watches” revealed how urgently some patients seek relief. About 20 to 25% of patients were not willing to wait three days for a baseline cough assessment before starting steroid treatment, underscoring the pressing impact of symptoms.
Judson sees great value in tools that can help clinicians measure and monitor steroid‑toxicity, such as those in the Steritas STOXⓇ Suite.
Patient education matters too.
“I really do my due diligence and try to explain the side effects, but we’re all limited in our time, and the consulting room isn’t always the easy place for patients to absorb information.”
He welcomes support tools like Sam (steroidsandme.com) to help improve awareness and tracking.
“Any information you can give the patient, or any education, is of tremendous value.”
Judson believes the field is at a turning point. With new trials and community initiatives underway, sarcoidosis care is embracing a long-overdue shift.
“Steroid-toxicity really is a huge issue. The sarcoidosis community is working on a position statement on trying to eliminate steroid use. We're on the right track, maybe a little slower than rheumatology, but we're finally getting there.”
Marc Judson, MD is chief of the Division of Pulmonary and Critical Care Medicine at Albany Medical Center.
He is internationally known in the field of sarcoidosis, a disease of unknown cause that affects the lung and other organs of the body. He has published more than 100 articles related to sarcoidosis and runs one of the largest sarcoidosis clinics in the Northeast United States. He is also an ex officio member and past president of the Americas Association of Sarcoidosis and Other Granulomatous Disorders, whose mission is to act as an effective voice for physicians, scientists, and allied health professionals concerning issues related to sarcoidosis in the Americas.
Dr Judson's other areas of expertise include interstitial lung diseases and fungal lung diseases.