There have been great advances in the treatment of systemic lupus erythematosus (SLE) over the last four decades, but it’s not always an easy diagnosis. In some cases, years can pass before a patient gets an accurate diagnosis.
In nearly every case, a primary care provider will be the physician who first recognizes the signs and symptoms of lupus in a patient. In a presentation given at the Rheumatology Nurses Society annual meeting held earlier this month, Monica Richey, MSN, a rheumatology nurse practitioner with Northwell Health in New York, discussed the importance of augmenting the focus on lupus, particularly in primary care, as well as treatment challenges.
In this Q&A, Ms. Richey discusses some of the important points of her talk.
In today’s healthcare environment, why it is important to maintain a continued focus on lupus?
“There are more patients being diagnosed with autoimmune diseases, and lupus is still an under-diagnosed disease. It can take 18 months or more for a patient with lupus to be properly diagnosed. And, because lupus can have many different presentations, diagnosis can be difficulty and lengthy.
Primary care providers are usually the first providers to see these patients, and they need more education on ordering labs and when to refer a patient to a rheumatologist. Currently, we have more diagnostic tools and treatment than we had 15 years ago, meaning the lupus patient has a much better prognosis than he or she did back in the 1980s or 1990s.
What is important for primary care providers and nurses to know about lupus?
“All primary care providers should suspect lupus when two or three organ systems are involved. If a patient comes in with fever, anemia, and joint pain, do the blood work or refer him or her to a rheumatologist. We have a new lab called Avise to analyze for the entire lupus panel plus connective tissue diseases. Often, primary care providers don’t know exactly what tests to order, so they don’t order everything they should. That leaves the rheumatologist without all the information to reach a well-informed conclusion about a patient. Some patients can end up thinking they have lupus when they don’t.
Providers should remember lupus symptoms vary widely. Fever and hair loss, malar rash are the most expected, but now always seen. There are a plethora of symptoms. Fever, joint pain, severe fatigue, and sometimes the kidneys are involved with lupus nephritis or there’s some other organ-threatening disease. Providers can sometimes mistake the problems for an infection, and that can delay treatment. So, it’s important to consider screening anyone who presents with fever, joint pain, rash for lupus.
As for treatments, after a 60-year gap between medications, we have quite a bit in our arsenal now, as well as a very strong pipeline with the pharmaceutical companies. They’ve picked up on the lack of medications we’ve had, so more money is being invested in lupus treatment. Almost every company is trying to find a new medication for lupus. But, we do face a problem that a lot of our drugs are still being used off-label. That can create trouble with the insurance companies that won’t want to pay for it. So, providers will often need to think outside the box on how to use therapeutics.”
Next page: Challenges associated with a lupus diagnosis