For many patients with Sjogren's, Plaquenil (hydroxychloroquine) has long been the go to drug that their doctors prescribe. It is often the first line of attack before other more aggressive therapies are added such as methotrexate or rituximab that have bigger impacts on the immune system.
The other day one of my favorite bloggers, Julia from Reasonably Well, wrote about how she's been feeling since discontinuing her Plaquenil.
I can tell that my meds have changed. I had almost (but not quite) forgotten what these aches and pains feel like, but they're back…I am re-acquainting myself with those symptoms that it tames: the overall flu-like and feverish feeling -- aka malaise -- and joint pain." (Click here to read more).
I had a similar experience when I stopped taking plaquenil. It was one of those situations where I didn't realize the medication was having such an impact until I stopped it. My joint and muscle pain went up and my energy levels went down. Did the drug eradicate my fatigue and pain? No, but it did alleviate some of the symptoms and improve my quality of life. I have been on enough drugs to know when one helps.
So I was very interested when I saw on Twitter this study presented at both the American College of Rheumatology (ACR) and the European League Against Rheumatism's (EULAR) annual meetings: Inefficacy of Hydroxychloroquine in Primary Sjogren's Syndrome: Results of the Joquer Randomized Placebo-Controlled Trial in Primary Sjogren's Syndrome. Yes, that's a mouthful, but for those of us with Sjogren's and on plaquenil, it's a subject that's pretty relevant.
I haven't yet been able to find a published article with the study findings, but I was able to access the abstract. The key findings cited: At six months, 19.2% of patients receiving placebo and 19.6% of patients treated with HQ had a favorable response….No significant difference was observed in the evolution of systemic disease activity, dryness symptoms and quality of life. (Click here and go to L9 to read the abstract).
To summarize, the study found that at six months hydroxychlorquine (plaquenil) had no impact on a range of Sjogren's symptoms nor on disease progression. While previous studies of the drug's effectiveness have been mixed, this study is considered important because it was placebo controlled, done with a larger population (still only 120 patients), and occurred over a 6 month period.
So what does this mean for those of us who are having some success with plaquenil? I'm really not sure. To start with, until the results are fully published it is hard to know what the complete findings were. For instance, I have since found other references (like this from the Journal of Musculosketal Medicine) which indicate that the complete results are less clear than the abstract--that patients who took the drug for one year did have significant improvements. I'm assuming full publication will help clarify some of these points.
I am always very excited to hear about new Sjogren's studies, but given the limited information available I was a bit concerned to see some of the early reaction online. I have already seen a few doctors--on Twitter and in podcasts -- making reference to the same findings I have seen, with some indicating it may cause them to revise their treatments for Sjoggies.
This gave me pause. I'm just one patient, but I would urge caution to anyone currently treating patients with the drug. I have first hand knowledge of the benefits of the drug and know from several other Sjogren's patients have seen them as well; in short the drug has helped at least some of us. Since there are so few treatments available, it seems important to have plaquenil as an option for others seeking relief for their symptoms until other treatments are available. Taking one arrow out of an already thin quiver doesn't seem like progress.
While watching my doctors at work, I've observed that part of treating patients with autoimmune disease involves trial and error. I don't view this as an argument against evidence based medicine but rather an indication of the importance of clinical judgement when treating patients with the same disease diagnosis but divergent symptoms and disease trajectory. I don't see how 60 patients (number of study patients given plaquenil) can encompass all the variant manifestations of the disease.
I hope doctors and scientists use this research as a motivation to do further studies on Sjogren's, as opposed to considering the issue of plaquenil settled. We just know so little about this whole disease that I hope each piece of knowledge we gain is seen for what it is--a little bit of a puzzle revealed, but one that will take years and many studies to become clear. Hopefully, one day in the not to distance future, newer, more effective treatments will make this whole thread irrelevant.
Have you taken plaquenil and what was your experience?