Off-Label Treatment Shows Promise for Sarcoidosis

If current estimates are correct, around 10% of people with sarcoidosis within the United States are using off-label TNF-alpha inhibitors such as Remicade (infliximab). But according to an article in Sarcoidosis News, this isn’t necessarily a bad thing. Normally, the standards-of-care for sarcoidosis include corticosteroids and immunosuppressants. But a subset of patients don’t respond to these treatments. These patients, however, could benefit from off-label TNF-alpha inhibitors.

In a study, published in the European Journal of Internal Medicine, the research team explored the use of TNF-alpha inhibitors within this patient population. The researchers performed a meta-analysis of published studies, which included data from 398 individuals living with sarcoidosis. Within the studies, the research team evaluated the efficacy of Remicade, Enbrel (etanercept), Humira (adalimumab), and a combination of Simponi (golimumab) and Stelara (ustekinumab). Findings show that:

  • 69.9% of people with pulmonary sarcoidosis saw lowered symptoms or reduced/stopped disease progression while on TNF-alpha inhibitors, as compared to 74.5% of those with extrapulmonary sarcoidosis. Extrapulmonary sarcoidosis means that patients have symptoms that go beyond simply pulmonary involvement. 
  • Remicade showed extreme efficacy in both patient populations, with a higher efficacy in the extrapulmonary sarcoidosis group. 
  • While Etanercept was mildly beneficial for people with pulmonary sarcoidosis, it showed a much higher efficacy for those with ocular symptoms. 
  • Humira helped reduce or stabilize sarcoidosis in 60% of those taking it. 
  • While Simponi and Stelara improved skin-related symptoms in 32% of patients, the research team ultimately recommended that these are not used for treatment within this population. 

Although more research is needed, particularly in a clinical setting, these do suggest that TNF-alpha inhibitors could support patients in need. 

So What is Sarcoidosis? 

Sarcoidosis is a rare disease in which clumps of inflammatory cells called granulomas form throughout the body, most often in the skin, lungs, or lymph nodes. However, these granulomas may form in organs throughout the body. The exact cause of sarcoidosis is unknown. Many hypothesize that it results from the immune system overreacting to an unknown or abnormal substance within the body. People with pulmonary sarcoidosis are at risk of developing pulmonary fibrosis. 

Many people with sarcoidosis are asymptomatic. If symptoms appear, they may include:

  • Shortness of breath
  • Chest pain
  • Coughing or wheezing
  • Fatigue
  • Depression 
  • Swollen lymph nodes
  • Unintentional weight loss 
  • Lesions on the nose, cheeks, and ears
  • Eye pain or redness
  • Blurred vision

Please note that this is not an exhaustive list of symptoms. Additionally, many people with sarcoidosis recover without any long-term effects. Over 50% of people enter into remission within three years of diagnosis.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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