Did you know that it is estimated that up to 15-18% of people living with lupus also have Sjögren’s?

Sjögren’s is a disorder of the immune system that is usually identified by its two most common symptoms — dry eyes and a dry mouth. Sjögren’s often accompanies other immune system disorders, like rheumatoid arthritis and lupus.

Watch the replay of our Live Expert Q&A with immunologist (and Sjögren’s patient) Dr. Kara Wada to learn all about Lupus and Sjögrens! In this live session, Dr. Wada shares her experiences as both a physician and an autoimmune patient, while answering the lupus community’s top questions around Lupus and Sjogren’s: 

Transcript: 

Hello, everyone. Thank you so much, Lupus La, for welcoming me here today. Hello, everyone. My name is Dr. Kara Wada. I am a board certified pediatric and adult allergy, immunology and lifestyle medicine physician. I practice at the Ohio State Wexner Medical Center in Columbus, Ohio. I have some family out in LA.

So love visiting out there and love the work that Lupus LA is doing. But in addition to my clinical role in teaching medical students, residents, and future allergies to immunologists, I also do some work in patient safety and physician burnout. And I’m also the founder and CEO of the Crunchy Allergists and the Virtual Showgren Summit, because, as it turns out, getting board certified in immunology is not all that protective against being diagnosed with autoimmune disease.

And I was diagnosed with systemic Sjögren’s, also known as Sjögren’s Syndrome, a little over three years ago. And really, that was my wake up call to say, hey, we’re letting life just kind of happen. It happened within about two weeks of my daughter also being diagnosed with an anaphylactic egg allergy.

And so with no family history to speak of a food allergy or autoimmunity, kind of realized that we needed to take a breath and regroup. And so here I am three years later, have kind of redesigned what my clinical practice looks like, my direction and things, and really love getting the word out about showgrims, which is one of the most common but least talked about autoimmune conditions.

And for anyone who is not brand new to having an autoimmune condition, they tend to travel together.

Having one autoimmune condition increases the risk and the potential for us to be diagnosed with additional autoimmune conditions. And so I want to share a little bit about how that is, why that is, talk a little bit about Sjögren’s specifically, and then also share and go through some of the answers to the amazing questions you all submitted ahead of time.

They were so thoughtful and going to make my job relatively easy on what we should cover and to get those answered as best as I can. As always, this is not medical advice. You need to talk with your own care team to determine what is specifically the best in your individual circumstance.

And it really is so important, despite how our medical. System is far, far from perfect. But doing your best to advocate for yourself and for having a trusting relationship with your care team is so important and it can take a few tries before finding the right fit. So I just want to encourage you not to give up on that journey. So – what’s the difference between allergies autoimmunity immune deficiency? How did those all come into play? And what’s the difference between an allergist immunologist and a Rheumatologist? So my background is both in internal medicine and pediatrics. I did my general training, interestingly, had a lot of symptoms kind of coming up around that time that I ignored.

And then I spent an additional two, three years doing training, specifically learning how the immune system will recognize the outside world as a dangerous signal inappropriately. That’s what allergy is. And also as an allergist immunologist, I am trained in taking care of people with primary immune deficiencies or who develop immune deficiencies as a result of treatment of maybe their cancer or their autoimmune condition.

Sometimes the medications we use can lead to an immune deficiency. And one of the obnoxious things about the immune system is that having an immune deficiency actually can increase your risk of developing allergies or autoimmunity as well. So where does autoimmunity fall into this? Autoimmunity is when the immune system fails to see our own cells and tissues as safe.

And usually that’s a change from how things were for most of us are not born with autoimmune conditions. Very rarely we can develop those quite early and those are actually related many times to immune deficiencies. But this happens over time. So Sjögren’s is considered an autoimmune condition, it’s also sometimes considered an auto-inflammatory condition. There’s a little bit of nuance there in that autoimmune conditions typically will have known blood markers or antibodies that are positive, whereas auto-inflammatory syndromes are immune mediated diseases that may not have autoantibodies or some of those proteins in our immune systems that we can identify on blood work.

And so something that may be considered auto-inflammatory would be Crohn’s or Psoriasis. Autoimmune diseases then would be considered like lupus, myasthenia gravis, celiac disease, where we have pretty well known blood markers that are going to help cleanse. That diagnosis. So, Sjögren’s traditionally is not super well known. And the joke within our community is because the name looks and sounds like a chair from Ikea. It is though, one of the more common autoimmune conditions. We estimate that it may affect up to one in 100 people. Of those individuals with affected, 90% of those are women.

And a good portion of those people, maybe up to three quarters of those people are not yet diagnosed. And that’s why I think it’s really important that we’re talking about this today and that’s for quite a few reasons. One is that somewhere between 30% to 40% of people affected will have pretty normal blood work. So when they run blood tests that are the lupus blood work or the rheumatoid arthritis blood work, the Sjögren’s blood work, all of that looks pretty normal, but the patient doesn’t feel normal. What they are feeling maybe is really fatigued. Feels like you’re just walking through mud to get through the day. And every task takes so much energy and effort. May have a lot of body pain or be diagnosed with fibromyalgia, very common.

The other symptom that is quite prominent that Sjögren’s is known for is dry eyes, dry mouth, and along with that, dry nose. So I will see that on my nasal exam in patients that I’m seeing for maybe suspected allergies or increased sinus infections because what happens are the glands that secrete moisture and mucus are affected. In Sjögren’s, one of the other symptoms that is not talked about as commonly amongst the research papers but is really frequently discussed amongst us patients are symptoms of dysautonomia. That’s another big word. Hard to say, hard to spell, but it is when the automatic nervous system is misbehaving. So maybe symptoms of that can look very different depending on what part of the nervous system is affected.

But that may be heart racing, heart palpitations, feeling dizzy or like you’re going to pass out. Maybe digestive problems, not only because you’re making less saliva and it’s hard to swallow, but because the motility of our gut is not working appropriately.

So those are all across the spectrum of Sjögren’s. And one of the other things that I think can be most worrisome for anyone who is given a diagnosis of Sjögren’s is we very quickly find out, as we’re doing our Google searching and looking and talking with other members of the patient community, is that we’re in an least risk for certain cancers and certain lymphomas.

Lymphoma is cancer of our lymph nodes or of essentially some of our immune system cells. Generally in chogrins, those are very treatable cancers. But certainly anytime we hear we’re at an increased risk of cancer, I don’t know about you, but that makes my anxiety and everything go through the roof, right. It’s worrisome. And it’s why it’s important that we recognize s and identify and diagnose someone with chogrin’s so that we can be aware and be on the lookout and conscientious of lumps or bumps or changes that, oh, my appetite is not great. I’m having fevers. Oh, I noticed my gland seems swollen.

Those would all be really important to get checked out, extra important if you know that you’re at an increased risk of those conditions.

So some of the misconceptions that occur often with Sjögren’s is that it’s just a disease that’s a nuisance, that it is just a disease that causes dryness. But as we’ve kind of discussed, the symptoms can vary widely, and it is really important for us to know what’s going on and have appropriate follow up with our healthcare team.

How is Sjögren’s diagnosed?

When I share my story, I say I was actually pretty lucky. Although I was totally oblivious in hindsight to symptoms I was actually having all the way back into early college. I was diagnosed many years later after my second pregnancy. I was about 35. And as I was taught, I knew the board answers for chogrins. I knew of dry eye, I knew of dry mouth, and I knew of the antibodies, the SSA antibody and SSB antibody, and I knew it affected women. So I knew the answer to the question. I passed my boards. I graduated med school with honors. I did well, but that wasn’t enough. And that wasn’t really the reality of the lived experience of those with chogrins. And you can see really easily how if someone has fatigue and body pain and that’s maybe some brain fog, and if that’s what they’re bringing up to their physician, that could pretty easily be kind of written off. And it wasn’t until my dental hygienist said to me, hey, your mouth looks dry, that I kind of put the pieces together. Oh. I haven’t been able to wear mascara for many years because I can’t tolerate contacts because of my dry eye. Oh. Oh, mouth dryness. I do hurt. I am tired.

I did have some lab stuff that was off in years past, and that’s what then pushed me to kind of build up my courage to ask my primary care doc to draw labs. And it seems ridiculous and I’m in the field that I would get nervous, but also didn’t want to be that patient right, that knows what she wants or comes across as being paranoid about what’s going on. And the reality is I feel in a lot of ways lucky that my labs were blatantly off. They were not great, surprisingly so to my friend turned Rheumatologist. That gives me pause, though, now when I see patients and understand the uncertainty that comes with having normal labs but realizing you don’t feel normal. And so all that to say, it’s really helpful to find someone on your care team who will lean in, who will get curious, and who will help you kind of keep looking.

Because if you are worried about, for instance, Sjögren’s, the next step in testing if your blood work is normal is a little biopsy on the inside of your lip. Typically, or sometimes if you’re in an area that has a Sjögren’s center, they may be able to do some more non invasive testing, like an ultrasound of your parotid gland, some other imaging of your parotid gland. Unfortunately, we don’t have that even at the big medical center that I work at. But those are some other ways to look for inflammation that would be related to Sjögren’s. The other parts of diagnosis may include some evaluation for dry eye to kind of quantify or kind of see, how much are you making in the way of tears? How much are you making in the way of spit and saliva?

And that also can be helpful in making that diagnosis. But at the end of the day, the Rheumatologist, who typically is the physician that is going to be helping guide treatment of chogrins is going to need to put the whole picture together. Your clinical history that’s your lived experience that you’ve shared with them, your symptoms, the time course, along with your labs, along with any imaging, your family history, all of these sorts of things, and work with you to come up with a plan together. And hopefully you’re going to partner with you as a team.

So I’m going to segue a little bit into some of the questions because that’s going to go into a little bit about treatment as well. One of the real bummers about Sjögren’s is that we have not seen the real explosion in targeted immune based therapies that some of our sister conditions like rheumatoid arthritis and now even a little more so with this have seen in the last few years. But there are some targeted treatments that are in the works and in clinical trials.

There are some eyedrops targeted specifically looking at Sjögren’s related dry eye that are in trials. And there also are some other biologics or other protein based medications that are a little more targeted that are in trials as well. Most often though, folks will be started on something like hydroxychloroquine. That’s the medication that I take on a daily basis that’s very commonly used for lupus and generally quite safe and quite well tolerated for most people.

Is it possible the Sjögren’s can be present in a lupus patient but dormant? I’ve had dry eyes and mouth as long as I’ve had lupus, but I also have Hashimoto’s and psoriatic arthritis.

It’s hard to say specifically and again, if I can’t give specific medical advice, but the question that I would be wondering, kind of in the background, stroking my little imaginary beard, is that is this Sjögren’s along with lupus, along with Hashi’s and psoriatic arthritis and or perhaps is the rheumatologist thinking, oh, we’re treating for lupus. We’re also treating for Sjögren’s, essentially at the same time. Where the distinction, I think, would be helpful is in just knowing what to be thinking about from a screening standpoint as we think about some of the long term potential complications or if symptoms become less well, controlled.

What are the next treatments that we might think about as we are coming up with a game plan to take care of that excess inflammation that’s going on? If you have lupus, this is another question. If you have lupus, how can you tell or how can your doctor tell if your symptoms are from a lupus flare or if they’re from Sjögren’s? Well, in part we’re going to ask what those symptoms feel like and how you’re experiencing them.

So certainly if someone had a flavor of symptoms that was related to increased dryness or related to some of those neurologic based symptoms, the Dysautonomia as I mentioned, those would. Things that I’d be thinking is there something else going on? Versus is this more related to having some problems with our kidneys that would be more traditionally associated with lupus. And so that is lab work, your history, those are going to be ways to try to distinguish the two. But the reality is you’re all one human, you’re all one immune system and the immune system then once you get past the surface level, it gets really complicated really quickly and sometimes it may not be possible to distinguish between the two.

What has helped you the most with managing your Sjögren’s symptoms?

So I will say several things. I really, truly believe that being more conscientious of what I eat, my sleep, learning some effective ways to manage my stress, and actually treating some of my underlying anxiety have all been incredibly helpful in increasing my energy levels. Decreasing my pain levels, helping clear up my thinking and helping me show up and be a more present physician, a more present spouse and mom. I have my bad days just like anyone else and you know occasionally, I like to have Jenny’s Ice Cream, which is based in Columbus, is out in the LA area too. We have lots of them all over town and they are really delicious. Especially as we get into, you know, finding that balance I think has been really important too. And then using that along with medication and staying engaged with my care team has also been really critically important.

It also took some rearranging of my schedule. So I’m very fortunate that I have a very supportive spouse, I have a good job, a supportive employer and so I’ve been able to rework my work schedule to support my health, my healing and being able to do things like this too.

Is managing Sjögren’s in someone with Lupus different than if someone has Sjögren’s alone?

There will be some variation. In certain ways the Rheumatologist is going to be thinking about long term potential and consequences for lupus. Those for Sjögren’s, thinking about both of those together. But there is a lot of overlap. So can Sjögren’s cause vaginal dryness or problems? Is it common and. There anything you can do about it? Absolutely. I actually shared in a talk I gave at our summit a couple of weekends ago. It is National Sjögren’s Awareness Month, by the way, so this is perfect timing. But one of the complaints I remember back to is talking with trusted OBGYN pretty shortly after I married my longtime partner and now husband, and I said, hey, it’s uncomfortable. Something’s changed. And it was something that it took a lot for me to actually bring up, even though she was the doc I trusted the most. But it was one of those doorknob complaints, so I was kind of like saying it as she was leaving and it kind of got brushed off. But yes, that absolutely is part of it. It’s common. It doesn’t get talked about because it’s uncomfortable. Right. But there are lots of good things out there to do about it. So within the Sjögren’s community, we talk a little bit and you want to make sure things are compatible with however you are, maybe trying to prevent pregnancy, if that is something you need to be considerate of. But coconut oil is great for all sorts of dryness, lots of multipurpose things. I recommend it very frequently for nasal dryness, mouth dryness, and for vaginal dryness as well. You also can talk with your OBGYN, see if any topical estrogen replacement might be helpful, potentially. And there is an OBGYN who’s very active on social media, Dr. Gunter, and she has a lot of references on which lubricants are the best, based on essentially kind of their chemical properties.

So which ones are going to be the most moisturizing and which are just like marketing claims and things like that. So that’s a great resource for that as well.

Do antihistamines make Sjögren’s worse?

They don’t make necessarily the Sjögren’s worse. They definitely can make the dryness worse, and you’re going to see a lot more dryness with those old school antihistamines like Benadryl or Diphenhydramine, a little less so with things like Fexofenadine or Allegra, which is a little less drying, Zyrtec, also a little less drying, but sometimes sedating for people as well.

Other medications that we’ll commonly use for the pain associated with fibromyalgia can have some antihistamine properties. And so, these all need to just be taken in consideration and discussed with your healthcare team just to see how you can personalize a treatment plan that’s going to work best for what your symptoms are and what you need.

If you think you have Sjögren’s, what should you tell your doctor?

Increasingly, we only have so much time in a visit. It’s the reality of it. I would just be upfront, say, hey, I know you may not like you, but I’m worried about this and I would really appreciate your help in helping me figure out if this is going on or not. And I’d love to have a discussion about it. Could we think about doing lab work or would you be willing to refer me to a rheumatologist? I think just think about it ahead of time. Prepare what you want to talk that can take the pressure off and then just put yourself out there. Part of getting health care as an autoimmune patient, just as a human, is having to get a little bit comfortable with being uncomfortable.

What should patients look for if they might not know if they’ve developed Sjögren’s?

I would be looking out for any of those symptoms. We talked about dryness issues with heart palpitations, heart racing, feeling like you’re going to pass out, blood pressure changes, those are all the big things.

Is it common to get an increase in ulcers with Sjögren’s?

So I’m curious what kind of ulcers? Definitely can see in some people mouth sores. You’ll see sometimes yeast infections with dry mouth actually. Really commonly yeast infections, vaginal yeast infections too, as we see changes in the microbiome. So definitely can sometimes see some oral ulcers with that. Not as often, though, like the palate ulcers that you’ll see in lupus, which tend to not be painful. Other things – if someone’s having increased ulcers either in the mouth or in the vaginal area, they may be wanting to consider Behcet’s (beh-CHETS), which is another autoimmune condition that has ulcers associated with it too.