RheumThoughts: Changing the Conversation with Patients: Lupus Save

Hi, I'm Dr Megan Clowse from Duke University and I want to talk today about how we have really changed how we talk to patients with lupus. 

So let's go back a few years to when I was at a regular old lupus clinic and a patient would show up who really gave me a pretty good history for a remote history of Lupus. You know, she'd had rashes, she'd had arthritis, she used to have pretty significant autoantibodies. But all of that is now pretty much gone and has been gone for a long time - but she still feels terrible. She has ongoing fatigue, a lot of achiness, she's not sleeping great; she just feels terrible. 

She's just been passed often from doctor to doctor and she is here to me: doctor you’re my last hope: what are we gonna do? 

And this is what I used to do: I used to say, well,l yeah, it sounds like maybe you used to have Lupus but I really don't see it now and you know this is fibromyalgia and you just need to go back to your primary care doctor and and they can manage it for you.

And she would be so disappointed, often kind of angry, sometimes kind of lash out verbally at me and I felt terrible. I felt like a terrible doctor. I felt like I just wasn't helping people. That's what I was there for, was to help people and I was just saying over and over again to new

patients, to old patients, your  lupus is fine, this is fibromyalgia, go someplace else for care.

So this was leading to a lot of burnout to be quite honest. I was exhausted from all of this and so we decided to stick a step back and really kind of rethink what we were doing with lupus.

What we came to after doing some patient reported measures for a little while was maybe there's two halves to lupus: maybe there's the inflammatory, kind of traditional what we all were trained as lupus: arthritis, big rashes, nephritis, the stuff you see in the hospital all the time. But maybe there really is this other half of lupus in which patients just feel bad all the time, and maybe it actually gets better and worse.

Patients have for years been telling you, well last week I felt terrible, I could barely get out of bed, but this week I feel a little better. Right? You've been hearing that forever. So as we measure things over time we really did see that patients seem to fall into a couple different groups. Some actually felt good most of the time and their disease was under good control. Others had a lot of active inflammation in their kidneys, particularly, though sort of paradoxically actually felt pretty good and were always confused as to why we were telling them to take all this medicine when they actually felt pretty much fine.

But then there were these other patients who, really, I couldn't find sort of active inflammation but they felt terrible. And then it turns out there was actually this other group of patients that we could find some significant inflammation in their joints or their skin or their kidneys, but they also felt really bad at the same time. 

So we've been exploring this. We call this type 1 and type 2 lupus. Type 1 being the kind of traditional lupus, type 2 being the chronic - well not actually always chronic - but often chronic kind of achy, fatigue, brain fog stuff. We've been really exploring it and looking for patterns and ways to treat it and on ways to better understand it. 

But most importantly it's really changed how we talk to patients. So whereas I used to say this: is not your lupus go someplace else, yeah it really didn't match her lived experience, right? All of our patients tell you that this achy fatigue is their lupus. And in fact when you ask a patient with lupus about what a flare is it's really actually a flare of achy, fatigue, brain fog, have to stay in bed a couple days - almost in all patients.

So, we've now started to really frame it differently. 

We say: you know the good news is it looks like your type 1 lupus is under really good control; you're taking your meds, things seem really quiet for quite a long time. I expect that they'll probably stay like that, because in our experience, the patients who get there and have been there for a while often stay really quite good. However, it really looks like this type 2 lupus is really a problem for you. And as you have learned your lupus meds don't really make a big difference in it, so let's see if we can find some other strategies that might be helpful. 

Then we start talking about all the other health behaviors that people do to start feeling better. That might include improving sleep, it might mean moving more, it might mean cleaning up their diets so they're not eating so much processed foods. It might mean dealing with the emotional baggage that they are carrying from a life of trauma, or experience with another doctor, or just the things that happen in life. 

So, there's a lot that you can do to help people feel empowered to actually kind of take back their health, and we've really found that these discussions have transformed a lot of our patients' lives but, in the most immediate, they have made lupus clinic infinitely more pleasant for me.

We would love to hear your insights after giving it a try. Thanks so much.