Hydroxychloroquine (generic Plaquenil) is often prescribed off-label by doctors for Sjogren’s Syndrome patients despite the fact that it has never been approved by governing agencies like the FDA. I myself have taken hydroxychloroquine for several years. Studies have generally found that hydroxychloroquine offers little benefit to SS patients, though these studies usually prioritized dryness symptoms; a continuing trend of earlier studies that considered SS as simply ‘dry eyes and mouth’ rather than the complex illness that it is. A literature review published in May of last year noted:
This systematic review showed that there is no significant difference between HCQ and placebo in the treatment of dry mouth and dry eye in pSS. Well-designed, randomized, controlled trials are needed to provide higher-quality evidence to confirm our findings, and future studies should focus on some other index or extraglandular measures, such as cutaneous manifestations, to further explore the therapeutic effect of HCQ in pSS.
However, a more recent study from November was brought to my attention that focused not on dryness symptoms, but on many of the other symptoms that can cause even more hardship for many SS patients. This study evaluated a group of 221 patients, of which 170 used hydroxychloroquine, and focused on extraglandular manifestations (pain, fatigue, etc.) and found significant benefits for the hydroxychloroquine group:
Overall, EGM were less frequent in those on HCQ therapy (36.5% vs 63.5%, p < 0.001). Considering each EGM individually, the following manifestations were more frequent in the non-treated group: arthritis (p < 0.001), fatigue (p < 0.001), purpura (p = 0.01), Raynaud phenomenon (p = 0.003), and hypergammaglobulinemia (p = 0.006)…The lower incidence of EGM was observed in patients on HCQ therapy supports its efficacy in pSS. However, further large scale prospective studies are needed to confirm these findings.
The group that did not use hydroxychloroquine had an ~57% higher incidence of extraglandular manifestations, including inflammatory arthritis (joint pain) and fatigue. While it is only a single study, it lends weight to the anecdotal evidence that while hydroxychloroquine may be less useful in treating dryness, SS patients (including myself) have seen benefits with regards to fatigue and pain. While some doctors dismiss hydroxychloroquine for SS patients due to failures in earlier studies, this study lends weight to the idea that hydroxychloroquine should be considered a front-line treatment for SS patients, particularly those for whom extraglandular symptoms are particularly troublesome.
Hydroxychloroquine has one of the best safety profiles of any medication used to treat autoimmune conditions, though regular eye exams and proper dosage are necessary due to a small risk of serious toxic retinopathy. With proper dosing, a major study found that the risk is low for the first 10 years of usage (<2%), but climbs over time, reaching ~20% at 20 years. Higher dosages (>5mg/kg daily) lead to higher risk levels. For a 60kg person (~132 lbs), 5mg/kg means 300mg daily. This site has a useful calculator to find your safe dose. If you are currently taking hydroxychloroquine above a safe level, consider lowering your dose below 5mg/kg. Personally, I hope that better medications are available before I even reach the 10 year mark which will allow me to discontinue use.