Elizabeth Volkmann, MD, on COVID-19 Among Patients With Scleroderma
In this podcast, Dr Elizabeth Volkmann discusses her experience working with patients who have scleroderma and interstitial lung disease during the pandemic, including the impact of some drugs on vaccine response.
Elizabeth Volkmann, MD, is the director of the UCLA Scleroderma Program and the founder and codirector of the UCLA Connective Tissue Disease-Related Interstitial Lung Disease (CTD-ILD) Program.
TRANSCRIPT:
Rheumatology & Arthritis Learning Network: Hello, and welcome to this podcast from the Rheumatology and Arthritis Learning Network. I'm Rebecca Mashaw, your moderator. And I'm very pleased today to have with me, Dr. Elizabeth Volkmann, who is an associate professor at UCLA, Director of the Scleroderma Program there, and also codirector of UCLA's CTD-ILD program. Thanks for joining us.
Dr Elizabeth Volkmann: Thanks Rebecca, for having me.
RALN: When the pandemic began, patients who take immune-suppressing therapies immediately began to worry about whether they would be more likely to contract the disease and become very ill. Among those varying groups of patients who take immunosuppressants, some patients, such as those with inflammatory bowel disease, seem to have very little additional risk of contracting COVID-19, except perhaps for some patients who are on high doses of steroids. However, you deal with patients who have scleroderma and interstitial lung disease. What's your clinical experience been like over the past two years, in respect to how susceptible these patients have been to acquiring COVID-19. And have you seen a higher incidence in these cases?
Dr Volkmann: Thanks, Rebecca. That's a great question. And I think that this is a population of patients that hasn't been studied, perhaps, to the same extent as other disease groups. But I will say that probably 80% of my patients who have scleroderma have gotten COVID-19, at some point, over the course of the pandemic. I've taken care of a lot of patients with COVID-19 who have scleroderma, both with and without interstitial lung disease. And in terms of the factors that predict, sort of, complications from COVID-19, interstitial lung disease is a risk factor for having more severe COVID-19 complications. Sometimes this relates to the COVID pneumonia that can happen in patients who contract the virus that causes COVID-19. Other times, we see that when patients get COVID, it can cause a flare up of their underlying interstitial lung disease. These could be patients that do pretty well when they have the virus, they don't require hospitalization. But then 3 to 6 months later, as I'm looking at the progression of their interstitial lung disease, all of a sudden a patient who's had stable interstitial lung disease will begin to experience progression.
And it's hard to say what triggered that, but it is possible that the virus could have triggered progression.
RALN: That answers my question about the severity of the disease amongst your patients who get the virus. Some are more likely to need hospitalization, intubation, ICU care?
Dr Volkmann: Absolutely. There's a broad range. And there are some patients where they can have very mild illness, and then other patients where it's much more severe. In addition to underlying ILD, other risk factors for severity include the medication a patient is taking to manage scleroderma, and you alluded this to this earlier in our discussion. Certain medications have been found to predict worse COVID-19 outcomes. And one of those is rituximab, which is a therapy that depletes your B cells. Most of my patients who have been on rituximab, especially those with underlying interstitial lung disease, have had to be hospitalized when they've developed COVID-19. That's one where we were a little bit more worried, particularly because these patients also don't tend to respond to the vaccine as well. Even after we had the introduction of the vaccine, the rituximab was still a risk factor for many of these patients.
Whereas other therapies, we haven't found them to be as predictive of worse outcomes.
One example is, early in the pandemic we were looking at patients who were on mycophenolate, and we published a very small case series. Again, this was within the first couple of months of the pandemic, when we were still learning so much about the virus. And actually the patients that I had who had CTD-ILD—not only just scleroderma, but other autoimmune diseases—who developed COVID-19, if they were on mycophenolate, they tended to have better outcomes. And so to me, it just demonstrated that perhaps there are certain treatments that are more risky than others, but definitely, I think rituximab is one that's been demonstrated in the literature to be associated with worse outcomes.
RALN: You mentioned response to the vaccines. What have you seen amongst your patients, when it comes to their ability to mount an appropriate immune response?
Dr Volkmann: That's another great question. And I think there's different ways to assess someone's response to a vaccine. Obviously, we can measure their antibody response to the vaccine. We can also just track who develops severe COVID afterwards. It's a little bit tricky because there's different ways to measure response. But what I will say is, my patients who have been on rituximab, they usually don't mount that antibody response to the vaccine, even when we wait a long period of time—I've had some patients wait 9 months after their last rituximab cycle to get a booster. We still don't see a response in those patients, unfortunately. Patients I have on other immune suppressant medications—I mentioned mycophenolate is something that I use, I also sometimes use tocilizumab, methotrexate—and these patients, I haven't seen too many issues with having an antibody response to the vaccine. And then in terms of COVID infection, we still see COVID infection in patients who've gotten the vaccine, and the booster, but usually it's a more mild version of the illness, where they wouldn't require hospitalization.
RALN: So for some of your patients, their response to the vaccine is such, that it's kind of like in the general population. They may still contract the virus, but they don't get really sick? They don't require inpatient care?
Dr Volkmann: That's right. And I've also had, and this is more rare, but some patients who decline the vaccine. And among these patients, I've had patients get COVID a number of times. I've had patients who've gotten COVID-19 3 or 4 times since the pandemic started, who have chosen not to be vaccinated.
RALN: And how have they fared over the longer term?
Dr Volkmann: How are they doing now? It's a good question. And again, because it's just a few patients, I don't want to make big generalizations, but I'd be happy to share my experience. And that is that depending on the variant, that really affected how they did. Early variants of the virus that causes COVID-19, patients likely had to be hospitalized who had underlying interstitial lung disease. These later variants, sometimes they don't require hospitalization. I also think, in some of these patients I've had who've declined vaccine, they've had more lingering effects of having had the infection. These, what's referred to as long-haul symptoms, I think, are more prevalent in these patients that have declined vaccines.
RALN: That was another question I had for you. And that is, are you seeing increased rates of long COVID amongst your patients?
Dr Volkmann: Yeah, it's difficult for me to say because a lot of the symptoms of long-haul COVID overlap with some of the symptoms that can just be due to the patient's underlying autoimmune disease. I'll give you an example. I had a patient with scleroderma, no interstitial lung disease. And when we went through the questionnaire about long COVID symptoms and if she's experiencing any— lot of them are fatigue and headache—and she was like, "I've had these every day since I was a teenager." I think for some patients it's hard to know whether these symptoms are due to actually COVID, or to just their underlying autoimmune disease. And that makes it challenging for patients, but also for providers, because we have some idea about how to treat autoimmune disease symptoms, but I think we have less of an idea how to treat COVID long-haul symptoms. We usually try to treat as we would if it was due to the underlying autoimmune disease. And if those symptoms persist, then we might think, okay, this is more likely to be due to the long-haul COVID symptoms.
Dr Volkmann:
There's now a new, and apparently very contagious, variant. Again, fewer people are ending up as inpatients, or in ICU care with it, but have you changed your advice to your patients about the steps they should take to protect themselves? And have you seen any change in that vaccine hesitancy that you remarked about earlier?
Dr Volkmann: I think that, as the variant becomes more contagious, also this variant seems to be causing less severe illness. I do find that some patients are becoming a little bit more lax about getting their next booster shot. And I think a lot of patients, and even health care providers, are waiting for the next vaccine to come out, that might be even more protective against these new variants. So there is, I would say, a little bit more hesitancy right now, because I think patients are anticipating something new that's going to come out in the fall. And they're also feeling like, "Well, my friend just had this, and they were only sick for a day or two. So, I think I'm going to be okay." There's a little bit more hesitancy now.
RALN: What do you think the future holds for your patients who have scleroderma, or connective tissue disease, and ILD, as we continue to deal with this pandemic? Because it doesn't seem like it's letting us off the hook anytime soon.
Dr Volkmann: It's true. And what I try to work with my patients on is finding a healthy balance between being safe and protected, but also trying to maintain a quality of life, and doing the things that are fulfilling. Because I've had some patients that, due to the fear of this virus, really isolated to the extent that they never went out, they never did any activities that brought them joy. They weren't seeing their family or friends. And this led to symptoms of anxiety and depression, that can also be troubling for a patient to experience. I work with patients, and it's very individual. For some patients it might be, "Okay, now I feel comfortable just going out for a walk in the park every day." And for other patients they're like, "I'm ready to travel to Europe."
Everyone has a different, sort of, comfort level. And I try to tailor what I recommend to them based on, number one, their risk factors, but also, what things bring them joy. And if they're really missing out on something that brings them joy, that can have a harmful effect on their overall well-being. I think for all of us, not just patients with autoimmune disease, we're really entering this time where we need to find this healthy balance between being safe, but also living our lives in a way that brings us fulfillment.
RALN: Great point. Have you made any changes in the medications that you prescribed for your patients, in the context of the pandemic? Are you using less rituximab than you were before?
Dr Volkmann: I think for patients new to rituximab, I would say I'm starting it less often. And I'm usually having a big discussion with the patient about the risks and benefits, before we were to start it. But there are patients that I have who've been on rituximab, and it's worked really well to control their underlying autoimmune disease. And these are often patients who have tried, not one, but often two, three, other treatments that didn't work for them. And so they're very dedicated to staying on their rituximab, and I support them with that because I understand what they went through, going through years of trying different therapies and not having any success. For those patients, I... Again, I just support them. I continue to prescribe it. These patients, we try to time when we do the booster, at a time when maybe they're not so immune-suppressed from the rituximab. And I try not to have them on steroids, or other things that might suppress their immune system further.
RALN:
Well, thank you very much for talking with us about this today. It's very interesting. And we'll be checking back with you later, to see how things are going for you and your patients, as this continues.
Dr Volkmann: Thanks, Rebecca. Have a great day.
