Managing Lupus: Tailored Strategies for Flares and Fatigue Relief
Dr. Colbert:
Welcome to Living Rheum on ReachMD. I’m Dr. Gates Colbert, and joining me to discuss how we can manage flares and fatigue in patients with lupus is Dr. Robin Dore, who is a board-certified rheumatologist and Visiting Professor at the University of California at Irvine. Dr. Dore, thanks for being here today.
Dr. Dore:
Thank you very much for having me.
Dr. Colbert:
To start off our conversation, Dr. Dore, can you tell us what might trigger a lupus flare?
Dr. Dore:
There are many different things that can cause a lupus flare. Certainly, an infection can cause a lupus flare. Stress can cause a lupus flare, and that can be either a physical stress, such as an injury or an accident, or it can be an emotional stress as well. And then ultraviolet light. There’s a book called The Sun Is My Enemy. It talks about lupus patients. And so it can be the UV light, but we certainly see that some patients in excessive, extreme temperatures can also have a flare related to that as well.
Dr. Colbert:
And to help us anticipate those flares, what symptoms or warning signs should we look out for?
Dr. Dore:
Every single lupus patient presents differently, and so their signals for a flare can vary from patient to patient, but what I’m looking at is if they’re complaining of more pain, if they think their medicines have stopped working, or if they’re not getting enough sleep. And maybe they’re not getting enough sleep because they have pain, maybe they’re under stress, maybe they can’t get comfortable at night, or their kids come in and wake them up because they’re not able to sleep well. So we’re looking at changes in their complaints for the disease or just changes in their lifestyle or behavioral patterns.
Dr. Colbert:
Now when a lupus patient experiences fatigue, how do you determine whether it’s due to a lupus flare or other factors, like depression or medication side effects?
Dr. Dore:
What we do in clinical trials is we perform a FACIT-F, which is a validated questionnaire for fatigue that is able to isolate the fatigue related to their disease, but in clinical practice, we certainly don’t have the time to use the FACIT, and so what I use in my office is a RAPID3; and this is a questionnaire that certainly looks at pain and overall quality of life, but then it also asks how they’re sleeping, if there’s something else bothering them, did something change in their life, so then I can determine if the new complaint seems to be exacerbated by some stressful situation that’s occurring to them. And that could be at home. It could be their place of employment. It might be something having to do with the kids’ school. But if I have that questionnaire, at least it tells me which way to go in my evaluation. The fatigue can also be related to inflammation, and so when the patient comes in and complains of fatigue, I’ll order a sedimentation rate and C-reactive protein, two blood tests that measure inflammation, but then I’ll also order the routine tests, such as a complete blood count, a comprehensive metabolic panel, and a urinalysis to make certain there’s no evidence of a disease flare based on that routine lab. But then if they’re coming in with a specific problem that seems to indicate a flare, then I’ll order some of the lupus serologies like an ANA, a C3, C4 complement, a double-stranded DNA, to really try to separate out is this stress, is this their disease, and then I can make my recommendations based on the results of my physical exam, the labs, and the patient’s history.
Dr. Colbert:
For those just tuning in, you’re listening to Living Rheum on ReachMD. I’m Dr. Gates Colbert, and I’m speaking with Dr. Robin Dore about guiding patients through lupus flares and fatigue.
So, Dr. Dore, now that we’ve discussed symptoms of lupus flares, can you explain your approach to managing these patients?
Dr. Dore:
Well, once I determine what I feel and the patient agrees is causing the flare, if it is their disease, then I’ll talk to them about either changing their dose of medication, adding a medication, or stopping one and switching to another. We have data with both biologic therapies available to treat lupus that using that FACIT-F questionnaire that I mentioned that both biologic therapies do reduce fatigue in lupus patients. So if I have a patient who’s on what we call conventional DMARD therapy, disease-modifying antirheumatic drugs—let’s say if they’re on azathioprine or mycophenolate or hydroxychloroquine—and the test suggests that it’s their active disease, then I will oftentimes talk to them—if they’re on the maximal dose of those medicines or unable to tolerate a higher dose, then I’ll talk to them about adding biologic therapy.
I had a lupus patient last week that called me and said, “My endocrinologist thinks my horrible fatigue is related to my lupus,” and I know she had been undergoing a lot of stress, and I told her that all of her lupus labs were normal and that I did not think that it was her lupus. I felt that it was the stress that she was under and asked her if she had a mental health professional, and she said yes, and so I asked that she contact that person and offered to speak to that person in confidentiality if that was necessary. So then I had to kindly call the endocrinologist and say, “Her endocrinology problem is under control. Her lupus is under control. She has a history of severe depression, has been seeing a psychiatrist for a long time, and so this is not something that you or I need to change her medicine, but we really need to have her talk to the psychiatrist and change her medications there.”
So this is an assessment that takes a while to figure out. Unfortunately, a lot of the lupus patients, their family, and their friends will not understand the fatigue because they can’t see it. They say, “Well, they look fine, but they feel terrible.” So as I told a patient yesterday, “It’s not all in your head. It’s real.” It’s difficult to measure at times, and so we need to take the time to figure out what’s causing it and then treat that appropriate cause and try to help the patient without subjecting him or her to medication side effects if it’s related to stress rather than the medicine not working.
Dr. Colbert:
And as a quick follow-up, what role do lifestyle interventions, like diet and exercise, play in reducing the frequency of lupus flares and managing chronic fatigue?
Dr. Dore:
In all autoimmune diseases, lifestyle plays a huge role. There are many studies that show that these patients need at least seven hours of sleep at night; that if they are having a day where they’re feeling fatigued, that they should not try to push through that because that’s only going to make them feel worse; and that they should do some type of exercise every day. I have a handout that I give the patients about an anti-inflammatory diet. I read three different books and came up with these recommendations, but typically, it’s to avoid fatty red meats that we know cause a lot of inflammation trying to have oily fish a couple times a week, really the Mediterranean Diet that we know is so good for reduction in Alzheimer’s disease and coronary artery disease. It’s also been shown to be helpful in autoimmune diseases as well. And then stress reduction; I very frequently recommend my patients to discuss stress reduction with a mental health professional.
Dr. Colbert:
And as we approach the end of our discussion, I have one last question for you, Dr. Dore. Given that lupus flares and fatigue often involve multiple organ systems, how do you coordinate care with other specialists, such as nephrologists like myself or a neurologist to ensure comprehensive patient management?
Dr. Dore:
I have my own little office, and so I am not part of a big healthcare system, so if the patient is part of a healthcare system, then the coordination of care is much easier because you open up your computer and you see the other notes from the specialist as well as the laboratory studies.
Coordination of care is extremely important because these patients have so many organ systems that can be involved, and I go out of my way to make certain that I communicate usually electronically, but I have the cell numbers of some of the specialists that I coordinate care with all the time. But we can’t take care of these patients in a silo. If the patient has abnormalities of their blood count, my question is, “Is it from my medicine, or is it from their disease?” So very frequently, I’ll have a hematologist involved. Many times, these patients are short of breath. The question is, “Is it coming from the lupus affecting their heart? Is it a complication of their steroids that are causing coronary heart disease? Could this be their lungs and they have interstitial lung disease related to the lupus?” I’m contacting the pulmonologist and saying, “Could you order pulmonary function tests for me? Could you order a high-resolution CT scan of the lungs?” And that’s a whole job in and of itself trying to coordinate that care, but it’s so important because, again, we can’t practice in the silo. And because lupus can potentially affect many different organ systems, that’s extremely important.
What I see with nephrologists like you is that frequently, that heaven forbid if the disease does affect the kidney, then at least in my neck of the woods, frequently the nephrologist takes over and finds that with their treatment, the other disease manifestations get better. If it doesn’t, then we’re coordinating care back and forth between the rheumatologist, nephrologist, and all of these other specialists. But that communication is so important because often patients are so overwhelmed by what we tell them and the diagnosis, and if they don’t have somebody who comes with them to the office visit appointments, they’re really not clear what the specialist told them, and so having that ability to reach out and coordinate care is extremely important so we’re taking the best care of the patient possible.
Dr. Colbert:
Yes, and that’s a great comment for us to think on as we come to the end of today’s program. I want to thank my guest, Dr. Robin Dore, for joining me to talk about how we can care for patients with lupus flares and fatigue. Dr. Dore, it was great having you on the program.
Dr. Dore:
Thank you very much for having me, and hopefully the listeners will find this to be helpful.
Dr. Colbert:
For ReachMD, I’m Dr. Gates Colbert. To access this and other episodes in our series, visit Living Rheum on ReachMD.com, where you can Be Part of the Knowledge. Thanks for listening.
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