Transcription:
A Multidisciplinary Approach to Myositis

Melanie Cole (Host): Welcome to Better Edge, a Northwestern Medicine podcast for physicians. I'm Melanie Cole, and I invite you to listen as we discuss a multidisciplinary approach to myositis. Joining me in this panel are Dr. Arjun Seth, he's an Assistant Professor of Neurology in the Division of Neuromuscular Disease at Northwestern Medicine; and Dr. Sarah Fantus, she's an Assistant Professor of Medicine in the Division of Rheumatology at Northwestern Medicine.

Doctors, thank you so much for joining us today. And Dr. Fantus, I'd like to start with you. Myositis is also known as inflammatory myopathies. It includes many different types and syndromes. Why are these diseases so misunderstood and even often misdiagnosed?

Dr Sarah Fantus: Well, that's a great question. I think within this disease, there's a spectrum of diseases with many more specific diagnoses, which makes diagnosis pretty challenging in many situations. So not only is the condition overall rare, but because of the more specific manifestations, it can lead to physicians who don't see it every day missing it.

Melanie Cole (Host): That's so interesting. So Dr. Seth then, tell us a little bit about how your team evaluates and diagnose these patients. Tell us a little bit about how that process works and how you're able to narrow down what is going on.

Dr Arjun Seth: Absolutely. So that's an excellent question as well. Most patients are referred to us predominantly for weakness, so whether it's lifting their arms above their head or getting up out of a chair or getting up off the toilet. And so the way we end up evaluating patients is essentially to ask them first and foremost what exactly their symptoms are and trying to, based on that, define the pattern of their weakness and then evaluate them.

So I, as a neurologist and a neuromuscular specialist, essentially figure out the pattern of their weakness and come up with a list of diagnoses that it could be. And then we kind of proceed with a workup. So we send off lab work. We do testing with an EMG or nerve conduction study, which is a shocking test, to try and see what the nerves and the muscles are doing. And then we also do some further imaging to basically define again the pattern of the weakness that they may have. And based on that, we kind of collectively discuss as a whole group with a team of rheumatologists, pulmonologists, dermatologists, and neurologists to essentially evaluate the type of weakness, the pattern of weakness and define the clinical syndrome and the type of myositis or muscle disease that they have.

Melanie Cole (Host): Such an important aspect that you mentioned all the other specialists and certainly the topic of this podcast. And we're going to get into that. But before we do, Dr. Fantus, tell us a little bit about management for these patients. Why don't these diseases always respond to current standard of care medications?

Dr Sarah Fantus: Well, treatment for these conditions does vary by the subtype quite a bit. Most often, we are using immune modulating medications. But because these conditions have many other manifestations outside of the muscle, we're often basing treatment on how these conditions affect other parts of your body.

So for example, antisynthetase syndrome, dermatomyositis. Some overlap syndromes tend to cause a lot of inflammation in the lungs. So we're needing to use medications that not only help with the inflammation in the muscle and weakness, but also inflammation in the lungs and shortness of breath. So that's why selection is challenging. And then in terms of why sometimes these conditions don't respond to therapy as well, well, sometimes there's an issue with diagnosis. Sometimes I think the most predominant issue is that we just don't have much research in this area because these conditions are so rare. And so we're often extrapolating based on other conditions, in how these treatments are used in those conditions.

Melanie Cole (Host): Dr. Seth, I'd really like you to tell us about the myositis clinic at Northwestern Medicine, why the need, what specialties are represented in this clinic. And can you really pay attention to talk about the value of a combined clinic for the management of these patients, how you collaborate with these other specialties? Tell us a little bit about that.

Dr Arjun Seth: Absolutely. So the reason that we decided to collectively create a myositis clinic at Northwestern is essentially to provide good, comprehensive clinical care to our patients. So these diseases are rare. So it is important for us as a whole team to provide a good, comprehensive evaluation for a patient and get as much input from other providers in order to better serve our patients. So that was the major impetus for creating this clinic.

The main specialties represented in this clinic include rheumatology, neurology, specifically neuromuscular medicine, pulmonology, and dermatology. And then we also work with our pathologists, so the folks who read muscle and nerve pathology to also better help guide us in managing the patients who have inflammation in their muscle or myositis.

Dr Sarah Fantus: And I'd like to add that while physical medicine and rehab is another important part of management of these patients, we work really closely with Shirley Ryan Ability Lab. It's affiliated with Northwestern. So while they're not a direct part of our clinic, they're an important way that we help these patients and manage them.

Melanie Cole (Host): Well, then along those lines, Dr. Fantus, as you are formulating consensus opinion through discussion and patients would be the largest beneficiaries of this model, how does it improve the quality of care and treatment selection? Tell us a little bit about the model and this multidisciplinary collaboration and how it works.

Dr Sarah Fantus: Sure. So the multidisciplinary aspect of this clinic is really important because some of the findings are so subtle. So for example, as a rheumatologist, I might be really good at detecting findings of inflammatory arthritis in a patient that might contribute to their diagnosis and management. But Dr. Seth would be better at detecting the pattern of weakness and our pulmonologists would be better at making sure that we're not missing any inflammatory disease in the lung. So that's why not only having patients see all these providers is important, but also creating an opportunity for us to discuss these cases is equally important because if we all add our expertise to these management decisions, we're often able to come up with the single best treatment plan.

So right now, patients are seeing these providers in separate clinics, not physically in the same clinic. And then, we are expediting, seeing these providers and getting workup needed. And then we're also meeting regularly to discuss patients so we can finalize a treatment plan.

Melanie Cole (Host): And Dr. Seth, tell us what you and your colleagues at Northwestern Medicine are doing to advance the understanding and treatment of myositis. Any research that you're doing that other providers may not know about? Tell us a little bit about how it might translate to patient care. What are you doing there?

Dr Arjun Seth: Absolutely. So, what we are trying to do first and foremost is better define the number of patients with myositis that we have at Northwestern Medicine. So we have a large catchment area within the Chicago land area and within Illinois. And so the first we just needed to find kind of what diseases that we're actually looking after, first and foremost. The thing that we've started doing is working with our colleagues in rheumatology and with pulmonology kind of, just one, defining the number of patients that we have. And then our goal is essentially to start clinical trials in patients to provide them with new cutting edge drugs available to help with what their disease process is.

So for instance, there's a lot of what we call immune-mediated necrotizing myopathies, which is inflammation of the muscle, all auto-immune process causing that muscle disease. And we'd love to be able to start doing some clinical trials to better define which drugs actually work well for these patients, and help put their disease in remission.

Melanie Cole (Host): What an interesting clinic and a great topic we're discussing today. I'd like to give you each a chance for a final thought. So, Dr. Seth, I'd like to start with you. What else would you like other providers to know? And when do you feel it's important that they refer to the specialists at Northwestern Medicine? Give us some final summary thoughts.

Dr Arjun Seth: I think the big thing is if providers don't know what's going on, it's always good to reach out to us for help. We're here to try and help serve patients. That's the reason we all went into medicine. And we want to be able to help everyone the best way we can.

So if providers have questions or concerns about patients having weakness, in particular arm or leg weakness or difficulty swallowing, speaking, breathing, difficulty with our vision or having unusual rashes, please refer them to us so that we can try and help your patients.

Dr Sarah Fantus: And I'd like to add that there's a lot of demand for specialty care right now in Northwestern medicine and elsewhere. So I would encourage other providers to just message or call me or Dr. Seth directly, if there's any difficulty getting patients in to see specialists because, certainly with these conditions, time is of the essence with starting therapy.

Melanie Cole (Host): And now, Dr. Fantus, your final thoughts, your vision for this program and how you feel this care model, this multidisciplinary care model can improve the way patients receive their care for myositis.

Dr Sarah Fantus: My vision for the program is really to improve the patient experience and streamline it. So I think what we're working on most aggressively and diligently is to help a patient with this condition, identify a point person and get really appropriate and expedient care. And so, my vision going forward is that that process will just be more and more streamlined for the patient. And they will have time to deal with their condition and all of the issues that come along with that and the management, and not have to spend so much time on coordinating doctor's visits and getting the necessary studies done.

Melanie Cole (Host): What an excellent program and very informative. Thank you so much for joining us doctors. To refer your patient or for more information, please visit our website at breakthroughsforphysicians.nm.org/room/rheum, That's R H E U M to get connected with one of our providers. That concludes this episode of Better Edge, a Northwestern Medicine podcast for physicians. Please always remember to subscribe, rate and review this podcast and all the other Northwestern Medicine podcasts. I'm Melanie Cole.