A State of the Art Paper on Sarcoidosis has highlighted the need for more advocacy and research around the aetiology, prevention and management of the disease.
The TSANZ resource, also summarised in the MJA, is the first update on sarcoidosis for over a decade and the first written in Australia.
Lead author Professor Paul Thomas told the limbic that some advances, such as whole body PET scans to identify local disease activity, were difficult to access as they were not reimbursed for sarcoidosis.
However endobronchial ultrasound guided fine needle aspiration of lymph nodes was working quite well for diagnosing people with sarcoidosis.
“In terms of monitoring people with sarcoidosis we don’t have any specific new measures, and it would be good to get some more innovative way of looking at the inflammation, particularly in the lungs from our perspective, but also any other markers of systemic sarcoidosis would be good.”
Professor Thomas, from the department of respiratory medicine at the Prince of Wales Hospital in Sydney, said it was important to have biomarkers that could distinguish active disease from more indolent disease as many patients would not need any treatment.
“It depends how florid the disease is. If it presents acutely, they might require treatment but if the disease appears to be either indolent or has come on acutely and is regressing, then you wouldn’t want to add treatment especially steroids and drugs like methotrexate and mycophenolate which have significant side effects. You don’t want to be treating something which is going away already.”
Professor Thomas many patients went undiagnosed or presented with non-specific symptoms such as chronic tiredness. Other patients presented with eye symptoms, a dry cough or unexplained lymphadenopathy,
Elevated serum angiotensin-converting enzyme (ACE) might a clue to further investigations but had modest sensitivity and specificity for diagnosis.