Despite the best efforts of researchers to better estimate the course of this disease in a given patient, the prognosis of most remains hard to estimate. In about 60 percent of cases however, the granulomas will disappear over a period of 2-5 years and the patient will recover. Relapse with patients who experience remission is unlikely.
In other patients, the disease is progressive, causing scarring in affected organs and requiring ongoing treatment. Patients who fall into this category often greatly benefit from seeing doctors who see many patients with sarcoidosis in a given year. Since sarcoidosis is considered to be a rare disease, with about 200,000 people with sarcoidosis in the United States, many physicians do not have the experience or specialized knowledge to best treat advanced cases. If at any point during your journey you feel that your physician is not sure of the best treatment options, a second opinion may help. Use the FSR Physician Directory to find a knowledgeable physician and learn more about the best way in which to navigate treatment.
Signs that May Help Estimate Prognosis
Some signs your physician can look for that indicate a case that is more likely to burn out include:
- Sudden, short-lasted onset with erythema nodosum or classic lung findings (bilateral hilar lymphadenopathy)
- Young patients
- Sarcoidosis in white patients
Signs your physician may look for that warrant additional caution and monitoring include:
- Gradual onset of the inflammation that elicits symptoms and organ harm
- Granulomas affecting multiple organs
- Older patients
- Patients of African American descent
Please note that this does not represent an expansive list and not every patient will be represented by these trends. Overall, the disease mortality is about 5 percent. Those cases which warrant additional concerns are those involving the heart and those that cause severe scarring in the lungs, which can cause respiratory failure. Even with advanced scarring and cardiac involvement, however, lung and heart transplants have been successful in improving outcomes for patients with advanced sarcoidosis.
Ongoing research studies, especially those aimed at collecting information about how patients are doing over time, continue to improve our understanding of sarcoidosis and estimates of how patients will do. You can help researchers improve treatments and better understand sarcoidosis today by joining the FSR Patient Registry.