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Plaquenil, or hydroxychloroquine, a DMARD [Disease-Modifying Anti-Rheumatic Drug], is often one of the first medications prescribed once a diagnosis of Sjogren's Syndrome is made. I have been taking this drug for ten years. For me, it seems to decrease some of the joint pain and overall malaise associated with Sjogren's syndrome. So I was interested to see that this commonly used medication was the focus of a recent study found here:
Salivary and serum B-cell activating factor (BAFF) levels after hydroxychloroquine treatment in primary Sjögren's syndrome.
Mumcu G, et al.
Journal
Oral Health Prev Dent. 2013;11(3):229-34
PURPOSE: Some evidence implicates a role of hydroxychloroquine (HQ) in the management of Sjögren's syndrome. This study evaluated the effect of HQ on saliva B-cell activating factor (BAFF) levels as well as health related quality of life (QoL) in patients with primary Sjögren's syndrome (pSS).
CONCLUSION: Salivary and serum BAFF levels were lowered in patients with pSS when treated with HQ. In addition, decreased disease activity and increased salivary flows can be achieved with HQ in pSS patients. (Bolding mine).
Interesting. BAFF or B cell activating factor is thought to be an important link in the immune system. It's part of a very complex chain of events, but here's a simplistic explanation, found here: An excess of BAFF leads to the development of autoimmune disorders in animal models, and high levels of BAFF have been detected in the serum of patients with various autoimmune conditions.
Plaquenil induced reduction in BAFF levels may indicate a decrease in autoimmune activity, which is a very good thing, needless to say. Plaquenil use is not without side effects and risk, but for those of us able to tolerate it's administration, studies such as these help us understand what the mechanism of it's action actually is.
6 comments:
Julia, I have been taking it for 5 months now and have begun to see just those improvements myself. For me, increased saliva was one of the first improvements. And , joy, O joy, in the last week I have also seen an improvement general fatigue. Also for me it has stopped my hair loss. Now if it will just grow back in... Still, Yay, more energy and much less Biotene Dry Mouth spray use! And I only have to take Motrin in the morning and before bed, not twice in between as before. So far this medication is a big blessing for me.
Julia, thank you for highlighting this article! My previous rheumatologist believed in using Plaquenil for Sjogren's and had me on it for the past three years. Unfortunately, he recently left the practice, and the new rheumatologist wants me to quit Plaquenil immediately because she says it is not effective for Sjogren's. I think it does help me a little, and I'm unwilling to stop taking it, so I guess it's time to find a different rheumatologist.
Terrific article! I am one of those "special" Sjogren patients who subsequently developed lymphoma/leukemia (no idea whether it is related or if I just get a double whammy!). I have been wondering whether it is OK to continue taking Plaquenil, which helped tremendously with my joint pain and dry eyes, in light of my other diagnosis. If I am reading the article correctly, Plaquenil might even help in my situation. I think I will print this out and bring it to my next doctor visit! Thanks for continuing to educate us!
Hi Julia
Thanks for posting this. I've been on this for 5 years now. My Doctor told me to try weaning off of it to see what would happen. I've has issues with dry eyes, dry mouth, some aches and pains but not too bad, and vasculitis in my lower legs (this aspect bothers me the most, especially in the summer). When I cut it out completely my vasculitis was much worse than usual and I was more achy. I now take half a tablet a day (100mg) and I feel much better and my Vasculitis is now an occasional visitor and is not on my whole lower legs, just a small patch with scattered spots. Taking a half tablet has also stopped the diarrhea I would experience about 2 hours after taking the pill (with food at dinner time).
Anonymous, your doctor may only be referencing a couple of studies that stopped tracking progress at 6 months of use. Those studies are useless because it is well established that Plaquenil takes at least 6 months and up to 1 year sometimes for the full effect to be felt. Doctors frequently are not up to date on the latest information due to their very busy schedules and required after hours paperwork demanded by HMO bean counters. Sometimes they simply do not have the time or inclination to engage in the research to which patients are driven out of desperation in their search for answers to questions concerning their pain, fear, and uncertainty about their health. I hope you find a doctor that is willing to look at new and/or more complete studies and listen to your own experiences with respect.
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