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The Expert Series: Remission: Can my lupus go away?
There is no set definition or timeframe for what counts as lupus remission. It’s no wonder lupus remission is a confusing topic!
This month, Dr. Ronald van Vollenhoven, director of Amsterdam Rheumatology Center in the Netherlands, shares his expertise about lupus remission and inactive lupus and what it means for lupus warriors.
Read the transcript
The following transcript is automatically generated and may contain typos or misspellings. Please listen to the episode for the most accurate language.
Welcome to The Expert Series brought to you by the Lupus Foundation of America. Our health education team is here to bring you experts in lupus to discuss topics to help you live better. Thank you for tuning into today's episode. My name is Melissa and I'll be your host. I'm very excited to welcome Dr. Ronald van Vollenhoven, who will be talking to us about remission. Dr. Van Vollenhoven is chair of the department of rheumatology and Clinical Immunology at the Amsterdam University Medical Center and director of the Amsterdam rheumatology center. His research interests focus on the development and systematic evaluation of biological and immunomodulatory treatments for rheumatic diseases. We're delighted to have you join us today Dr. Van Vollenhoven.
Dr. Van Vollenhoven 0:52
Great to be here.
Thank you. So let's get started. And we'll jump right in. As I'm sure you can imagine, we get a lot of questions about remission and whether lupus can just go away once someone has been diagnosed. I think everyone with lupus hopes for remission. But as there's so many other things related to lupus, there's a lot of uncertainty and unpredictability. But I'd like to start with the fundamentals by asking what is remission?
Dr. Van Vollenhoven 1:18
Well, so it turns out that people have slightly different ideas about what remission really is, it's sort of intuitive, but if you try to get your head around it, you might come up with slightly different versions. So for some people, a remission is a state where you are completely free of the disease, and where you can basically forget about it like being cured of the disease. But for others, that's not a useful way of thinking about it, because that would be almost impossible to achieve. So for many of remission is when the disease is really under control, and you don't have the symptoms, you're not experiencing the discomfort. But you are in fact, still you know, someone who might be getting a relapse or a flare, and you might have to be taking some medications. So that's a big difference between the way people can think of it and then for some people, it's very important that they have no symptoms at all. Whereas for others, it might be that it would be the symptoms that are directly related to the disease activity, versus those that may be more indirect. So when we started looking at remission, it turned out that there were different ideas among different expert physicians, but also among patients, and there were quite a lot of differences of opinion.
So it sounds like there is a lot of uncertainty there. And I want to go back to one thing, you said that it might seem like the lupus is cured, but but lupus, the lupus wouldn't be cured if someone is in remission. That doesn't mean they're cured, correct?
Dr. Van Vollenhoven 2:55
Yeah. So while we started having this international discussion with patients and experts from different medical specialties, we did try to narrow it down a bit. And we said, remission is not the same as a cure. But it's also not just that you're feeling good, you know, it has to be, it has to be more than just feeling good for the moment. But it doesn't have to be a complete cure. So it's somewhere in the middle of those things. And we ended up with a definition that it's a state where the activity of disease is completely under control, and where you're experiencing no symptoms that are directly related to the activity of the disease. But you may have to deal with other symptoms, it may be that the disease has already caused some damage, which it cannot be taken away again, you know, and it may be that you have to take some medications to be in that state.
Okay, that's interesting. So is it based solely on symptoms that people experience? Or are there tests that doctors can do? How can a doctor tell if someone is truly in remission?
Dr. Van Vollenhoven 4:04
I was mentioning symptoms, but of course, it's a complete picture. So it's the symptoms which the patient experiences, but it's also the signs of the disease which the physician can observe, like a rash or a swollen joint or something on a blood tests like a laboratory abnormality that indicates that something is awry. And those would all have to be okay for it to be a remission. So to remission assessment has to be based on a very comprehensive assessment and evaluation of the patient's status.
Interesting. So, so say someone does achieve this. They you know, their doctor agrees they're in remission and they feel good. How long can can this last? I mean, is it a temporary or can it last for some time?
Dr. Van Vollenhoven 4:54
Well, the question that you're asking me is if there is a difference in the remission that is just for the moment sort of that lasts for weeks or months or even years. And of course, that last goal is what we really wish for that the remission of can be sustained for a very long time or indefinitely. But the definition of remission has to be just what it is right now. Because otherwise it would be sort of like as like, like a snake that bites its own tail. So you have to say what it is that you want to achieve. And then you can say, okay, but I'm going to try to achieve this for at least three months in a row or for at least a year, and then see what it is that what steps you have to take to make that possible. But it is it is true that a remission, which is only present for the moment and may be lost again, very soon, it's not worth very much. I do agree with that. I just think the definition of remission has to be something that you can apply, the moment you assess the patient.
Okay, so from a clinical standpoint, a remission is, you know, anytime, even if it's only, you know, for that 24 hours, if it meets the criteria, it doesn't have to be like you have no symptoms for three months, or six months or anything like that.
Dr. Van Vollenhoven 6:12
Yes, but I want to emphasize that that is only because when you work on a definition, you have to be, you know, it has to be purposeful. And the reason we're, you know, trying to get a clear definition of remission is also because then we are going to use it in various situations, including in care. And when you're we're trying to develop the treatment plan for an individual patients between the patient and her or his physician, then you have to set the goal. And of course, it could be that you say okay, I would like to achieve a remission for the coming six months. But then you the definition of remission doesn't have to include the six months, that's something that you already are adding on to it.
I see I see. So I also want to go back to something that you mentioned earlier about taking medications and saying the you know that if you're in remission, then the lupus is completely under control. But that doesn't stop any damage that might have already occurred that you take medication for. So does a person in remission need to keep taking lupus medications and seeing their rheumatologist or is it not remission if you have to take your lupus related medication?
Dr. Van Vollenhoven 7:30
Yeah, again, this touches very much on what your ideas if you say remission, and it turns out to as I mentioned, already, people have different ideas. In general, in medicine, if you look elsewhere and other disease areas, people will accept that you can be in a remission, but you have to take medications to keep it that way. That is how it is applied in areas like rheumatoid arthritis or spondyloarthritis, or outside rheumatology in general medicine. So I do think it's okay to say that you can be in remission, but you still have to take medications to control the lupus. Now, first of all, you can say that, it would of course be ideal if you didn't have to take medications to control the lupus. And of course, we all realize that it's just that remission is not the same as a cure. So we will accept a certain need for medications to achieve it. And to keep it that way. The second thing is that it is not going to do to have just any kind of medications all the time because especially with corticosteroids, we know that they can work very well. But of course, with long term use, especially they cause side effects and some devastating ones, if kept at too high dosages for too long. So we say that for maintaining remission, there is sort of a cap on how much corticosteroids you're going to accept. And that's for remission is five milligrams a day.
See if someone is in remission, but maintaining their medications? Are there other things that they can do to help them stay in remission? Are there things that people should do to stay in that state of having everything completely under control?
Dr. Van Vollenhoven 9:12
Yeah, I mean, first of all, I'm not want to say that it's only medications that matter. There's a lot of other things and of course, most of those of those who do live with lupus are aware of the role that sunlight exposure and exposure to other sources of ultraviolet light can can bring and that it is important to keep it in mind. There are also many things that we do not fully understand why generally healthy lifestyle will help for a lot of things. And this is hard because generally healthy lifestyle is probably a little different from the average lifestyle in Western developed countries. So it means moving more if you know, attention to what you're eating, and and things like that how to deal with stress in life. We to look and learn, and I think I, myself am not the exception. So we all can do these things better. And they do help. So I do think that everybody should also keep trying that. But then yes, it will probably be necessary for many that were in remission to keep on taking some medications. And of course, what we do feel in the general area of lupus, that anti malarial medications hydroxychloroquine, or Plaquenil are very important medications to maintain the remission, other medications may be chosen because the experience teaches us in the individual patients do remission is not going to be maintained without them. But of course, in the long term, we hope that even without medications, the person can be in remission.
That's really interesting. So my next question then is, so we've talked about how to keep someone in remission. But those things that you mentioned about staying in remission? Is that a way to help someone get to remission, say, someone who's lupus isn't under control? How can they increase their chances of getting to remission?
Dr. Van Vollenhoven 11:08
Well, I think achieving remission is, of course, the first goal when the person has an active lupus manifestation or multiple lupus manifestations. And the armamentarium is still somewhat limited, but it is getting better. So for the immediate relief of symptoms, and the immediate control of disease we use, we usually do have to use corticosteroids because they work so fast, and usually at higher dosages. But as I mentioned already earlier, that it's not something that you can maintain for very long, then there are anti-malarials, which are very stable medication for long term use, but usually not so strong that they can avert in a very significant lupus activity. And then there are the immunosuppressants, and there's quite a lot of them from previous former times, but also some nuanced and that also does include the biologicals and there's now more approved biologicals than there were before and I think that there will be more even in the future. And altogether, what we want to achieve is that the patient who has experienced a very significant lupus activity, a flare, a very persistent or, or a sudden increase, that we will get them to be in remission quickly, but quickly in lupus is unfortunately not a matter of just days, it may take a few months, or even longer. But we do want to use all the medications that I just mentioned in the right combinations in the right sequence to get the patient information. And then the question is, what's the minimum that's needed to maintain the remission? And those are two different questions. So I think we are also very interested in using different approaches to define the actual treatment for getting the patient in remission, and then the maintenance treatment for keeping them there.
Okay, I see because the ultimate goal is to avoid the damage that can can't be reversed, right.
Dr. Van Vollenhoven 12:57
One of the treatment goals clearly is to prevent damage. And we know that lupus activity B gets damaged, if you have a lot of arthritis with actually inflamed joints, not just painful, but really the actual inflammation in the joint lining the synovitis. With the pain and swelling, it can actually lead to damage in the long run. Fortunately, it doesn't always do that. Same thing, skin inflammation, it may cause scarring in the long run inflammation in an organ, for example, in the kidney, if you let it just go, then it will lead to kidney damage. So there's in each of the different manifestations of lupus, there is the built in risk, that will lead to damage. So treatment is not only for providing the patient with relief of symptoms, but also to try to avoid any of the damage if at all possible. And most studies show that we are able to prevent most damage by treating aggressively but unfortunately, not all, there's always a balance between the risks of the treatment, which may also be there. And then the benefit, which is clearly the control for the disease and prevention of damage.
Right. Yeah, I think that's important to talk about that that balance. And that's something that that doctors and patients work out between themselves talking about preferences and goals.
Dr. Van Vollenhoven 14:20
Yes, and we obviously need to involve the patient in these discussions for some risk risk is different than from others. So if some some people say that, well, I will have accepted this medication can help me but what are the possible side effects? And there's usually not so much a side effect that happens in all cases, but there is a risk for a side effect. So if somebody may say that, well, I take this medication, what will what is the possible side effect possible? What's the risk and the answer could be, this may make you a little bit more susceptible susceptible to infections. And for one person that may be Yeah, you know, something that they accept and they can live with it for another day, it may be very scary and frightening. And in the patient physician interaction, we need to explore what's, what's the right balances, and it's not the same for each patient.
So as I said, at the beginning of this, we get a lot of questions about remission. And so I wanted to ask, is remission possible for everyone with lupus? Or are there some people who might not ever achieve remission? Ooh, that's
Dr. Van Vollenhoven 15:30
a difficult question, I would have to say that today with the treatments that are at our disposal, it is possible to achieve remission in the majority of patients. But not very quickly, we cannot promise it in the short term at date, it takes some time. And it may take a long time in some individuals, and there may be some who have either through, you know, through bad fortune or because the disease has already been, you know, they've been dealing with disease for a long time, it may be that it's not possible to achieve remission. Now, that's not saying that we always make remission, the goal of treatment in the short term, because like I said, sometimes remission is possible, but it takes a long time to achieve it. And sometimes we set the goal for the next few months, for example, a little bit more modestly, like we would say low disease activity is also acceptable in the three months timeframe, but for long term, I think remission should be the goal.
Okay, so yes, I'm going to take the good news out of that, and say, and repeat that for most people, some sort of remission should be possible. So it's important to keep working with your doctor and, you know, keep taking the medications that you're prescribed and to not give up on achieving that goal of feeling better. Would you say that? That's completely agree? Yeah. Yeah, so I like I liked the good news that's in there. I do think that, you know, it is very exciting, all of the new research and, you know, new options that are becoming available for people after so long of not having those new options. So it's definitely worth worth it to keep trying, even if it takes a long time. You know, and it feels frustrating. So my, my last question for you is, you know, let's say that someone is in remission, and then they feel like their lupus symptoms are beginning to reappear. You know, what, what should they do? And at what point should they take some action to address that?
Dr. Van Vollenhoven 17:41
I have great respect for for individuals who have lived with lupus for a long time, and they can usually tell me what it is that they should be alert for, because it's not the same for each individual. So I think some that have lived with this disease for many years can tell you exactly when they need to take action, because they've experienced it, they will be able to tell me what they should be alert for. And it's not the same for each individual patient. I think that for some it is a clear manifestation such as a skin rash, which suddenly appears swollen joints a pain on the chest that is from pleurisy, where the pain is attached to the breathing. And for others, that may just be a general feeling, but they have experienced it before they know this is a sign of a Lupus flare. Of course, for those who have had this disease for a shorter time who may or may have recently been diagnosed, that is not very helpful advice. And I would have to say that if you're unsure about whether your lupus may be acting up again, it is better to seek medical attention one times too often than to not seek attention when it is in fact a lupus flare.
Okay, I think that's good advice. So it's better to err on the side of caution and to contact your doctor, rather than wait and see if it turns into something more serious.
Dr. Van Vollenhoven 19:05
Yes, I would have to say that, especially for those who have maybe been diagnosed recently, or whose course has been rather stormy and unpredictable. I think that's better to be safe than sorry. Of course, at some point. Lupus tends to breed true. So if you've lived with this disease for a number of years, you probably know your disease pretty well. And you can steer a little bit based on your previous experiences.
Okay, that's great. Thank you. So that was my final question. And I want to thank you for offering us your your expertise and your time and of course, thank you for everything that you've done for people with lupus. Obviously, until there's a cure, I you know, we hope that everyone who has lupus is able to achieve remission or, you know, low disease activity so that they can live a higher quality of life. So thank you, Dr. Van Vollenhoven for joining us today.
Dr. Van Vollenhoven 20:09
Thank you very much for having me.
We invite those of you listening to check out past episodes of the experts series by visiting lupus.org/theexpertseries, where you can also subscribe to get alerts when podcasts are released. If you have any lupus-related questions, please reach out to the health education specialists by email at lupus.org/health educator or by phone at 1-800-558-0121, we'd love to hear from you. If there's a topic that you'd like to see covered in the expert series, please email us at firstname.lastname@example.org.
Thank you for joining us and farewell until next time.
The Expert Series is an educational podcast series featuring leading lupus experts with a focus on helping you live well with lupus.
- Episode 1: Managing and Preventing Flares
- Episode 2: Financing Your Medical Care
- Episode 3: Tips for Managing Medication Side Effects
- Episode 4: Diet and Lupus: Separating Fact and Fiction
- Episode 5: Lupus and Brain Fog
- Episode 6: Lupus and Men
- Episode 7: Complementary and Alternative Medicine
- Episode 8: Clinical Trials and Lupus
- Episode 9: Lupus 101
- Episode 10: Exercise and Lupus
- Episode 11: Lupus Lab Work and Blood Tests
- Episode 1: Skin Lupus - Beyond the Butterfly Rash
- Episode 2: Becoming a Self-Advocate
- Episode 3: Lupus and Heart Health
- Episode 4: Lupus and the Kidneys
- Episode 5: Preparing for a Doctor's Appointment
- Episode 6: Childhood Lupus and Mental Health
- Episode 7: Vaccine Safety and Lupus
- Episode 8: 5 Common Questions About Diagnosing Lupus
- Episode 9: Planning for Pregnancy with Lupus
- Episode 10: Lupus and Eye Health
- Episode 1: Lupus Foundation of America Health Educators and Resources
- Episode 2: Fatty Acids and Lupus
- Episode 3: Mental Health and Wellness During a Time of Uncertainty
- Episode 4: Telehealth and Lupus
- Episode 5: Reproductive Health and Lupus
- Episode 6: The Impact of Racial Trauma on Mental Health
- Episode 7: Kidney Health and Lupus
- Episode 8: The Importance of Support
- Episode 9: Trust and Participation in Research
- Episode 10: Advice from the Community
- Episode 1: Lupus and Physical Activity
- Episode 2: Top Questions about Skin and Hair
- Episode 3: Managing Your Journey with Lupus Nephritis
- Episode 4: Improving Health Visits for People with Lupus
- Episode 5: Could It Be Lupus?
- Episode 6: Men’s Health and Special Considerations with Lupus
- Episode 7: Making it Work with Lupus
- Episode 8: 2021 Lupus Treatment Research Updates
- Episode 9: Lupus Myths and Realities (podcast in Spanish)
- Episode 10: Diet, Nutrition, and Kidney Health
- Episode 11: Caring for Caregivers
- Episode 12: Winter Wellness
- Episode 1: Medication Management
- Episode 2: The heart and lupus
- Episode 3: Recursos Financieros Para Personas Hispanas/Latinas con Lupus (Financial Resources for Hispanics/Latinos with lupus)
- Episode 4: Lupus and Antiphospholipid Syndrome (APS)
- Episode 5: Self-care & self-management for people with lupus
- Episode 6: Fertility and reproductive health
- Episode 7: Participating in Clinical Trials
- Episode 8: Lupus and the Eyes
- Episode 9: Respuestas de nuestra educadora de la salud
- Episode 10: Health Disparities and Social Determinants of Health
- Episode 11: Lupus and bone health
- Episode 12: Step therapy and access to medications
- Episode 13: Remission: Can my lupus go away?