#87 Dr. Kara Wada on Sjögren’s, ILIT, and Reimagining Immune Care
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This transcript was generated using AI software from the original podcast audio and may contain errors, omissions, or minor inaccuracies. It has been lightly edited for readability. Please refer to the full podcast episode for the most accurate representation of the conversation.
Kara Wada, MD
My second year as a full fledged allergy immunology doc, I had just come back from having my second child. I was absolutely exhausted. My body hurt all over, and I went to the dentist for like a routine checkup and the dental hygienist said, Hey, Kara, your mouth looks dry. Are you on any medicines that are doing this? Is there anything going on? And it was that comment that kind of then brought into the picture some other health issues that I had had over the preceding, gosh, five or 10 years. I ended up being diagnosed with something called Sjogren's Disease, which, what I know now is actually one of the most common autoimmune conditions.
Amanda Whitehouse, PhD
Welcome to the Don't Feed the Fear podcast, where we dive into the complex world of food allergy anxiety. I'm your host, Dr. Amanda Whitehouse, food allergy anxiety psychologist and food allergy mom. Whether you're dealing with allergies yourself or supporting someone who is, join us for an empathetic and informative journey toward food allergy calm and confidence. What happens when the doctor becomes the patient?
Today, Dr. Kara Wada is here to tell us all about that. You may know her as the Immune Confident MD. She's a board certified allergist, immunologist, and physician who brings a unique perspective to immune system care. Dr. Wada doesn't just treat allergies and autoimmune conditions. She's a food allergy mom and she lives with Sjogren's disease.
That lived experience has shaped how she practices medicine and her unique perspective on lifestyle centered approaches in this episode, we talk about Sjogren's, about what it feels like to navigate a fragmented healthcare system, both as a provider and from the patient side, and a lesser known, but well researched allergy treatment called intra Lymphatic Immunotherapy. It's abbreviated ILIT, and you'll hear Dr. Wada call it ILIT throughout the episode. I have heard almost nothing about this other than what she shares on social media, so I was really excited to learn more, and I hope you will be too.
Today I'm so excited to have with us Dr. Kara Wada. Can you please introduce yourself and tell us your background and then how you ended up in this field in such a unique way that you're showing up in it?
Kara Wada, MD
Yeah, so I'm so excited to connect Amanda. I've been so looking forward to this conversation. My journey has evolved, and honestly, I didn't have what I'm doing on my bingo card is kind of the, the short story. Early on knew I wanted to be in medicine. I looked up to my pediatrician, and was just always drawn to a field where I had that human connection and helped people feel better. I also though, along the way found my favorite class in undergrad was a, a course they offered just once. I went to a very small liberal arts school and it just so happened that they offered an immunology class. During a semester that I was there, then I was able to take part in and I thought, oh gosh, um, maybe I'll like this enough where I won't have to go through this whole thing of like applying to med school. Maybe I'll really like the lab work. I loved the science, but I loved the connection to like the case vignettes. Something that was really cool about that course was we not only were learning the science about immune system proteins and cells and how they communicated vital information from across our body, but they also did that in a clinical context, which for an undergrad class is. Pretty cool.
And it wasn't really until, you know, later on though, that I reconnected with that late into my residency. So went through medical school knowing I wanted to take care of both kids and adults. And so I did residency in both internal medicine and pediatrics, and then about two and a half, three years into residency, rediscovered, uh, the field of allergy immunology. And within a week of spending time in the pediatric clinic, I was like, oh, we've got it like this, this heaviness that had been on my shoulders of trying to figure out what the heck I was going to do with my life just seemed to lift.
And there was this lightness that I was like, oh, this is what I need to do with my life. And so I had to scramble to apply and, and all of that for fellowship. I thought when I finished my training, I was going to focus on drug allergy. So as I was coming out of training in about 2015, there's a huge push, about 10% of the population believes that they're allergic to penicillin. And what we've realized is that that label alone increases your risk of actually worse outcomes, worse health outcomes in a few different ways. If you look at the data of that 10% of people who think they're allergic, only about 1% actually are allergic. So there's a whole lot of people walking around at increased risk of badness because they're not getting penicillin when that's actually what they could get. So that fascinated me and I was like, okay, this is cool.
And then my second year as a full fledged allergy immunology doc, I had just come back from having my second child. I was absolutely exhausted. My body hurt all over, and I went to the dentist for like a routine checkup trying to get caught up on self-care, which had kind of been pushed to the back burner. A mom and someone who's working kind of more than full-time hours. And the dental hygienist said, Hey, Kara, your mouth looks dry. Are you on any medicines that are doing this? Is there anything going on? And it was that comment that kind of then brought into the picture some other health issues that I had had over the preceding, gosh, five or 10 years. It was like, oh. Okay. I have dry eyes too. I can't wear contacts and if I wear mascara, I look like a raccoon. I have back stiffness that's really bad. I'm really sore and that's always better when I'm pregnant. And that's weird because most women when they're pregnant have back pain, but mine went away.
And so, you know, it's kind of these little breadcrumbs or puzzle pieces that with the context of my professional background, it finally clicked into the place that, oh, I think there might be something autoimmune going on, and I need to get that checked out. And so, to make a long story, a long story longer, I ended up being diagnosed with something called Sjogren's Disease, which, what I know now is actually one of the most common autoimmune conditions. It's thought to be rare, but it's just rarely diagnosed.
There's a big gap in our understanding of clinical and what, what is taught, there's a big gap between that and then the reality of the science that's actually out there. So it affects about one in a hundred women. Profound fatigue, body pain often has symptoms very similar to fibromyalgia and often maybe diagnosed as fibromyalgia. And then dryness is another kind of key feature that very often is associated. For some people that dryness can come along later in the disease course.
Within two weeks of that diagnosis, my infant Josie, she had an anaphylactic reaction to egg. And so it was this rude awakening of like, well, gosh, what the heck is going on? One, we were always in survival mode. I met my husband in med school, so you know, two physician household and two kids. We don't have family support nearby, so we're kind of relying on our daycare family and trying to do everything on our own because that's what we saw from our, our parents growing up. We both were super fortunate to have, um, stay at home moms and so we, I don't think we appreciated how much work our moms contributed to our family growing up.
So that set me on this path of learning about lifestyle medicine and getting certified in lifestyle medicine, exploring a bit of functional medicine in, in large part trying to create medical care that's what I would've so wanted when I was first diagnosed, or even before I was diagnosed and had symptoms, but didn't really recognize.
So, gosh, that was a mouthful
Amanda Whitehouse, PhD
Well, it's, it's never simple. Right? And I, it's always interesting to me, just because of the prevalence of allergic diseases and autoimmune conditions, there are many of you who are like, I'm going to go into allergy, and then you, you know, obviously end up with some of that on your own plate. It's an interesting path. I wonder what that's like.
Kara Wada, MD
Yeah. From physician to patient to allergy mom all so quickly, gosh. I think it was very humbling about five to six months after my diagnosis. So as a typical Type A, you know, I was like, okay, I got this diagnosis. And the thing with Sjogren's is even as of the date that we're recording this, there are currently no FDA approved treatments for Sjogren's disease. Now reality is that should be changing soon. And maybe even by the time this is published that that may have changed.
But at the time I was diagnosed six years ago, these things were still very early stage. And so essentially patients would be put on, they would either have watchful waiting and just kind of say tough it out. Here's some Cymbalta to help with your body pain. You know, high five or they'd start something called hydroxychloroquine, also known as Plaquenil. It's an old malaria drug that is first line treatment for lupus and a few other autoimmune conditions. And generally it's pretty well tolerated safety profiles, not terrible, but it's also not super potent. Um, and it takes a good three to six months to see it, you know, see some improvement from it. And then there's this huge gap.
So one of the issues with Sjogren's that's most worrisome is that 10% of patients will develop lymphoma because in this condition, the B cells, which are part of our immune system, are a little extra excited. And when B cells get extra excited, they have a tendency to go rogue, and that's essential lymphoma. And, uh, and so when things get really bad, they'll use something called rituximab, which wipes out essentially half of your immune system, it, it wipes out those beet cells and antibody production or protein production. And that's a big deal.
Frankly, in my role as an allergist immunologist, we don't only take care of allergies, we also take care of people with immune deficiencies. And some of those people are born with a low immune system. But also we take care of folks who have low immune systems because of amazing advances we have in modern medicine, but they have some consequences and sometimes the consequence is that those B cells don't come back. And so sometimes folks who've been on that medicine for some time end up needing antibody infusions or IVIG IgG infusions to replace what's missing. So I knew it kind of from that negative context and I was like, oh, I want to do everything I can to avoid needing that. And so that's where I really tried to double down on lifestyle.
Well, that's all fine and good, but if you come to that from a mindset of perfectionism and, kind of magical thinking of like, if I get this exactly right, it's going to go away, and you feel some desperation in like, there's a superfood supplement that I was getting a lot of marketing through Facebook and Instagram ads and so forth. And I ended up with pretty significant liver injury from it, liver biopsy, like this whole thing. And so you know, thankfully I stopped that my liver got better.
I saw how hard I had to fight for care and I had every single privilege in the world I good insurance. I had a super supportive spouse who is like very medically literate. I'm very medically literate. I have people's cell phone numbers. The liver specialist, my husband, kind of helped train him. He was a couple years behind us, so we had a cell phone number so I could say, Hey Mike, we need to do something. My levels keep going up. Like, and I still had to really push to get care. And I was like, well, you know, once the dust settled and I felt better, I was like, well, four letter word, what does this mean for everyone else? And how can I turn what was not a great situation into how can I turn those lemons essentially into lemonade? Which sounds cheesy, but you know, like you turn your pain into purpose.
Amanda Whitehouse, PhD
Yeah. so much of what you talk about and what I'm drawn to you about is that holistic approach and that that functional approach to how the body is working. But then like you said, our coping skills can go into overdrive and, and how detrimental all of those great ways that, all those things that got you through medical, medical school, are the things that probably then did not help your immune system to recover once they were too much and too draining and all of those things.
So it's interesting to hear that from someone on your side of the conversation and I appreciate you sharing because it's important to know, but hard to, hard to change.
Kara Wada, MD
Right. No, I think that, but that I think has been one of the most powerful aspects over, you know, the last five or six years of going on that journey of learning these different, you know, I say like tools in your toolbox of journaling and mindset work and mindfulness practice and self-compassion and, and just letting go of the guilt that comes along with asking for help or, I am, I'm super fortunate that I have the ability to pay for some additional help in some ways and. That has been, I think, the most profound change.
One example I would use up until January of this past year, I, I was on faculty at Ohio State. Through training and the first couple years of my life as an attending physician, I would look ahead at my schedule and I would start to catastrophize, like, oh, I'm overbooked. Oh gosh, this patient is scheduled here and there's not enough time for this patient. Like this patient should have been in an hour visit, but they're in a 30 minute visit. In particular, I'm not the fastest. I like to take my time. Um, maybe not surprising given I'm, I'm kind of a talker. But, and, and it would create these worst case scenarios and I would create so much suffering and stress.
Even that whole night before, sometimes I'd look ahead like on a Friday at Monday, right. And I'd worry all weekend and then, you know, at least half the time, if not more than half the time, someone would late cancel. Or you know, someone who had been on a pretty like rough trajectory and I thought maybe was going to be a more challenging visit because you know of whatever was going on, they'd be doing great and things would be awesome. And it was a quick visit and like, what I realized, and I needed someone to help me learn this right, was that I didn't have to allow my, like, I didn't have to do that to myself. Mm-hmm. Yeah. It wasn't anything, right? That's the illusion.
My cortisol, stress not sleeping well, all these, it's like, oh gosh. And thinking back, that was kind of my MO. All through life up until I was probably 33.
Amanda Whitehouse, PhD
I'm curious, and maybe there's not data on this, but do you see that approach or that coping style more often in patients with autoimmune conditions, is that a contributing factor, would you suspect?
Kara Wada, MD
It wouldn't surprise me. I opened, my practice, the Immune Confident Institute in late March of this past year. In our practice, I would estimate is probably about 40% of our patients have Sjogren's in part because, it's a very underserved condition and I'm very vocal about it. I also see probably an equal number of patients with MAST cell disorders. So, allergic flavor of disorders, but it doesn't always play out like typical allergy.
And what I suspect happened, and I would love your professional kind of thinking on this, in many of these conditions, our body is receiving the signal. So both our, our small fiber nerves and which are sensory nerves, and our mast cells or our immune system cells are receiving information from our environment saying, you are not safe. There is danger. A lot of my patients end up in this state of hypervigilance. That totally makes sense. Like if your, if your cells are getting this input of like, you are not safe, you may die, avoid, evacuate, get out of this situation.
It only makes sense that then there would be other aspects of our physiology that, that just set us up for this, like being fearful of a lot of things. So I, I see a lot of that. I do see a fair bit of high achieving, “type A,” Not everyone, but a good chunk. Now, it would be really interesting as we're moving to a new electronic medical record system and thinking about some, like getting some symptom surveys and stuff, and that would be kind of an interesting little nugget of like even just information to learn about patients to better. Connect with them and support them. Right? Yeah. But the other piece of it that, that I know there is research on, is a trauma background is common with my chronically ill any chronic illness, not just allergic diseases. Yeah.
And I think what's so hard with our current system is, well, one, from a payment model standpoint there is a lot of incentive for our system to break , our problems or our body down into these super hyper like specialized areas.
So you don't only go to the ear, nose and throat doctor now, but there's actually a voice box doctor and there's an ear doctor and there's a sinus doctor and that even in such a small specialty, you know, there are these super specialists and part of it is so that you can get someone in and out of a visit quicker, and bill for it. And then you have mental health services which are completely separate. Oral health and dental health, which is considered totally separate, and none of that makes any sense.
And when you have systemic conditions like muscle disorders, autoimmune disorders, like Sjogren's, you need someone to be able to look at that whole picture because they do affect you from head to toe or they have the potential to. So that's where I really love in my current practice having so much more time to ask those questions and to, to connect those dots, because that's what's lacking kind of in most of our, our current health system set up.
I agree. I think so many people are searching for that. That for anyone is difficult to navigate, but particularly when you have something chronic that you're managing that's affecting your energy or you're in chronic pain or you're in a hyper vigilant state because you're in danger or, being so careful about diet or meds, then the extra energy to go see seven different doctors. It is not serving the patients. And of course it's systemic, I don't mean to blame any individual doctors, but yes, our system is not set up to support people holistically like you're saying.
And even now, there's a new tool that I am so hoping will take off as a startup, but the whole purpose of the startup is to help with the referral process. But one of the tools they're building as part of this is, is a way for docs that are working together to communicate with one another about a particular patient in a way that's HIPAA compliant. And that's elect, that's EMR, electronic Health Record agnostic. Because you know, I may be using one platform and the folks at another health system may be using Epic or what have you. And it's hard to get people on the same page where if you do have a cardiologist and a neurologist and the immunologist and. We all have our like strengths and weaknesses, but I might suggest a med that's maybe a bit more of like an in neurology's purview and I'd love to get there. And those conversations just aren't happening because there aren't easy ways to do it.
There's a lot of friction. And when there's friction, and you're in a system that is, has you pressed for time overbooked, it doesn't happen. Right. That is exciting. In the meantime, for patients who are navigating this, what do you recommend as someone who's lived it, how can they make that a little easier?
So, uh, one, when you call to make an appointment with whatever, you know, care team member, you're making it with helpful to ask the front desk or the, the scheduling person how long is my appointment scheduled for? And do they double book. Because that's going to give you a rough estimate of how much face time you might have with that clinician. And then I think it's helpful to do a little thought work before that visit. Okay. I'm going to see the neurologist, and this is the neurologist that specializes in movement disorders. What are the top questions that I need this specialist to answer? So that I can make the most of that 15 minute visit that I have because I'm not going to be able to like bring the binder that's like, you know, three inches thick.
I think having a one I ideally one page, two page summary of like the highlights. Here are the diagnoses that I have. Here are the diagnoses that we're very suspicious for my updated med list. And the other docs on your team like. And I know this is hard because not everyone obviously has gone to medical school, but the reality is that if you're living with a chronic illness, oftentimes you've had to get a lot of that education on your own.
I've joked that we need like a, a special degree for, for folks living with chronic illness and parents of kids with chronic illness. They need like a special like badge they earned designation.
And then, thinking of some of those questions ahead of time, many of it, like I, I include myself in this. I go into a stress response when I go see my docs. I have the nicest rheumatologist ever. She's like, sweet as can be. I shouldn't be stressed. I consider her a colleague and, and a bit of a friend. And yet I still find myself doing that fawn response where I'm like trying to like, like, oh yeah, everything's been fine. I'm great. Like mm-hmm. We want to be good patients, which doesn't serve me. No. So I have to think about ahead of time, “How has my stiffness been?” I've been to her several times, so I kind of know the drill, right for those follow-ups. But those are some, you know, helpful tips . You have to be strategic. And, and sometimes there may be folks on your team that frankly their bedside manner leaves a lot to be desired for whatever reason. And there may be some elements of gaslighting and other things. I think it's also helpful to know what are you hoping to get out of that visit and using the system. Sometimes you just, you have to think about your objective and sometimes you have to go with the flow a little bit to get to from point A to point B and understand the, the limits and the restrictions of how it's going to work in, in that system. Yeah.
And there are some times where you're like, uh, I really want to call out this person because frankly, they are being a jerk. But then, okay, but reality is I just need, this one piece from them and I may not actually have to stick with them. But let's just try to like, hold it in and not, you know, un unload all of that, like frustration and just get in, get what I need and get out.
Amanda Whitehouse, PhD
Yeah, so helpful to hear and I love too that you're touching on this piece about having all of that awareness, but then the self-awareness too. Like you said, I tend to fawn, and a lot of people do get nervous. White coat syndrome is a real thing even from a doctor sitting here telling you, yes, we all get nervous. So thank you for emphasizing that.
Kara Wada, MD
I think the other thing that's really hard, and I see this often and, and I, I understand how and why it happens. Often folks with chronic illness, especially a chronic illness that's hard to diagnose. Will play this game of like hot potato from specialist to specialist, right? Trying to find some answers. And they'll go through a whole battery of testing and a lot of box checking or unchecking or normal results.
And then often because this, the, the typical medical system or insurance based system doesn't, doesn't see them, doesn't hear them, doesn't believe them, or, you know, the perception certainly comes across as that, they often will turn down alternative paths. And this is where I also see harm, a lot of potential for harm that comes about there too. Where, you know, folks will come in and they're on lists of supplements that are twice as long as any med list they've ever been on. Or they've done a whole host of like testing that has no scientific validity.
And admittedly, I, I mean, I try to walk this line because frankly, if, if a patient is coming to me and they've already gotten that done and they have already kind of established working with that other healthcare person like didn't come out with the outcome that they had hoped, they already feel burned me calling that out, adds to the shame, right? I don't necessarily always call it out as much as maybe it's like the walking this line, right? You want people to understand the science and, um, what may or may not be helpful, but also I don't need to add to the shame cycle that happens too.
And like I said, I went down the path of superfood supplements and other things. I've gone astray and come back from things that aren't necessarily evidence-based medicine. But there is such a fine line of between what may be helpful for some also has potential to be harmful. Right, which is so complicated. And then of course the, then the emotional complexity comes in.
Amanda Whitehouse, PhD
I appreciate though that you're saying to navigate that. Not to just toss it out, like, I don't like the way this person interacts with me, or, I don't have a huge amount of trust in this doctor because of their bedside manner. It's like you said, it's kind of your own balancing act to do in terms of building that team and considering all the things that you're throwing into the pot are all important. Thank you for discussing it in such a nuanced way. I think it's really helpful.
Kara Wada, MD
Yeah, there's a lot of gray.
Amanda Whitehouse, PhD
So speaking of that, what's gray for me that I'm really looking forward to learning more about: You offer a treatment that, I did my research, there is evidence to support this, but even in allergy spaces that I'm in, I don't hear people talking about ILIT. Yeah. And so for me, that's a gray area. I really think my audience would love to hear you talk about what you're doing, how it works, and why.
Kara Wada, MD
Are we not hearing more conversation about it? No. Let's, let's spill the tea. So, um, immunotherapy is a way that we are able to treat an allergy. Immunotherapy is that we are able to desensitize the immune system to better tolerate things we're allergic to. And so traditionally that primarily has been for rhino conjunctivitis, so nose and eye symptoms. So, grass, trees, weeds, molds dust mites, kitty cats, dogs. In recent years we've also seen some increased research and availability of oral immunotherapy and some epi cutaneous, so some food allergy treatments that are kind of taking shape in a little bit different way.
But for typical allergies, asthma airway allergies, allergy shots actually in immunotherapy originated over a hundred years ago, and when they were initially studying the safety and how helpful it was, they also were studying the oral administration of allergens. They were doing kind of like an oral mucosal immunotherapy. There were some studies that would initially look at putting pollen in the conjunctiva, so the lining of the eye. That had a quite a bit of side effects as you can imagine, red, watery, puffy eyes. People didn't like that for a while.
They looked at administering it intranasally that made the allergy symptoms temporarily worse. So again, people didn't like that. But in the US the mainstay of allergy immunotherapy treatment has been shots. And interestingly in, a, a lot of areas like in, for instance, Italy in Japan, other parts of the world, sublingual or under the tongue. Immunotherapy has been the mainstay of treatment, and I, I'm not great at remembering statistics, but uh, I believe 80% of immunotherapy at some point in time in Italy was sublingual so under the tongue. So there are, and there have been these other modes of immunotherapy that have been explored and have been found to be effective to varying degrees.
In the US system, injections were the primary mode of treatment. I think in large part it was, it was kind of a tradition, but also insurance-based reimbursement has traditionally been really good for immunotherapy. You know, surgeons operate, they take out an appendix, a gallbladder. That's how they get paid. Allergists, allergy shots were their procedure that that reimbursed well and they're effective. And so it, it was a good business decision to offer that treatment to patient.
Interestingly, in the last five years or so, though, that is not necessarily the case in reimbursement as allergists. It's come down a lot and the cost of extract has gone up considerably. So I suspect that we will continue to see more allergists offer this intra lymphatic immunotherapy that we're going to talk about.
So I think a lot of it's been driven primarily by money and reimbursement. What we realized between allergy shots and then allergy treatment that went under the tongue, whether it was liquid drops or tablets, um, was that adherence for both of those is abysmal. It's something like 60% if that of patients will like actually stick with it.
For sublingual, you have to take the treatment daily, ideally for three to five years to see lasting benefit for allergy shots. You're typically going into the office most often weekly as you build up and once you get to what's called maintenance treatment, often you'll be able to space out towards once a month, but again, you need three to five years of treatment before you'll see lasting improvements. So when you stop, you continue to have benefit.
That's one of the great things about immunotherapy is this ongoing benefit after you stop treatment. And that's kind of why like the juice was kind of worth the squeeze. Some allergist scientists in Switzerland about, gosh, 25 or more years ago, were sitting around and saying, gosh, why aren't we using some of the science that we understand from vaccination with immunotherapy? And what we know about immunotherapy is when you inject allergen under the skin, some special immune system cells called androgen presenting cells or dendritic cells, they will capture a portion of that allergen. They will bring it back to the lymph node and it's in the lymph node where a bit of speed dating process occurs, and that's where the actual immune system retraining happens. It happens in the lymph node.
So Dr. Kundig in Switzerland and his colleagues were like, Ooh, what if we deliver a smaller amount of allergen directly to the lymph node? What might happen? What they hypothesized was that they would need fewer treatments. And so they initially studied that in animal models. And what they noticed too was there were less reactions, so less systemic reactions because in the lymph node, as long as you hit the lymph node, there are fewer allergy cells in the lymph node that create anaphylaxis.
So then they switched over to studying in humans and sure enough, it worked in humans. So what they found was, and you know this of course, over the last 25 years has been honed and, and improved upon, is that if you take a small amount of allergen that you're allergic to and you use an ultrasound, direct the needle to the core of the lymph node. You can deliver that on three occasions each four weeks apart. And you can see improvement typically by, if you start on day zero by 16 weeks after that initial treatment. Even when they looked at patients 19 years out from like that first human cohort that they compared intra lymphatic versus regular subcutaneous, they went back, they found 70% of the people who had gone through the initial trial and they said, Hey, how are you doing? And, uh, equal numbers between the regular immunotherapy and the intra lymphatic said, I'm doing great. Like, I'm still doing awesome. Thank you added that last bit, but but there seems to be great durability too. And so that is essentially kind of intra lymphatic immunotherapy.
If you're allergic to dust mite, kitty cat, timothy grass, you make a customized serum to you with those in it. We use a little point of care ultrasound, which actually can I have in my backpack here. It connects to an iPad. And, um, little of the cold gel we typically will inject in the inguinal area, so that's where the leg meets the body. In part because the lymph nodes are really close. They're just under the surface of the skin, so you don't have to go, you know, real far in. And the pain receptors are not quite as sensitive there as one of the other places you could think about doing is the neck. People get a little more squirrely on your neck. And frankly in your neck there's a, there are some more structures in that space that you wouldn't want to hit, so like nerves and blood vessels that you're like, oh, we don't, we don't want to bump into you. There's less to bump into down in that area.
We typically watch folks for about 30 minutes after their injection, and then they go about the rest of their day, and then they come back a month later. Then one month after that.
Amanda Whitehouse, PhD
So let me make sure I understand it correctly. You're saying the research is kind of comparing traditional allergy shots, which are really well established, both involve a needle. However, it sounds like the benefit is that by going directly into the lymph node, we're bypassing where some of those allergic cells on the way to the lymph node might be activated. Is that, does that mean?
Kara Wada, MD
Yeah, so it's more, it seems it's more efficient too. Okay. So you're, you can use a little less allergen and you only have to go three times as opposed to going weekly and then monthly for three to five years. When you look at adherence of someone like sticking through the entire course of treatment, you can imagine it's a heck of a lot easier for someone to get through three visits as compared to closer to a hundred visits over three to five years.
Interestingly the, the out-of-pocket costs, there's been some analyses done. Typically the out-of-pocket costs are a wash when you look at sublingual injection and intra lymphatic it's just, as you can imagine, intra lymphatic, you're doing it over eight weeks. So all that cost is upfront all at once, right? Essentially but you think about this time and energy and gas savings, all of that. And then it's like, oh, well, the math starts mathing a little more.
Amanda Whitehouse, PhD
How about insurance then? Is that something that's starting to be covered?
Kara Wada, MD
No, it is not covered by insurance at this point in time. The hope is that perhaps at some point, but to be honest with how insurance marketplace has evolved over the last five to 10 years, it is pretty rare to see insurance opt to pay for. Something that they don't necessarily have to pay for. They're not adding things to what they're paying. They're trying to cut what they're paying for.
And what's sad, you know, one of the things I, I remember distinctly, so Dr. Kundig, he's the father of intra lymphatic immunotherapy, he came to Nationwide Children's Hospital to give an academic talk right as I was in the transition point from residency to fellowship. And I wasn't totally burnt out yet, and I wasn't totally cynical yet. Not that I'm totally cynical, but he said that one of the reasons this hasn't caught on is there's no financial incentive for anyone to pursue the research in like huge ways, especially in the US because the companies that make the serum, they would sell less serum because you just use less of the allergen. They have no interest in funding that.
The ultrasound companies, they sell a whole lot more of those ultrasounds to intensive care docs, cardiologists, vascular surgeons, you know, hospitals. We're not even a blip on their radar. And so really a lot of the research has been centered in Europe where there are healthcare systems that really are looking for solutions that on a population level are more cost effective. And so they're the ones who have really invested the time, energy, and money in, in researching this.
There's been some more ongoing research in venom immunotherapy, so folks with bee sting allergies in particular where immunotherapy is lifesaving. And so that there they've done some cost analyses, especially out of again, a lot of this has been out of Switzerland. But to say that from their, their health system, which is government funded, that they save money by doing this option as compared to the traditional in the arm shots. I think what's exciting is there, there are some, some whispers and like I, I get asked a lot is this, is this available for foods? It's not available for foods yet, but that is on the radar of folks that are really interested in this area of immune system research and so more to come, I think in the coming years.
Amanda Whitehouse, PhD
Is there any data on that yet? Are they researching it?
Kara Wada, MD
Not in humans. Not to this point.
And part of it, many years ago, there was an immunotherapy trial for peanut allergy that was shot based. And unfortunately, someone in the placebo group received a peanut containing shot and passed away. And so that really shut down any type of peanut immunotherapy for a very long time, understandably so. And so that's why kind of some of these other routes have been researched just because there are lower rates of life threatening certainly still is the risk but it's less so than what they were doing back in… I think it was the late nineties.
Amanda Whitehouse, PhD
So could you tell us about that? In your practice and with your clients, what you are seeing as far as the benefits, obviously, and then what the risks, if there are some side effects or what the chance of reactivity is in your experience?
Kara Wada, MD
Yeah, so there still is a risk for systemic reaction so every patient is bringing their epinephrine device with them, whether it's the injectors or the nasal spray. And, and we talk through that risk versus benefit, though it does appear that the risks are lower than what you would have a shot.
Shots, we estimate somewhere around one in a hundred folks will have a systemic reaction. And then in ILIT is thought to maybe be around one in a thousand if you have someone who's really adept at doing it.
And then, what's really cool is there are some folks, especially I think those folks who've maybe had immunotherapy a little bit in the past, they sail through it. Occasionally I'll have someone who, you know, they've never tried immunotherapy and so it’s their body's first time of seeing that. And so we'll sometimes see a little bit of swelling, itching at the injection site kind of for that the day or so after their injection.
Most folks, they'll feel that little pinch as the needle goes in, and then I have to adjust kind of to make sure the needle's in the exact space and that I want it to be in and use the ultrasound just to check kind of from both directions that we're in the right spot before we actually push the allergen in. But typically, you know, they say, oh, that was it. Like, that's often what I'll hear from folks. Like, oh, I was, I was so nervous over nothing. So that's often what I'll hear after that first injection.
And then they usually will come in for that second or third visit, like, oh yeah, no big deal we got this. And then usually, it occasionally after that second visit between the second and third visit, if someone's living with a cat or a dog or it's the middle of pollen season and we can sometimes start to say like, Hey, you know, how have your symptoms been doing? And it occasionally we'll have someone say, I don't think they've been so bad.
But usually it's after that third injection where we are kind of seeing really those symptoms dial down. A couple of my patients, it is timed out where we finished up their treatment kind of right as allergy season's ending. So it may be next spring before we really see kind of where the proof is in the pudding. But it's exciting to see folks say, oh gosh, I went over to my cousin's house and they have cats and like, I didn't die like normally my asthma is so bad, I did great. I didn't need my inhaler.
I have a, a little cohort of patients that are gentlemen who are getting ready to retire and they love golfing and like, they're like, I have had to show up to the office. I now just want to show up at the golf course. And so those are the other folks that are like, so excited about this. I had someone flying out from uh, DC area to Columbus to get treatment for their allergies for that very reason. So he, he is all set now for his retirement this spring. So first things first, I know. Yeah.
And then I see a lot of like high school, college age athletes who, you know, are playing soccer, playing baseball, you know, these sports that they love. But are really being impacted by, especially like baseballs right in the middle of grass and tree season or soccer, which always happens to be in both grass and ragweed season.
And typically we'll treat folks, usually adult size. So, you know, if it's a 12-year-old that's kind of already gone through that big growth spurt, then usually as long as everyone's on board and just making sure the kiddo feels comfortable with what we're doing too. Each kiddo's different. I have three and like I could say for certain that my 10 year old's going to react a whole lot different than my 7-year-old with, with the idea of a needle coming at her.
Amanda Whitehouse, PhD
But that's the whole exciting thing, the reason I'm doing this season of the podcast. There, there are options. We didn't used to have any options. And now there are so many things.
Kara Wada, MD
Yeah. Incredible. It's so individualized, depending on each person.
Amanda Whitehouse, PhD
But this is not an option for younger kids?
Kara Wada, MD
Right. Um, my colleague who trained me, I think she said the youngest, she had done a six or seven year old. Dr. Amber Patterson is my mentor on this. She is like a world expert and really kind of the go-to person in North America for, we'll call it ILIT immunotherapy or intra lymphatic immunotherapy. She's a pediatrician by training and she, she did the first clinical trial in teenagers with grass allergy and found it to be safe and effective through, through that trial.
But I think in her practice she had said six or seven was about who she's seen and both from kind of body size, but also just the maturity level of the kiddo, too.
Amanda Whitehouse, PhD
This is so helpful and exciting to hear. Obviously, I want to have you share with everybody how they can find you, but in general, if people are looking for a doctor and, and maybe you're not an option geographically or whatever it may be, is there a directory? The Auni learning network, AUNI, has a directory of, um, docs that they've trained. We all come together and bring our data together. Those of us that are part of the network are really committed to being up to date on the latest training, staying up to date on the latest research. When we had our annual meeting this last year, we brought in virtually the researchers from Switzerland to give us all the updates on what's going on. So that's a really great resource.
I know they have folks at Washington University and St. Louis, my colleagues at Ohio State offer it. So it's not just private practices, but academic institutions that are really getting on board too.
Amanda Whitehouse, PhD
Very exciting. And so for people who are loving listening to you talk and your approach, please tell them where they can find you. And obviously you have, you have your older podcast. You have a newer podcast, is that correct? So not just if you're interested in treatment, but, but I think you have a lot to share with people!
Kara Wada, MD
So the home base for everything is my website, drkarawada.com. My practice is the Immune Confident Institute, and we're currently licensed in 16 states, physically located in the Columbus, Ohio area. It's myself, a nurse practitioner I've worked with for years has come on board and, and we hope to be growing our team as well. And we see kids and adults for a whole range of allergic disease and overlap with autoimmune conditions.
On YouTube, it's at Dr. Kara is the channel there, and we have both kind of my solo episodes all located there. But also you'll see link to a project I have going with two of my best allergist girlfriends, allergy actually, where we'll have some more allergy specific content. Talk a little bit more about ILIT and food allergy treatment from the perspective of being moms and friends too.
And on social, on Instagram, I'm probably most active. It's immune confident MD.
Amanda Whitehouse, PhD
Perfect. I will make sure all the links are handy for everyone so that they can find you and learn. We've got a lot of topics thrown in the bucket here that you share about. So I think a lot of people that will really appreciate following you and finding all of the great information you're putting out. Thank you so much for being here on the show.
Kara Wada, MD
Thank you. And one other thing: we have a freebie up on the website still. It's how to get ready for an appointment if you're meeting with an allergist immunologist. We just want a resource to kind of put all that information on one place. It's a PDF, so I don't get any of that information. It's totally just for the patient to use and to think about things with a little bit of what the doctor will be thinking about. It's a really great free resource that's over there too.
Amanda Whitehouse, PhD
That sounds wonderful. Thank you. I'll make sure I find that and share for everybody . Well thank you so much. It's great to meet you
Kara Wada, MD
You too. Take care. You too.
Amanda Whitehouse, PhD
Thank you so much to Dr. Wada for joining us and for all of you for listening. Here are three action steps that you can take to follow up on what you learned today.
First, follow Dr. Wada, drkarawada.com, On YouTube at @drkarawada On Instagram @ImmuneConfidentMD. I will put the links in the show notes. There are so many great resources that you won't want to miss that she has created, including her resource on how to get ready for an appointment.
Number two, if you're curious about intra lymphatic immunotherapy, explore the provider options listed on Auni Allergy's directory to see whether ILIT is available in your region and their website, which will also be linked in the show notes is auniallergy.com.
And third, if you are navigating immunotherapy decisions and feeling the emotional weight of these choices, my workbook From Fear to Freedom: A Workbook for Navigating Allergy Immunotherapy walks you through the psychological, relational, practical considerations that often get overlooked. You can find it anywhere you buy your books, but I would encourage you to purchase through bookshop.org where you will support independent bookstores.
Thank you so much for continuing to listen to support the show for sharing, liking, leaving ratings and reviews that are helping the show to continue to grow and reach more people who need this support. I'll talk to you again next week.
The content of this podcast is for informational and educational purposes only, and is not a substitute for professional medical or mental health advice, diagnosis, or treatment. If you have any questions about your own medical experience or mental health needs, please consult a professional. I'm Dr. Amanda Whitehouse. Thanks for joining me. And until we chat again, remember don't feed the fear.