What Patients with Lupus Want You to Know

During a series of interviews with patients who have systemic lupus erythematosus, issues related to medication side effects, supplement use, depression and support groups arose, as well as concerns about race and activities of daily living. The interviews gave me a better understanding of what patients with lupus wish their physicians knew. I am grateful to the patients who shared their experiences with me, and in this article, I share what I learned in the hope that other physicians find the information helpful in providing care for patients with lupus.

Medication Side Effects

Surprisingly, many patients I talked to during my interviews could not name a side effect of their medication(s). This made me question whether enough is being done to educate patients. Patients are asked questions to evaluate for possible side effects during their visits, but are they informed about what side effects to look out for?

One patient said, “Many people don’t read the handouts. I would prefer hearing from my physician about what side effects I could develop from my medications.”

With this in mind, emphasis should be placed on educating patients during visits instead of solely handing them printouts, expecting them to read the material and educate themselves. Indeed, the percentage of patients reading these printouts and how much they understand are unknown. Therefore, it may be helpful for physicians to inform their patients about common side effects and provide them with printouts. Providing both will enhance patient education. Oral explanations during the visit allow patients to ask questions and discuss risks with their physicians, and printouts give patients a resource to refer to afterward.

Supplements

Physicians often review with patients the medications they prescribe. However, when patients feel medications have fallen short or have too many side effects, they start to look elsewhere for relief. Some patients order supplements that are advertised online. They presume these supplements are safe because they don’t require a prescription. Physicians must know what kinds of supplements are advertised to patients and be able to advise them about their effects and safety.

One patient said, “There are a few supplements that I have found on my own online that I have been taking.”

Peer-reviewed data documenting the use of supplements among rheumatology patients are limited. One survey questionnaire found that 30.6% of rheumatology and internal medicine patients reported using a supplement within the past two years.¹ As the use of supplements continues to grow, it is becoming increasingly important for physicians to initiate conversations with their patients on supplements and their safety.