HCQ I - how the shortage highlights Sjogren's neglect
Updated: Jul 7
HCQ = hydroxychloroquine, brand name "Plaquenil"
During the peak of the recent HCQ shortage, the American College of Rheumatology (ACR) failed to mention Sjogren’s in its statement about the importance of ongoing access to this drug. Rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE) have been repeatedly highlighted by the ACR and the media as the two diseases that are treated with HCQ. Yet HCQ is the primary drug used to treat Sjogren’s. Once again, Sjogren’s was ignored and dismissed by the ACR, despite being common, serious, and systemic. Many rheumatologists remain unaware that Clinical Practice Guidelines (CPGs) from multiple countries now recommend HCQ use for many Sjogren’s patients.
Rheumatologists sometimes refuse to prescribe HCQ, quoting a single, poorly designed study that showed that “it does not work for Sjogren’s.” I will discuss this and other studies in future blog posts. These rheumatologists are probably not familiar with the design flaws of the few studies that look at HCQ treatment of Sjogren’s.
In contrast, HCQ has been extensively studied in both SLE and RA over the years. In 1956, the FDA approved it as a treatment for both diseases. Studies from that era would be unlikely to pass muster today. The excuse that HCQ should not be used because it is not FDA-approved for Sjogren’s makes no sense. It has been used off-label for Sjogren’s with good clinical results for 30 years. The current expert-derived CPGs lay out indications for its use.
Multiple studies have shown HCQ to be remarkably beneficial for treating SLE, Sjogren’s closest biologic cousin. It reduces lupus flares, progression, complications, and mortality by about 50 %. Most of these studies took place after the drug was off patent. In other words, HCQ research managed to get done despite no obvious financial incentive. SLE definitely deserves this attention: downturns can be rapid, severe, and fatal, even at young ages.
In contrast to SLE, life-threatening Sjogren’s manifestations (lung disease, lymphoma, and others) tend to be less dramatic and slower to develop. But they do happen to a significant number of patients. Despite the serious complications that can occur, many rheumatologists do not offer comprehensive Sjogren's care, monitoring, or prevention. Rheumatologists need to do better!
In future blog posts, I will explain:
what is known and not known about HCQ treatment for Sjogren’s.
why studies to date are inadequate to answer important questions about HCQ benefits in Sjogren’s.
US Patients: Why you should take this survey, even if you have never taken hydroxychloroquine
Your participation will help the Sjogren’s Foundation advocate for our disease with researchers, the ACR, and others. The ACR is the main source of clinical guidance for many U.S. rheumatologists. The failure of the ACR to promote CPGs and up-to-date Sjogren’s care contributes to the suboptimal care that so many patients experience.