The Exchange

Commentary and Observations from
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Scary Words in Rheumatology

Scary Words in Rheumatology

There are many rheumatology words that are difficult to pronounce, poorly understood, and that can generate fear in both practitioners and patients. As such, I wanted to share a few that were featured in an article titled "Rheumatology Etymology," in The Rheumatologist.

The diagnosis of lupus can make many patients sad and scared. Often, they believe they will have a long, slow journey of chronic unrelenting illness leading to an early demise. Additionally, they believe that treatments are often worse than the disease itself. The word and its history do little to ease that fear—medical usage of the word comes from the 14th century (from the Latin word for wolf). At that time, physicians described the symptoms as "a hungry wolf eating flesh"—certainly not a description that would put a patient at ease.

Another alarming feature in rheumatology is a positive anti-nuclear antibody (ANA). Those who practice in rheumatology know that most consults for a positive ANA do not lead to a diagnosis of lupus. However, patients and other practitioners may not. Lupus is not an easy diagnosis to make or to receive, and our job in rheumatology is often to accurately diagnose and reassure the patient.

Steroids can also be a scary word for patients to hear. Often, patients refuse to take steroids until lengthy explanations are provided as to the whys and risks vs benefits. As practitioners, we understand the side effects and try to use these drugs at the lowest possible dose for the shortest time, but we need to effectively explain this to the patient. To do so, we express sincere concern for their worry and inform them we will do everything to minimize side effects. We take a proactive approach, and often refer them to ophthalmology for cataract and glaucoma screening, inquire about calcium intake, and add supplements if needed. When appropriate, we also check vitamin D levels and order a bone mineral density DXA scan to check baseline bone density.

Another scary term is connective tissue disease (CTD). In CTD, the connective tissues and elastin are inflamed. Connective tissues are comprised of protein-rich collagen found in tendons, ligaments, skin, cornea, cartilage, bone, and blood vessels; elastin is found in ligaments and skin. As CTD is an autoimmune disease, discussion of self- vs nonself immunity, losing tolerance to self-immunity, and the innate and acquired immune systems, is warranted with patients. Examples of CTD include rheumatoid arthritis, scleroderma, polymyositis, systemic lupus erythematosus, Wegener's granulomatosis, Churg Strauss syndrome, and mixed CTD. All of these have different phenotypical expressions with different target organs. The exact cause of connective tissue disease is not known but it is speculated to be a combination of genetic and environmental factors, leading to uncontrolled inflammation in different patterns.

These simple words in rheumatology can elicit feelings of doubt, hopelessness, helplessness, fear, and sadness in our patients. Our role is to honestly educate and inform our patients of what lies ahead, take the time to explain the scary words and next steps, and be helpful and caring by remembering our patients are more than just their diagnoses.


Filed under: Rheumatology

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