Michelle Petri, MD, on Improving Outcomes in SLE by Individualizing Care
Dr Petri reviews her presentation at the Interdisciplinary Autoimmune Summit on the importance of providing individualized care for patients with systemic lupus erythematosus.
Michelle Petri, MD, is director of The Lupus Center at Johns Hopkins University in Baltimore, Maryland.
TRANSCRIPT:
Hello. My name is Michelle Petri. I'm the director of the lupus center at Johns Hopkins. And as part of the conference I discussed how we need to individualize care in lupus if we're going to improve outcomes.
One of the key points is that we are not improving outcomes. Some very disturbing data include the fact that lupus remains the fifth or sixth leading cause of death in young women of color. And looking at the years before the COVID pandemic, deaths from lupus nephritis were actually going up. I mean, not even a plateau.
So, what are some of the things we can do differently? First, our armamentarium is improving. There are two new approved therapies for lupus nephritis, voclosporin which is a calcineurin inhibitor and belimumab which is a BAFF inhibitor. They both have particular strengths. And so it may even be someday we're going to use both of them. But I think the important thing is that we're going to have to look how each patient is doing and individualizing their therapy much sooner.
To give you an example, we used to think lupus nephritis just meant we started mycophenolate and we just kept the patient on it, but now we have to have landmark goals. So 3 months into therapy, we want the patient to be 25% better. If they're not, then we need to make a choice of adding the calcineurin inhibitor or adding the BAFF inhibitor. And again, because they have different strengths, we'll pick the one that best matches the patient's needs.
Similarly, by 6 months into treatment, the patients should be 50% better. If they're not, we need to make those same kinds of decisions. And if the patient's not improving at all, then it may be time to rebiopsy because lupus nephritis can change over time in terms of the ISN class and we may need to change our approach accordingly.
Now another example of having to individualize therapy is that our lupus patients complain of 2 different types of symptoms with a different pathophysiology. The first we call type 1 now based on a wonderful paper from the Duke group headed by David Pisetsky. One of the coauthors is Megan Clowse, a former fellow at Hopkins.
Type 1 means the symptoms that are from inflammation, so from active lupus. And those are things like rash, swollen joints, kidney disease, serositis. Those were going to treat with anti-inflammatory therapies, immunosuppressive therapies, but limiting prednisone.
The type 2 are symptoms that come from brain and nerve pathways, not from inflammation. There's a whole neurobiology, not just to lupus but to several autoimmune diseases, especially things like multiple sclerosis, for example. The type 2 symptoms are things such as chronic fatigue, muscle pain, brain fog, anxiety, depression, headaches. And in fact, fatigue turns out to be the major unmet need from the patient's point of view.
Now, lupus medications aren't going to help type 2 because remember type 2 are from brain and nerve pathways. Things that can help, for example, are tai chi, which is very helpful for fibromyalgia pain, aerobic exercise, which has now been shown in multiple clinical trials to help the majority of women with lupus with chronic fatigue. But I even write this down for my patients because when you're a person living with lupus you want to blame everything on active lupus, meaning inflammation, but the patient must be our equal partner in addressing the type 2 symptoms.
Now, another example where we must individualize to our patients is the issue of adherence. And I didn't realize until about 7 or 8 years ago how crucial this is when I introduced hydroxychloroquine whole blood levels into my practice and found that 50% of my patients were subtherapeutic.
And through education,by the third visit I was able to get good adherence—up to 80%, not perfect, right? This is a work in progress, but it taught me that we need to have targets and that our target for hydroxychloroquine blood levels should be 1000 to 1500, including if we want to get the benefit of its prevention of thrombosis.
So I can't give you enough examples. It just goes on and on. Every patient is going to be different, is going to have different needs and challenges. And I so often feel that the role of a rheumatologist is to be the primary care doctor for our lupus patients. Thank you for your attention.