Providing Answers, Support and Hope in Kansas, Missouri, and Central & Southern Illinois

Question 1

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Host 0:04
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 am very excited to welcome Dr. May Choi, who will talk with us about the visible symptoms of lupus. Dr. Choi is a rheumatologist, clinician scientist and assistant professor at the Cumming School of Medicine, University of Calgary. Her research is focused on biomarker discovery and validation for prediction of clinical outcomes and autoimmune rheumatic diseases, and on the prevention of autoimmune disease development and disease-related complications. Her background and training include a master's of public health and epidemiology at Harvard University, and a lupus fellowship at the Brigham and Women's Hospital in Boston, Massachusetts. We're delighted to have you join us today, Dr. Choi.

Dr. Choi 1:06
It's my pleasure. And thanks for inviting me for this interview. Thank you.

Host 1:11
Thank you. So let's just jump right in. Well, my first question, I know seems really obvious, but I want to start with the basics and talk about the difference between visible and invisible symptoms. So what is the difference between those types of symptoms? And how do those different types of symptoms affect people with lupus?

Dr. Choi 1:33
Absolutely, so lupus is a very heterogeneous disease, meaning that patients can have a variety of symptoms. So visible symptoms may be changes that a patient can experience that can be seen by others. So examples of that could be things like rashes, the most obvious one would be like the butterfly rash, joint swelling, redness of the joints, hair loss, ulcers in the mouth, Raynaud's, which is changes to the fingers or feet, when it's they're exposed to cold temperatures, and swelling around the feet and ankles are just some examples of symptoms that can be visible to others.

But of course, lupus is more than just skin deep. It can cause inflammation internally and affect all types of organs and not and some of these symptoms may not be very obvious, and they may be a byproduct of the organ that's affected and inflamed. And sometimes the only way that we can tell that these organs are affected is through blood tests, or through a physical exam that a physician might perform on the patient when they're in for a visit. So some of these invisible symptoms may be things that are very nonspecific, like fatigue, generalized pain, a brain fog, depression and anxiety. And so it's important to visit your rheumatologist regularly to talk about all sorts of symptoms and the look for other signs of more invisible, and visible types of lupus symptoms, because often patients have both.

And then to answer your other question is, how do they affect patients? I think having these visible symptoms can make it more challenging for lupus patients to cope with their disease. It can affect their work, their relationships and types of medications that they take. So really, I think it's important to address these with their physicians and talk about it earlier rather than later.

Host 3:52
Right, thank you. Um, so I know that you gave just a quick list of some of the visible lupus symptoms, but I'm wondering if you could go into that with a little more detail. And like what are some of the most common visible lupus symptoms? What do they entail and what are some steps that people can take if they start to notice that they're developing these symptoms?

Dr. Choi 4:19
For sure. So I talked briefly about rashes and there are lots of different types of lupus rash many of them are very sensitive to sunlight and they can break out and flare for patients been out in the sun for too long. The most common one associated or lupus is well known for is the malar or the butterfly rash which appears over the cheeks and the bridge of the nose. Some of these rashes can also be very painful.

And then some other common types of visible symptoms would be arthritis, and these can be painful and swollen and red joints that can basically affect any joint in the body. And then other ones that I'd mentioned include hair loss, ulcers in the mouth, Reynaud's, which are the changes in the color of the fingers when exposed to cold temperatures, and just generalized swelling. And that can be a result of things like kidney or heart problems from the disease. And to keep track of these symptoms, patients often bring in diaries that they've kept to keep track of their symptoms in between appointments. There are also apps on their phone that they can use to keep a list of their symptoms and make comments about how they're feeling and whether or not they've changed.

And I also noticed that the Lupus Foundation of America has a pre made checklists for patients to use. And so they can print off this checklist, and keep it handy and have that ready for their physician when they're about to go to their appointment so that they're not forgetting anything.

And then the last thing I wanted to mention is taking pictures of, of symptoms, like rashes or joint swelling, because as we know, symptoms of lupus can fluctuate. And so I often have seen patients come into the clinic, and they're said, you know, I did have this rash, or my joint was swollen at this point, but today, I'm feeling better. And that does happen. And having those pictures on the phone ready to show us is very, it can be very, very helpful. So I highly recommend doing some of those things to keep track of symptoms, especially when lupus is so complex. And there are many different types of symptoms that can appear. And so having those two as backups so that you don't forget to mention them to your rheumatologist at the appointment is very helpful.

Host 6:58
That's great. Thank you. That's really helpful advice. I think that it is important to note that things do come and go. And you know, it sometimes it is hard to remember in between doctor's appointments, everything, you know that Oh, are those days, I think that's difficult for any of us. And I think that it's really helpful for your doctor to be able to see what's happened or look at the journal when they're prescribing what they can do to help with these visible symptoms. So I think that leads me to my next question, which is, you know, what are the treatment options? What help can people get to deal with these types of symptoms?

Dr. Choi 7:44
Yep, so treatment is based on the type of lupus symptom and how severe it is. And some of the treatment options are directly treating the immune system to try to reduce the symptom. And then some medications are really just for symptom control, but don't actually affect the disease. In general, though, all patients should be on hydroxychloroquine or Plaquenil, unless they have an absolute reason to not be on it. And I also encourage all of my patients to practice photoprotection. And so that includes like wearing good sunscreen when they're outside, wearing long sleeve shirts wearing hats to protect the skin. And then there are also some exciting new drugs that are now available are on the way that really help with some of the visible symptoms of lupus like rashes. So I'm really excited about that.

Host 8:40
Oh, that's great. That is exciting to hear. Um, I can I just ask a quick follow up about the photoprotection? Should people wear sunscreen every day? Even if they don't think that they're going to be outside a lot? Should it just be part of their routine?

Dr. Choi 8:59
I think so I you know, it's hard to know. You know, even when you're indoors, sometimes you get exposed to sunlight, right? Or even if you're driving in the car, and you're not really outside, you're still exposed to some sunlight. And I know that there are some lotions and creams that come with some sunscreen in it even though that's not what it's used for. But in general, I think that because lupus patients have such sensitive skin, and we know that sunlight can flare the disease, it's it's a pretty good idea to do that.

Host 9:33
Right. We get a lot of questions about sunscreen, so I I always want to get extra information when I can. So thank you. Um, so my next question is about kind of the emotions around these visible lupus symptoms. What are some of the ways that people with lupus can cope with this, emotionally and psychologically?

Dr. Choi 9:57
So definitely these some of these symptoms that I've talked about, like the rashes can be very challenging because they are very visible, and really affect a person's like quality of life. So not only the rash is obvious, but they can be painful and they can leave permanent scars and that can lead to affecting relationships and work and, and things like that.

So I think first of all, having trying to have a conversation with the people that are around with to try explain what lupus is, because lupus is a pretty, relatively uncommon disease. Many people have not heard of it before, so taking some time to explain to others what lupus is and why you have these rashes might be helpful. Talking to people, like supervisors at work, maybe to help make some adjustments around the work environment and their responsibilities may be helpful. If it's a student, asking for some help around that to not giving them extra time to work on assignments or doing some things at home, if they're not feeling well. I've often had patients come to me to ask if I could write them a note for work or for school because of those reasons.

So obviously, talking to your doctor is very important. Talking through your feelings and talking about some of the things that may not be necessarily about the disease and the medications, but how it's affecting you. Because there are ways that as physicians, we can help you outside of writing a prescription or getting you a blood test or a CT scan, because we have lots of patients who've gone through what you're going through and have access resources that you may not be aware of, or getting you in touch with some specific lupus support groups. So I think that having open communication with your physician is really helpful.

And then taking part in lupus support groups is a great idea too, because then you get to talk to other lupus patients who have gone through, you know, those kinds of visible symptoms and how they've coped with it, and getting tips and advice that as physicians we might not know about or be familiar with, because we haven't lived through that experience. And so those are some of just the ways that they can cope with their visible symptoms.

Host 12:21
So it sounds like one of the ways that people can cope is to seek support, I mean, one of the best ways that people can cope is to seek support. And so I kind of want to flip that a little bit and then say, say, from the point of view of someone who has a friend or a family member, or caregiver, or even a co-worker, you know, and you know someone who has lupus who's experiencing these symptoms, who has a rash, or you know, or is having some, some alopecia, some hair loss, and these things that are difficult to deal with. Because you know, everyone is seeing your illness, just right out there. What are the best ways for the people around you to support a person with lupus?

Dr. Choi 13:08
I think listening to the patient is very important. I think that just being there, to hear them out, you know, they if they're having a bad day, because they're having extreme fatigue, or pain from their disease, I think for other patients or for other people around them who don't understand what they're going through just sometimes being there to listen to the patient express how they're feeling is very, very helpful.

And then asking them, how can they be helpful, because sometimes you think you may be doing something to help them but they might not actually find that to be very useful. And so asking how they can adjust things around the house or at work to be most helpful to them. So that might involve household responsibilities, how can they do things around the house that, you know relieves them of having to do those things that they can't do anymore because they're in pain or because they're so tired. Can they pick and choose activities that doesn't involve going out in the sun as much because as lupus patients, we should try to avoid those kind of things that might exacerbate their disease, being mindful of the activities that they choose to do together as a family or friend.

And just allowing that patient to have time for themselves to take care of themselves. Self care is super important in managing their disease. So allowing them that privacy in that time to really look after themselves and give themselves a mental break is really important.

Sometimes patients bring their family members into their appointments with me, just as somebody who's you know, just there to be another ear, to write down things so that the patient doesn't forget. Sometimes these appointments can be very complicated. We talk about 1000 million things about, about the disease, from their symptoms to their medications and side effects. So having an extra person there to just keep track of what's going on, and to make sure that all of their other patients concerns are really brought forward. And sometimes these appointments can be very overwhelming. So being supportive at appointments is so critical.

And then there are lots of support groups I talked about, and events for advocating for lupus, being there to support the patients for those at those events is also very helpful in showing that, you know, you support the patients in terms of learning about more about their disease and trying to connect them with resources, showing them that you care, and hope that they're getting better is also very...I think patients really appreciate that. And I think, again, the Lupus Foundation of America has a lot of great resources, about lupus events and resources that they can access. And that's public and online. So as friends, family caregivers, they can also access the information and try to help the patients understand their disease better, and what resources they can access.

Host 16:26
That's great. Thank you so much. And I think that that's a really great note for us to end on just this, this emphasis on communication and care and compassion that, you know, people with lupus should have for themselves and the people around them. And, you know, it's such a great way to help people navigate this really difficult disease. So thank you so much for joining us, Dr. Choi, and for talking with us about the visible symptoms of lupus. We appreciate your time and expertise. You've been great.

Dr. Choi 17:01
Thank you, Melissa, it's been great talking to you.

Host 17:05
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/healtheducator or by phone at 1-800-558-0121. And we'd love to hear from you. If there's a topic you'd like to see covered on The Expert Series please email us at info@lupus.org. Thank you and until next time.

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Providing Answers, Support and Hope in Kansas, Missouri, and Central & Southern Illinois

The Expert Series: Visible Symptoms of Lupus