Practice Pearls for Lupus Management

Anne E. Winkler, MD, PhD, MACP: You’ve already given some excellent pearls of advice, on how we rheumatologists need to step back and look at the patient when they first present to us in detail to make sure that regardless of what somebody has said they have before, what do they have? As well as each time we see the patient, again to think about what’s going on, as well as it’s important to monitor those patients, particularly as you said, those who are at high risk for the first five years or so of diseases for things like lupus nephritis. Anything else that you think is important to throw out there for our colleagues?

Kristi V. Mizelle, MD, MPH, FACR: One thing that can get lost in all the checking of the antibodies and the clinical exams is how is the patient is doing. I’m referring to their mood. I’m referring to their stress level. Because those can play a role with causing flaring and/or increased disease activities with our patients, understanding and encouraging our patients to have good self-care habits, to get good rest, to not overextend themselves as far as in super stressful jobs and things of that nature, especially when the have severe lupus. Those things are important. I have a young lady who is in her 20s, who has had several lapses of class 4 lupus nephritis, who has in despite of that managed to finish her RN program and become a nurse. And she went into training to become an ICU nurse and developed a horrible flare. And I said to her, “I don’t think it’s wise for you to have a high stress job because it's too much for your lupus at this time.” And I encouraged her to think about other ways she can use her RN without being in those high stress situations because it worked against her. That’s not always the case with every patient, but with someone who has disease that’s not quite 100% controlled, you’re struggling with it, and then they have stressful lives on top of that, it’s a bad combination. We also have to counsel our patients on things that will help them with managing life stressors, making sure their sleep is good, and encourage them to make good life choices, so they don’t set themselves up to be super stressed, which can negatively impact their That’s something we forget a lot. Also, the coexistence of depression and anxiety and its impact on quality of life for our patients. Say the lupus is under great control but they’re depressed. They’ve got to take all these medicines. They’ve got to come and get an IV medication every month. Etc. They don’t feel like they have their youth. Often these patients are young women. We must pay attention to that because those things also impact their lupus disease, there is a mind body connection there. And we must be aware of that. Sometimes that gets lost as we’re trying to make sure we’re addressing all the manifestations clinically and the lab values, but we also must check in with our patients to make sure that they’re doing OK as far as their mental and emotional health as well. Because that plays such a role because there’s so many pressures and stressors, particularly on young women in this age range, that it’s very easy for that to play a role with their lupus as well.

Anne E. Winkler, MD, PhD, MACP: One of the things I do, even though it’s not valid against lupus because we don’t have another great measure, is I do a RAPID3. My patients fill it out before they walk into the room, you know how our patients don’t always want to tell us how they’re really feeling? This way, they’re checking in and there’s those three little questions at the bottom of the modified pack that talk about depression, anxiety, as well as the how well you feel like you’re overall doing. And I can look at that, and I can bring up the topic in a way to say “You filled this out. Looks like maybe you’re having more problems struggling. Let’s talk about this more.” And it helps bring that topic out in the exam room because again, a lot of times they don’t want to tell us.

Kristi V. Mizelle, MD, MPH, FACR: Yes. That’s true. And the other part to that is there is so much in common in fibromyalgia that exists in this patient population, and that in and of itself can be difficult. But then when you add lupus on top of it, that’s stressful and very difficult for patients to have pain all the time. Even if the lupus is well controlled the fibromyalgia could be very active, and making sure that patients one, get an appropriate diagnosis and that we don’t make- we shouldn’t say everything is lupus because it’s not always all lupus. There can be concomitant other medical conditions that need to be addressed that need different treatment plans than lupus. It doesn’t matter how many immunosuppressants you put on the patient, if they’ve got fibromyalgia, that’s not going to help it. You’ve got to think about is there else going on, so this is something kind of like a pet peeve sometime of mine is that sometimes when patients get that Lupus diagnosis, their other providers stop thinking. They’re like “We can’t do anything. Everything is the lupus.” But we’ve got to think every time the patient has a new issue, is this lupus? Yes or no. And if it’s not, what else is it, and does it need to be treated? And with fibromyalgia, that is another whole life change as far as what do you have to manage that with the non-pharmacologic interventions, which are very important, but then often patients may need pharmacologic interventions as well. Making sure that if that’s existing that we’re not ignoring those manifestations and prioritizing the lupus manifestations, and then the patient’s quality of life suffers. Both have to be addressed, and we have to at least be aware of that. Just because they’ve got a lupus diagnosis doesn’t mean something else can’t be going on at the same time. And we have to make sure that we thoroughly investigate every new complaint, symptom, issue so that we’re not missing things that we should be addressing.

Anne E. Winkler, MD, PhD, MACP:Thank you so much. I want to thank you all for listening to this Rheumatology Network ®presentation. I know we both hope that you found this very rich and informative. I know I certainly did. Thanks again for watching.

Transcript Edited for Clarity