W. Hayes Wilson, MD

It’s important for us to understand that we treat the whole patient, and we treat the whole patient in the circumstances that surround us. And the circumstance that surrounds us now is COVID-19. Sometimes, it brings families closer together because they’re sheltering in place, and that helps with their support group. But sometimes, it’s the opposite. Sometimes, an older parent can’t be around their kids because their kids are sick, or their kids have little kids who are sick. And they don’t have the support. It’s good to keep all those factors in mind when we’re prescribing things. Sometimes an infusion is better, and sometimes a self-injection, for instance, like a repository corticotropin injection, might be easier than coming in to get an infusion. And in some ways, it may be more effective. We have to take into account all the factors with our patients, their support systems, their ability to come in and get treatment, their ability to get the monitoring that they need. All those are important things. Any comments you want to make on that?

 I totally agree. I tell my patients if you want black and white, then this is not the specialty for you. We are many shades of gray, and our decisions are individualized and based on our best opinion.

: I like to say, that absence of evidence is not evidence of absence. Just because you’re paranoid, doesn’t mean that people are out to get you. My professor used to say, “I don’t know what he’s got, but he’s got something.” And sometimes what we have to do is use the information available and go with it. I had a patient who had a bad inflammatory myopathy, early in the pandemic. I wanted to get a muscle biopsy on her, and there were no elective procedures, so I couldn’t do it. I had to go ahead and treat her. And now, doing the muscle biopsy isn’t going to be that helpful because we’re pretty far along. I’m having some trouble tapering her off of her oral prednisone. And I’ve found that repository corticotropin is a good way to help taper because of its effect on melanocortin type 2 receptors in the adrenal cortex. It’s sort of helping the adrenal cortex to work, and to wake up and do its job, so you can give fewer oral steroids.

 It has both, like you mentioned, direct and indirect properties. The percentage of engagement with the adrenal cortex is minimal. That’s the other special sauce, as you might want to call it.

: Yes. Well, we’ve covered a lot of ground today about treatment options for systemic lupus erythematosus and idiopathic inflammatory myopathies. What advice would you have for community physicians treating rare systemic autoimmune rheumatic diseases?

 Don’t be afraid to say, “I don’t know.” These are rare conditions, and even we’re not seeing them every day. But a good physical history, there are some serologies that are available, that anyone can order, and try to connect the dots with other subspecialties. If it doesn’t make sense, and if they’re having multiple organs involved, and you can’t quite tie a diagnosis, rheumatologists might be the missing link.

: I like that, the rheumatologist might be the missing link. That sounds great. I say exactly the same thing, that we’re here to help. Please use us as a resource. And we want to work with you and help you to work with things that are rare. I completely agree that common things are common, and not much of what we do is. And certainly, since we don’t have necessarily a light switch that says on and off for our diseases, it takes a lot of clinical judgment, and it takes a lot of working with the patient, following the patient. And sometimes it evolves over time. We might think it’s one thing, and it turns out that it’s something else. I completely agree with everything you have to say. And I think that’s great advice for community physicians. Do you have any final comments before I make closing remarks?

 I look forward to the good old days, where we can all get together in person, and not have to socially distance ourselves and not worry about unvaccinated individuals. And I wish everyone health and the very best.

Well, this has been delightful, and I’ve really enjoyed talking with you. I hope we get to do this again sometime. I want to thank all those out there who are watching this 

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Closing out their discussion, experts highlight practical advice for caring for patients with SARDs in the current treatment landscape. 

Practical Advice for Managing SARDs in the Current Treatment Landscape

: Since we’re in the middle of COVID-19, and patients come in and they say, “What do you think, should I get the vaccine, or not get the vaccine?” How do you couch your answers to them? I’ll just toss this out here and see if you’ve run into this. I had a patient yesterday who said that she got COVID-19. She got ivermectin off the internet. And she thinks that helped her a lot. How do you answer?

 I was hoping when this pandemic started that we had the solution all these years in hydroxychloroquine, and we see in the trials, it really didn’t make a difference. But I advise all my patients that the benefits outweigh the risk. Although this is a new virus, and we’re still understanding it, getting vaccinated is in their best interest. And for many of our patients who are on DMARDs [disease-modifying antirheumatic drugs] and biologics, they qualify for a booster, if available. It’s a conversation we’re having every day. I think you’ll agree, COVID-19isn’t going anywhere. And this may eventually be COVID-19, 20, 21, and so forth. We’re going to have our annual booster, an annual vaccine, similar to what we’ve done with influenza.

: I’m hoping that this may run the course in 3 or 4 years. But I don’t think it’s going to be over by Christmas. And the fact of the matter is, I point out to my patients that there’s a hospital south of us called [Piedmont] Newnan Hospital, and it’s at 128% of capacity. They’re stuffing people in places that aren’t supposed to have people, and they’ve got the National Guard there. And I said that more than 90% of the patients are unvaccinated people. That the problem that we have now is not from the vaccine, the problem is we have is from the unvaccinated. And the people on ventilators and the people who are seriously ill are certainly the people who are unvaccinated. As a matter of fact, we have a report. There are some people who get COVID-19 even though they have been vaccinated. However, one of the comments I saw was, well, if you get vaccinated, you can still get COVID-19. All it does is, you don’t die. And the comment after that was, well not dying sounds pretty good.

Most of my patients who got COVID-19 after they got vaccinated had it for 3 to 5 days, and it was a very limited course. I have some patients who, they’ll say, “I’m waiting to see.” And I point out to them, that’s like you’re not sure about seatbelts. You’re waiting to see about seatbelts. That’s great, as long as you don’t have a wreck. But if you have a wreck, it’s not going to work out very well for you. And the same thing with COVID-19. If you’re just waiting to see about the vaccine and you get COVID-19, you may wind up dying. I guess they’ve estimated now that 675,000 people have died from COVID-19, and that’s as many as died from the Spanish flu. Of course, we have 6 times as many people, but we also have a vaccine. It just seems sort of obscene that that would happen. I read the other day that for the first time in history, more people have died in Alabama than were born in Alabama. That’s a sobering characteristic too.

When we think about rare autoimmune diseases, we have to consider that that puts you at risk for other things. And who would have thought when we were in fellowship, that we’d be treating people during the middle of a pandemic? I never would’ve thought that, but it’s a “yes, and.” So, what we have to do is say, yes, it’s a pandemic and what are we going to do? We’re going to do the best we can, which is to vaccinate the people. And that’s a lot of the same thing that we do with our patients with lupus. I have patients come in all the time, and they say, “Well, I really don’t want to take any medicine.” And I say, “Well, you’ve got a serious disease that can affect different organs of your body. You need to strongly consider taking medicine.” And it can be hard when somebody says, “Well, I’m going to eat whatever vegetables and it’s going to make me better.” And I’ll say, “Not with an autoimmune disease, it isn’t.”

Sometimes like you said, and I like the way you brought it up, is we get the family to help us out. We get them to be advocates with us and say, “There are other people who care about you and who think that you should address your problems.” I completely agree with everything that you said because it is a team approach. Patients with systemic autoimmune disease tend to be women of childbearing years, which means they tend to have families. And the whole family gets involved. Kids get involved, the husband gets involved, and sometimes grandparents get involved, because they have to help with taking care of the kids. The opposite is true as well, that sometimes some of our patients who are a little bit older wind up having to take care of grandkids because the parents are going off to work. And because they have an autoimmune disease, and kids are like little Petri dishes and carry infectious diseases, we have to be cautious. That’s another reason why you may want to have them vaccinated as well. Any comments you have on that?

 Well to add to that, that’s why, for example, we offer the flu vaccine at the office for all our patients because we want to minimize these risk factors. I use the same example as you mentioned with the seatbelt. A seatbelt may not prevent you from dying, but it’s going to protect you from having a serious injury, and you may still have a car accident, but you might survive it because of the seatbelt. There’s going to be a lot of education going on about maintaining these vaccinations and preventing deaths and hospitalizations because that’s what the vaccine is intended to do.

I agree. I’ve seen cartoons from the Spanish flu at the turn of the last century, when people didn’t want to take vaccines. And I remember when I was a kid, you’re too young to remember this, but they made cars that wouldn’t start if you didn’t put your seatbelt on. And a guy 2 doors down from us said, “Nobody’s going to make me put a seatbelt on.” And so he would buckle the seatbelt behind him because, by God, nobody was going to tell him he was going to wear a seatbelt. Also, my first job at Grady [Memorial] Hospital was washing dishes. And I washed dishes with a guy who said, “I’m not going to wear a seatbelt because if I get in a wreck, I’m going to jump free.” I just point those 2 things out to my patients. I say, “You wouldn’t do either one of those, would you?” My patients say, “No, that sounds absurd.” And I say, “Yes, maybe you ought to go ahead and get a vaccine.”

I want to thank all those out there who are watching this 

Shared insight on the importance of educating patients with SARDs on the value of COVID-19 vaccination. 

Managing SARDs: The Importance of COVID-19 Vaccination

: You brought up a good point too, about advocacy. I’m sure you’ve done a lot with the Arthritis Foundation and Lupus Foundation of America. A large part of what we do is awareness. And a large part of what we do is education, which is helping the patient understand. Because if I can’t cure their disease, I always tell people that there are only 2 goals for the Arthritis Foundation. One is to find a cure for arthritis. And of course, there are over a hundred different varieties of arthritis-related illnesses. Then the other one, we haven’t gotten there yet, is to support the people who are providing care, and to support the people who are receiving care. That’s part of what we do. But it’s important to hook people up with good resources. We refer people frequently to the American College of Rheumatology [ACR], to the Arthritis Foundation, to the Lupus Foundation of America. And we have support groups. For young people with arthritis, I’m sure you have this as well, we have camp E-Ko-Wah, which is for kids to go to camp just a little outside of Atlanta, to be around other kids and to understand that they’re not alone. And that’s true of adults too.

One of the things that we have to be careful about and cognizant of, is it’s life-changing to be told you’ve got, and it sounds a little harsh, but you’ve got an incurable disease because we don’t have a cure for arthritis. We don’t have a cure for lupus. We don’t have a cure for inflammatory myopathies. But we’re going to be there with you along the way. And you’re going to get more questions, and we’re going to answer more questions. If you have a problem, you’re going to call us and we’re going to help you handle the problem. They’re worried about their disease. They’re worried about, “What’s going to become of me?” They’re worried about treatment. And everybody wants to know, “Am I going to get better? Am I going to get well?” And you always say, well, absolutely. I mean, that’s our goal, is to make you better. And people are always saying, “Am I going to be crippled?” And the answer is, not on my watch. But we do the best we can. Along with that, what are some of the reassuring things that you like to tell your patients, right after you give them the bad news that they’ve got a chronic incurable illness?

 You nailed it, that nobody wants to be told they have a chronic condition. But that’s also what drew me into rheumatology. Because we follow these patients, we marry these patients. We see them progress. And although we don’t have cures, the treatment options we have now are far better than 20, 30 years ago. I like to also get their caregivers involved. If I feel like they’re not quite comprehending the severity of the disease, I want their family members to come, their spouse to understand what we’re doing, why we are here. I also sign them up to support groups to meet other patients with similar conditions, so they can share. The Lupus Foundation has a great resource here. They organize annual walks and fundraisers, and so forth. It’s great networking for other patients, especially when the disease is so heterogeneous. And we also refer them to the ACR because we know our patients are looking up things on Google, so at least have them look it up from a reputable source that is trusted. And it’s something that we also believe in. I suggest the American College of Rheumatology website for any disease state information.

: I completely agree. I want to thank all those out there who are watching this 

W. Hayes Wilson, MD, and Kostas Botsoglou, MD, reflect on the importance of patient education and advocacy in managing SARDs. 

Improving Rheumatology: Patient Education and Advocacy

We live in a COVID-19 world now. I’m sure you see people from a long way away, and people who don’t want to come into the office. Do you use much telemedicine?

 Yes. Telemedicine is here to stay. We went from zero to 100% telemedicine, much faster than we expected. But it’s a great option for patients who are stable, and perhaps there’s a travel burden. Or in our region, snow, it can snow 12 months of the year. It might be difficult to get to an appointment. But rather than lose that spot, because as you know, there’s a demand for rheumatologists all over the country. And at least we can preserve those spots for our stable patients, or at least see someone who otherwise was unable to travel to see us. It’s part of our daily practice. At this time, it’s primarily face-to-face because things are better in our region. But it’s always going to be an option for our patients.

Yes, I completely agree. To be honest with you, we see people from a long way away. It makes it sort of challenging. I remember when I was in training, I used to have a dermatology professor, Marilynne McKay, [MD]. And she just thought it was funny as all get out, being on call for dermatology. Somebody would call her on the phone and say, “I have a rash,” and she’d say, “Hold it up to the phone.” That was 35, 40 years ago. Now, they can actually do that. They can FaceTime you and do that as well. Telemedicine is a great tool to be able to use for people. But there are some challenges too. What are some of the ways that you do muscle testing if you’ve got an inflammatory myopathy? For dermatomyositis or for lupus, you can see if they have a malar rash or if they have a shawl sign, but how do you do muscle testing?

 Exactly. There are limitations, and we won’t see a new patient by telehealth. I want to examine them. There’s an element of a physical examination that’s important for us. But for our stable patients for whom we’ve made the diagnosis, who are on treatments, those would be better candidates.

: Sometimes what we’ll do is, we’ll say, “This is going to be a really expensive test. Now, what we want you to do is, we want you to cross your arms and stand up,” and see if they can stand from a chair, that sort of thing. But as you mentioned earlier, a lot of our clues are from asking questions like, “Can you wash your hair? Can you put your hair up? Can you brush your teeth?” I’ve had patients who’ve had to lean against the ironing table while they’re ironing, or have to prop their elbow up to be able to put on their makeup. That’s more women than men. But as you said earlier, a lot of the clues can come orally. Then a lot of times, one of the things that we do now that we’re in a more general thing, and looking at lupus and rheumatoid arthritis [RA] and other autoimmune diseases, is looking back over the notes and saying, “Hey, have you been to see your nephrologist? What did your nephrologist say?” Or, you look over the old nephrologist notes, it says that they were concerned about this, that, or theother, and you can gofurther into that. One of the points to be made, and I’ll let you comment on this, is that it’s hard to do rheumatology visits quickly because you really have to touch on a lot of different things.

 Absolutely. Just the documentation itself can take half the visit. The longest part and primary one is the education, helping them understand, especially for RA, differentiating with OA [osteoarthritis]. That’s a very common conversation. Or what are our shared goals? Why are you on this medicine? And why are we doing the blood work? To make sure you can preserve your functionality, preserve your quality of life, allow you to do your daily tasks. Yes, it involves a lot of effort in person as well.

: I want to thank all those out there who are watching this 

Considerations for the role of telemedicine in caring for patients with SARDs, with deference to the challenges of an accurate patient evaluation.

W. Hayes Wilson, MD

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