I woke up this morning and forgot to take my medicine. That was a great sign; it meant the dose of prednisone I had settled upon was working because the first thing on my mind was coffee–not pain relief. For the last few days I’d been increasing the dose by .5 each morning. I was trying to hit the ideal number that would tamp down the lupus flare and yet not be more than was essential to keep my symptoms under control.
I’m fortunate in that see-sawing between really low-dose prednisone and none at all works to keep my lupus manageable. Having “mild” lupus–which I do–can be a mixed blessing, though. Because symptoms can be so vague and diffuse that a physician may dismiss them. Which is what happened to me in the past. Only after a series of events landed me in the emergency room several times did I receive effective care. And then the care was forthcoming only because a skilled physician pieced together the bits of my rather atypical lupus puzzle.
I understand that physicians are reluctant to treat what appears to be mild lupus, or a lupus-like illness, because medications that control lupus have serious risks associated with them. Dr. Amanda Steiman of the Canadian Rheumatology Association explains a doctor’s dilemma in deciding to treat patients with lupus. In a Journal of Rheumatology article entitled Clinically active serologically quiescent systemic lupus erythematosus, Dr. Steiman describes a study that looked at lupus patients who tested positive for the disease (had anti-double stranded DNA and/or hypocomplementemia) but who did not otherwise appear to have active lupus–their disease was “clinically quiescent”.
At the end of the study, Dr. Steiman, and her colleagues, concluded that long-term lupus patients often suffer greater morbidity (organ damage) from their medications than they do from the disease itself. Given the danger that lupus medication poses to patients, Doctor Steiman wanted to learn whether patients who do not express symptoms–are clinically quiescent–suffer invisible damage over time. A trial was instituted in which patients without symptoms but with positive lab results were given no medication–with the exception of anti-malarials.
The results were instructive; it turned out that in the clinically quiescent group, extremely low rates of damage had occurred. Thus, the recommendation coming out of this study was that patients who do not have clinically active lupus but do test postitive for disease not be given treatment. However, the recommendation includes the following proviso: this group of patients should be closely surveilled so that any change in condition can be addressed promptly.
In another study from Canada, Clinically Active Serologically Quiescent Systemic Lupus Erythematosus, the reverse situation was examined: patients had lab results that did not indicate active lupus but these patients did present with clinically active lupus–that is, they had symptoms. These “clinically active, serologically quiescent” patients were followed for a number of years. The conclusion reached by researchers who looked at this group was: lab reports do not always correlate with lupus activity. The authors advise that some lupus patients (“the minority”) may have medical profiles in which blood tests and clinical activity are “discordant”. In other words, using laboratory exams to assess the degree of illness for a patient is not always reliable. Therefore, “…monitoring both clinical and serological features in patients with SLE is important.”
As both of these studies show, it is difficult to track lupus disease activity and to decide whether or not to treat. Doctors have a number of tools to help them assess activity (BILAG and SLEDAI, for example). However, even with these metrics at their disposal, doctors must still make independent assessments of each patient’s needs.
In my case, happily, everything worked out–eventually. A very good doctor put together the pieces of my lupus puzzle and gave me, at long last, excellent medical advice. The doctor and I did not hit on the right formula immediately; first we tried hydroxychloroquine, but that didn’t pan out because of side effects. Then he recommended I try azathioprine, but that didn’t suit me because I’d had a bout of pancreatitis and there is an elevated risk of pancreatitis with azathioprine therapy.
So that’s how I came to be on a low-dose prednisone see-saw.
Perhaps my doctor and I have not decided wisely. It’s impossible to know for sure how things might have turned out if we’d chosen a different path. What I do know is this: medicine is always a balance of risk and rewards, with a little mystery mixed in. When it comes to lupus, the mystery is magnified. The most skilled doctors analyze the latest research and then do what good medicine requires: they look at each patient’s unique situation and adjust treatment accordingly