Dr. Dempsey shares her experience in both diagnosing and treating people with MCAS. She always looks for POTS and orthostatic symptoms during diagnosis, as these are often comorbid disorders. Antihistamines and other major medications commonly used to treat MCAS are also discussed.

You can read the transcript for this episode here: https://tinyurl.com/potscast122

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[00:00:00] Jill Brook: Hello, mast cell patients and lovely people who care about mast cell patients. I’m Jill Brook, and this is our second episode of Mast Cell Matters, where we go deep on all things related to mast cell activation syndrome or MCAS. I am thrilled to be joined by one of the all time smartest, most experienced, most accomplished, and most knowledgeable mast cell physicians of all time. Dr. Tania Dempsey is a Johns Hopkins trained physician specializing in complex chronic disorders and immune dysregulation. Her medical clinic in Purchase, New York attracts complex patients from all over the world. Dr. Dempsey has published numerous peer review medical articles about MCAS. She presents all over the world educating her peers, and she does an amazing job staying abreast of new findings, which I know because every time she speaks, I learn something new. Dr. Dempsey, thank you so much for joining us today.

[00:01:00] Dr. Tania Dempsey: Oh, thank you for having me.

[00:01:02] Jill Brook: So last time we discussed the basics of mast cells and mast cell activation syndrome, and today we’re going to discuss diagnosing and treating MCAS. And one big point from last time was how mast cell activation syndrome can have so many different possible symptoms because mast cells are all over the body and there are so many different chemical mediators that can come spilling out of them. So that means different people can have very different presentations. So it’s not like diagnosing a sprained ankle where to look at the ankle, right? Given that the symptoms can vary so much, what makes you suspect that a patient might have MCAS?

[00:01:45] Dr. Tania Dempsey: That’s a great question. Because the way I think of it is that that we really have three themes that we typically see with an MCAS, and I’ll go over those again. And so if patients have some aspect of those, one or more of those themes that supports the diagnosis. In addition this is a multisystemic complex condition. It’s multisystemic, and what that means is that it has to involve multiple systems in the body. So, let’s just say you have allergies, but you don’t have any GI symptoms, maybe you have respiratory symptoms. Maybe you don’t have urinary symptoms and you don’t have neurologic symptoms. You really only have it in the respiratory tract, let’s say. That’s unlikely to be mast cell activation syndrome. So really you need two or more systems involved and generally around these three themes. And it can be plus minus allergic phenomena. So plus minus, meaning some people will have allergic phenomena and some people will not. There will be no allergic symptoms whatsoever. Inflammatory is a second theme, and I would say that’s the predominant thing that we see across the board is Inflammation Anywhere. And then we’ll call it dystrophism or Abnormal Growth and Development. Things like the growth of tumor, cysts, nodules. It can affect even the growth of any cell. It can affect bone health and the integrity of bones. It can do a lot of things. So you have these three themes. So if I have a patient and they have some flavor of one or more of those themes and they have at least two systems involved with symptoms and honestly, very often people don’t even realize actually all the things. I think some patients are trained, unfortunately by the medical system to not complain or not to give too much information. So sometimes I have patients who come in and they’ll focus on that one symptom that they’re really worried about and they know they have other symptoms. They’re afraid to say it. Right. And then I start running through the whole list and finally I’m validating that, yeah, we need to know all this because how are we going to treat it if we don’t know? And then we realize actually they absolutely have a multi-systemic problem. It seemed like they really only had one problem. Just because of how, patients are dealt with in the medical world. Very, very unfortunate situation.

[00:04:21] Jill Brook: Well, absolutely. So this sounds like it’s almost a differential diagnosis to hypochondria, right? Because some of us are used to worrying that if we say we have too many different problems, the doctor will think we’re hypochondriacs. But you’re saying that you actually look for a lot of problems.

[00:04:36] Dr. Tania Dempsey: Yes, exactly. I know that there’s no hypochondria. Look, maybe that is a true diagnosis in a very small number of people, but by far, the vast majority of patients have things really happening to them. A lot of these things are unexplainable by other doctors. They can wax, they can wane, they can move. That’s why it seems like patients are making it up or anxious or something, right? Because they’ll go in for one thing, but then that symptom maybe fades a little bit and now it’s another symptom, another part of the body. And again, unless a doctor’s trained to understand how to look and understand how all these things are connected, they just think yeah. Anxious, unfortunate patient. But it’s really, patients are really suffering and this is why I do what I do and why I educate so much because I want to get this information out there. I’m so passionate about Getting the information out there for patients because patients have to be advocates more than ever for themselves and their family members. And I hope that there will be practitioners, providers out there, doctors, nurses physicians assistants, whoever’s out there maybe they’ll even listen and kind of start to say, wait a second. I have patients like that. I never thought of it that way.

[00:05:50] Jill Brook: can I ask you about two particular symptoms and whether they can be mast cell related? The first one is POTS, because we have a lot of listeners who have POTS and so like does that count as a cardiovascular symptom? And then my second question is about something like anxiety. Can that be a mast cell symptom?

[00:06:08] Dr. Tania Dempsey: So look, the way I think about POTS is that there are probably different forms of it. We’ll say, people manifest POTS in different ways and there may be different root causes. But generally speaking, mast cells are involved in all those processes actually. If we think about it as an autoimmune process, some people think about POTS autoimmune. I would argue that it may not be autoimmune. Per se, but may actually be mast cells driving what looks like autoimmunity. In neurogenic POTS, the nerves are involved. I mean, the nerves are involved everywhere, but it’s nerve driven. mast cells are around all the nerves and are sending signals, so I absolutely look at POTS as a mast cell symptom. Now I’m sure there are patients out there who really just have POTS and don’t have other symptoms involving other organ systems or tissue. But the vast majority of POTS patients that I’ve encountered in my career, again, I’m a little bit skewed because I do have a interest in MCAS, right? So those patients are definitely going to be coming to me. There’s definitely an overlap. that the majority of the POTS patients I see have MCAS and mast cell Targeted therapy for many of them will cause a dramatic improvement in their POTS symptoms. Sometimes sure they still need POTS treatment, but sometimes dealing with the mast cells can improve it. So yes, that’s a very, very important point. and POTS is one end of the spectrum of dysautonomia, right? So autonomic dysfunction can manifest in other ways as well, like gastroparesis for instance, so that’s like a slowing of the digestion in the stomach. The colon can have a motility issue. It, we call it colonic inertia. Mast cells are absolutely involved in those things too. And again, treatment varies, but certainly addressing mast cells is going to be helpful on some level. The anxiety symptom is a very common symptom of MCAS. , it’s probably one of the most common that I see. And there’s no question that we have lots of mast cells in our brain and in our nervous system. And as I said in the last podcast, mast cells are everywhere where they need to be to protect us from the environment so they’re in the skin and in our respiratory tract and all that. But our nervous system has to be protected from the environment for a lot of reasons. And maybe our nervous system isn’t as tightly encompassed as we used to think it was. We have something called the blood brain barrier. It’s supposed to sort of block things from just floating into the brain and maybe that barrier is a little weaker than we thought. This is what we believe, that it’s probably leaking in some people. And the mast cells have to be right there. They have to be right there. On the brain side of the blood-brain barrier, ready to protect. And so they surround every nerve. They interact with every cell in the brain. We have other cells in the brain that help protect us. They’re also immune cells. They’re called Glial cells. There are astrocytes and microglia and mast cells can talk to them. They also release various mediators and chemicals themselves, and they talk to mast cells. And so the way I think about it is if you have dysfunctional mast cells, there’s like a short circuiting that can happen. The the signaling. To the nerves, to the astrocytes, to the microglia, kind of get overworked. Maybe there’s too much signaling that’s going to ultimately lead to inflammation. And so inflammation in the brain can manifest in a lot of different ways. Inflammation can lead to changes a neurotransmitters. We can say it that way, but also just in general, if there’s inflammation in the brain, the normal processes are going to be interrupted. So anxiety, the way I think about it, especially in MCAS patients, is totally uncontrollable. You can’t necessarily think it’s a mind over matter. You can’t stop it. It’s a physiological response to mast cells degranulating and reacting. And it’s quite, quite profound and pronounced when it happens and can be debilitating. And sometimes needs to be treated outright as anxiety, but again, targeting the mast cells can actually help reduce some of these episodes and reduce anxiety overall. If you find the right protocol.

[00:10:32] Jill Brook: That’s so exciting and I think it’s so important for people to realize that even some of those symptoms can be mast cells. okay, so once you have someone in front of you and you are starting to suspect MCAS, what else do you look for or do?

[00:10:48] Dr. Tania Dempsey: So again, I do get a very, very thorough history, starting from the top of the head all the way down the bottom to the feet, right? So I’m looking at everything, trying to understand other symptoms that may be happening, other things that may be going awry. So the history is number one. And then I am going to do a very thorough exam, and hopefully I have this patient in person. I do some telemedicine, but ultimately the patients have to come in in person because there’s just nothing like doing an exam to really help support the diagnosis or even rule it out. I do a lot of things during the exam, but these are the things that would help me identify patients with MCAS. So I’ll scratch their back if they get a red line under the scratch. I’m not really scratching, right? I’m just like kind of rubbing it. I’m like, just so people know, it’s a gentle with a fingernail or a little stick. We just make a line and if it blows up and turns red, it’s like a hive essentially. We call it dermatographism. And that’s a classic for mast cell issues because especially mast cells in the skin get triggered by that movement, and they come out and they release a histamine and you get this wheel, basically. So that’s a good test to do. I certainly have mast cell patients who don’t have a pronounced effect from this. They might have a light line. I have some patients that’s really dark red almost immediately. But again, if the mast cells in the skin are not their primary issue, we might not see it. Important to look for. I always do orthostatic testing. So I’ll do often I’ll do lying down, sitting up, standing, blood pressure and heart rate because I do know that since POTS or postural orthostatic tachycardia syndrome can be associated. I’m always looking for it. Even if the patients don’t necessarily tell me that part of the history, they might not even realize it to be honest. I have patients who have very subtle symptoms and then when we test them, they’re quite orthostatic. But the manifestations are just a little bit different for them. They might just have brain fog. They might not feel dizzy, they might not feel their heart rate. But they have brain fog and they don’t even realize that the brain fog is positional in some ways. That when they lie down, they’re actually better. And when they are sitting at their desk, all day is worse and standing is going to be worse. So I always do that. Sometimes I’ll do a Nassau Lean test, which can give you some sort of flavor of orthostatic issues. And it’s patient leans against the wall for 10 minutes and we do a series of measurements. So those are the two ways that we typically do it. So I’m always looking at their autonomic nervous system in some way. And and then I’m looking for other things that I sometimes see in mast cell patients. Sometimes I see like edema or puffiness or swelling. Sometimes it’s in their legs or their hands or their fingers or joint deformities of any kind that may not be mast cell, but maybe autoimmune or something else. I’m always keeping the differential open. You know, I never want to put all my eggs in one basket so I don’t go into the exam thinking oh, this is MCAS. And that’s it. I’m thinking, yeah, there’s a flavor of MCAS, but let’s just make sure we don’t miss anything else. And so I’m always looking at all the other pieces to rule out other things. And then once I’ve done the exam, then I’m, going to do testing.

[00:14:01] Jill Brook: Okay. So what does the testing look like?

[00:14:05] Dr. Tania Dempsey: There are three main ways you can get testing done for MCAS and most often you need a combination of them. So they’re blood tests that you can do, blood work that looks at mediators or things. A broad generalization, but what I’ll say is that we’re talking about mast cell activation syndrome, and we’re not talking about mastocytosis which is the proliferative problem? It’s really a cancer of the mast cell. I want to be clear because the workup would be different. But I’m doing blood work to look for mediators or those chemicals that mast cells release, I’m going to look for them in the blood. I’m going to look for other things in the blood as well. I’m going to look at their other immune markers. I’m going to look at urine and I usually do both of these random urine collection and a 24 hour urine collection. Again, looking for those mediators. And actually the metabolites of the mediators. So how the mediators are being processed by the kidneys and then are being released into the urine in different forms. And then we’re looking to see if they’re present. The presence of those mediators or those blood markers supports the diagnosis of activation of mast cells. If they’re abnormally activated, they’re releasing these mediators on a regular basis. Hopefully we’ll find it that way and make the diagnosis. According to our consensus two criteria that we’ve published on, we like to see two markers positive to support the diagnosis. So one alone wouldn’t be enough. You really need two, and you really need the clinical history and the physical exam that supports the diagnosis. And so lastly what we’ll do with some patients especially if they’ve already had some kind of endoscopy or colonoscopy, a lot of our patients do have GI symptoms and they’ve seen GI doctors and they’ve been scoped. If they’re biopsies are available we can have the pathologist stain those biopsies. With a special stain called the CD 117 stain, and that will allow the pathologist to look and see how many mast cells they see and an increased number of mast cells in the GI tract. Particularly if we go over 20 mast cells per high power field is supportive according to the literature of the diagnosis of mast cell activation syndrome. And the mast cells on biopsy look very different if you have just mast cell activation syndrome compared to, let’s say, mastocytosis, where the mast cells do look different. And so those are again, the three main ways we test for mast cell activation syndrome. And I have to tell you, most of the time the problem is not the patient’s fault because the patients are so good about keeping everything cold and bringing it to the lab cold but then the lab tech takes the jug out and puts it on the counter. I’ve had patients tell me this, they’ve seen it with their own eyes that that goes on the counter and it sits there until they’re ready to process it. And that’s it. It comes to room temperature and those mediators are gone. It is a sample that has to be taken care of very, properly. And, that’s why we have a little lab in our office. It’s not a lab. We don’t do the testing for these mediators, but we have a refrigerated centrifuge. We have the ability, we work with a lab that can do these tests and we are working with them to make sure that the minute it leaves our office the sample is processed and kept cold and processed properly along the way. So it takes a lot of effort to make sure that that happens.

[00:17:33] Jill Brook: Excellent. And are these labs hard to come by? Like could any physician easily order these tests or do you have to kind of be in the know about who can do them and how to order them?

[00:17:45] Dr. Tania Dempsey: Doctors, anybody could really order them. They have to find the right lab to send it to, and some labs have some mediators that they’re able to do in the urine and some don’t. And we have an issue in New York where we can’t do certain mediators in New York, and we can do them in other states, but look, the way I think about it is if there’s a doctor who’s out there who’s treating a patient, who’s listening, and that doctor doesn’t know what to do, but wants to help. You know, I always make myself available. My colleague here, Dr. Larry Afrin, makes himself available. If the doctors want guidance on how to order these tests, we’re always happy to help. So, theoretically, it can be done anywhere in the country. Overseas. Some of my colleagues in Canada are really, really struggling with being able to, to test some of mediators.

[00:18:32] Jill Brook: Okay, great. And then you had mentioned briefly a consensus two criteria. For diagnosis and just as a teaser to our audience, next month we’re going to have Dr. Lawrence Afrin here to talk about his approach to MCAS and what that is, the two approach. So is there anything more to say about diagnosis before we move on to treatment?

[00:18:56] Dr. Tania Dempsey: We have a lot we want to cover today, so, right into treatment.

[00:18:59] Jill Brook: Perfect. Okay, so you have just diagnosed someone with mast cell activation syndrome. What next?

[00:19:06] Dr. Tania Dempsey: So step one is eliminating triggers. So we know the mast cells are reactive to certain things in patients who have MCAS. Right? And again, to be clear, everyone has mast cells, but their mast cells are usually dormant in a sense until there’s a big trigger, like a infection of some kind. But if you have mast cell activation syndrome. Your mast cells are more activated, more likely to be activated with less of a exposure to sort of keep them activation state. So what might be driving of this activation. It they’re living in a place, let’s say that. Certain building materials. it’s off gassing or they have a mattress that’s off gassing. So there’s just certain things in the environment that they have to start to look at to see whether it’s possible that that’s one of their triggers. You know, maybe dust is a trigger in their home and they realize, I think they need to vacuum more often and. You know, so it could be things like that. It could be things that they’re taking, you know, there could be other medications they’ve been taking or even supplements they’re taking that might have that are serving as a mast cell trigger for them. So they have to start to identify, why they may be reacting. Maybe they know that they react to certain medications or supplements and not others. So trying to figure out why the case can be, maybe there are foods that they’re eating that are a trigger for them. Maybe there really is an infection, a chronic infection of some kind continuing to cause them to continually degranulate. Some of it can be done by the patient. They read a lot. Trying to figure out how to get themselves better. Sometimes it’s not so clear. It’s not something in the environment, it’s something in the internal environment of the body that is driving this. And stress can be a big, big factor. Anyway, step one is always, again, we have to eliminate what the mast cells are reacting to. And those lines we start implementing be medication and it can be nutraceuticals. Can help block some of the mediators, stabilize the mast cells. And there are lots and lots of different options in that. And we can go through some of that too. One of the big surprises to me that has really turned into an amazing tool for so many of my patients is limbic retraining.

[00:21:26] Jill Brook: Hmm.

[00:21:26] Dr. Tania Dempsey: and programs out there. There’s a Gupta program and there’s D N R S, which is Retraining System. And these programs are designed to help sort of reset. part of the brain that is involved in emotions. there’s a link between that limbic system cell activation and the nervous system as a whole in sort of learning how to deal with some of this and, and learning. These tools sort of shift, nervous system to a better place can have dramatic effects at stabilizing mast cells. So some things we do you have to take something in some form, Orally, or IV. There are different ways to do it. So sometimes it’s and then there are these other things that have to be taken into account as well. I’ve had patients leave their home that they realize ,is moldy and mast cells, without anything else, without medication, go back into a better state. There’s lots to be done and it really does need to be done, under the guidance of a practitioner who understands this because it’s a lot of trial and error. Especially when you’re starting medications. You know, the First thing I might try is an antihistamine. It’s fairly simple. It’s over the counter. And even for patients who I haven’t proven that they have MCAS yet, but they to they want to start doing something. There are lots of them that can be tried over the counter. There’s some that are prescription. Sometimes we have to compound them to eliminate some of the excipients that come with them. Give you an example, Claritin is loratadine. you can get loratadine generic, you can get Claritin brand, you can get Claritin in gel caps. You can get it in ready tabs that dissolve. They have all these different formulations and they all have different types of ingredients. And had patients do better with one type of ingredient versus another. I have a patient who couldn’t tolerate any Claritin, but like there was a particular pharmacy brand.

[00:23:16] Jill Brook: Can I ask a question about that? So is it safe to encourage patients who suspect they have MCAS, but who are on one of these very long wait lists to see an MCAS specialist? Is it okay for them to just try some over-the-counter antihistamines so that by the first time they see an MCAS specialist, they can let whether it helps or not? Is that a good clue for you, or is that wise?

[00:23:37] Dr. Tania Dempsey: So I’ll be honest, there was a point in my career probably would’ve been uncomfortable saying that. I certainly don’t want to give advice here. I can’t give advice. I can’t tell people what to do, but you’re absolutely right. It is very difficult to get the care that they need. Some patients are in areas of the country where there are no mCAS providers and nobody who’s even in learning. And so, what do these patients do? So yes, get on a try to see a doctor try to identify your triggers. Try to look and see if there’s something obvious that you might be able to deal with. The reason they’re over the counter is because, you know, theoretically they’re safe at the dosages that are on the bottles. Under my guidance, I might, use higher dosages because I know about the drug and I’m following and monitoring patients, so I would never recommend that. But following the label and trying antihistamine I think it’s not necessarily a bad idea, especially if it gives more information. Now, let’s say a patient has tried, they’re waiting for an appointment, they just want to know they’ve tried some antihistamines and it hasn’t done anything for them. Maybe they’re not reacting negatively, they just don’t notice anything, then I would say, sometimes the patients get frustrated and they think, well, not have MCAS. And you know, what I say is that actually It’s supportive if you react positively to it. It doesn’t mean you don’t have it if it’s negative and.

[00:25:01] Jill Brook: Ah.

[00:25:02] Dr. Tania Dempsey: The reason that is, is because maybe the mediators that their mast cell is making is not histamine or histamine is not the issue. So those drugs are blocking histamine, but maybe they have a problem with too much prostaglandin D two or leukotriene or some other mediator. And mast cell targeted therapy. So I just wanna make that clear that I also don’t want people to get frustrated if they try something and they don’t get relief.

[00:25:30] Jill Brook: and what’s the statistic you have mentioned that there’s how many different potential mediators and how many of them do we know how to block?

[00:25:38] Dr. Tania Dempsey: So we have over a thousand mediators as of a few months ago, but I wouldn’t be surprised if there were a few more that were added to that list. And yeah, we have a handful that we can block.

[00:25:51] Jill Brook: So it’s almost like you’re lucky if histamine, happens to be your problem. That’s very, very lucky.

[00:25:58] Dr. Tania Dempsey: Correct. Yeah, that’s a good way of looking at it because are over the counter. but in a lot of my patients, it’s a, it’s a mix. They can have histamine, but maybe they take Claritin. I’m going to give an example, and they see some effect, let’s say maybe they’re having headaches, but maybe they’re also having GI symptoms and maybe they also have anxiety. They take Claritin and let’s say that their headaches are better ,but not their anxiety GI issues. And what we understand is that mast cells can be different and release different mediators in different parts of the body and can react differently at different part times of the day or times of the year. and so we can use in mast cell targeted therapy. works that way. But sometimes it really will help what’s gonna work for those other areas.

[00:26:47] Jill Brook: Got it. So if I were to name a couple of other MCAS drugs, do you mind giving us just like the one minute explanation they are? Okay. So sometimes we hear about sodium cromolyn what’s that?

[00:27:00] Dr. Tania Dempsey: Okay, so cromolyn It’s a very interesting compound. It’s available commercially as a nasal spray. And that, that I believe is over the counter Okay. So it’s a liquid, and there are different ways that I introduce patients to this, but generally speaking, into the GI tract. We know that it actually calms down mast cells for some patients. And in doing that, it’s those mast cells are maybe sending a parts of the body and we’re seeing that even though it’s so type of drug that doesn’t really get absorbed in the body, it’s having effects elsewhere in the body. There are other formulations. What we’ve used at times, and you know, there are ways to do it as an eye drop. There are little tricks that we use, but a nice tool. It doesn’t work for everybody. I’ve seen it be amazing. I’ve seen it be horrible and I’ve seen it doesn’t do anything. What I will say is that cromolyn is known to cause a little uptick in the release of mediators initially going on the drug. So I always take the first week or two. I tell patients when they’re starting it, we’ve gotta build up slowly to kind of get over that and that actually really helps a lot. So I’ll sometimes have them as a little trick. I’ll have them take a vial and it’s a hundred milligrams in this five ml vial, there’s no lines on it to break it down. So they put the full vial, let’s say in eight ounces of water, and I might have them drink maybe an ounce of it, and maybe the next day they do another ounce, or maybe the next day they do two ounces. And so they build up very slowly. And this is a drug that can be with GI symptoms food sensitivities. It can be taken up to four times a day. And it’s, again, it’s a great tool, but patients sometimes react negatively to it, and that could be, but it’s in plastic. So I do see that. I have patients who are really sensitive to plastics of various kinds, and sometimes we have to change different brands of chromin because different manufacturers use different plastics, which is really incredible. You would never think that, but I see this again and again. I have patients who that we can compound. So that was not a minute, that was longer than a minute.

[00:29:10] Jill Brook: Yeah. No, that’s great. And I won’t ask you about all of the potential treatments. Obviously there’s a lot, but if I could ask you about a couple more that we hear about pretty often. Another one is montelukast, I think brand name Singulair. How does that work with mast cell activation syndrome?

[00:29:27] Dr. Tania Dempsey: So that’s a leukotriene inhibitor. It was studied in asthma. We know that leukotrienes are involved in the sort of asthmatic process, you don’t have to have asthma. MCAS, you could, but you don’t have to have it. So Singulair or montoleukast and there are a couple of drugs related to it that have effects on leukotrienes. One of them is called Accolate can be very, very helpful. The problem with montelukast is that there is a black box warning on it, and I do want to mention that, basically, psychiatric issues potentially from depression from Singulair. I will say that I have seen that very rarely in my career. I’ve used Singulair for even longer than I’ve been treating MCAS and asthma things. For 20 plus years I’ve seen that a handful of times. and you stop it, but it’s something to note and something to be aware of but it can be effective. And if leukotrienes are the issue, and this is why sometimes it’s important to test because if you find high leukotrienes, you know right away that that’s a very good place to start.

[00:30:28] Jill Brook: So the one I’m hearing about lately from the COVID long haulers kind of maybe struggled and not been helped by a lot of other things, is the one that has to be actually injected. What can you tell us about that drug and MCAS?

[00:30:42] Dr. Tania Dempsey: Yeah, Xolair is a monoclonal antibody, and it’s a anti IgE. The drug was really designed for severe allergy. And I think it’s FDA approved for asthma and chronic urticaria which are hives. So this binds to the mast cell directly actually. Xolair is a type of antibody that binds to these receptors on the mast cell, sort of the ultimate mast cell stabilizer. What we’re finding is that long COVID might be mast cell driven, might be an MCAS driven phenomena. And so a lot of long haulers are looking at some for treatment. And what’s interesting about Xolair is that while it can help the allergic phenomena, chronic fatigue. I’ve had patients use it for brain fog. If we think that the mast cells are the driver of those symptoms and we calm them down, we can see an effect. The problem is getting it approved. It is a very expensive drug, and again, the FDA has two indications, and so, to insurance companies has one of these it’s often difficult, but there are a lot of our patients do have hives. And the second issue is that it is one of these drugs that stays in the system for months. So if you’re an unfortunate person who reacts to it, it takes a very long time. Three months or more to get it out of the system. So it is an injection, by the way, and it has to be injected monthly or every few weeks, or there are different schedules, but yeah, and so we really try to screen patients and make patients that you know, have a lower likelihood of having an adverse reaction. Certainly somebody who’s really anaphylactic or anaphylactoid, someone who’s having those episodes, some cell patients have, giving them a drug like this where it’s going to be in their system for a long time, they’re so highly reactive, may not be the best choice. the other drug they’re looking at is low-dose Naltrexone, which is another drug that we use a lot in MCAS.

[00:32:45] Jill Brook: Yeah, so it’s encouraging to know that there’s so many different drugs that work in so many different ways, and so chances are that people can find something that helps them, right? And then the amazing thing is kind of what you said before, which is that some people might find that drug that treats their mast cells and it might help numerous of their symptoms at once. And so you hear sometimes people just so thrilled to death that for example, maybe their joint inflammation and their anxiety is better, and their skin is better and their GI. And so I think that’s what makes MCAS so exciting is that sometimes it can be the root cause that you’ve been looking for, for so long, for all these different problems. So I know in the future we’re going to have separate episodes about this, but one thing that I love listening to you talk about is nutrition, lifestyle, sleep, environment, all of those kinds of things. And so I know those are always a big part of the treatment that you think about when you’re helping people. Is there anything else physicians should know about treating MCAS or patients should know about the process?

[00:33:51] Dr. Tania Dempsey: I think that Patients need patients and doctors because, because it’s not not very often an overnight success treatment. you’re in it for the long haul. I think it’s just better for people to understand that MCAS is often a lifelong condition. Sure there are cases of MCAS that can be reversed for various reasons, for the most part, patients idiopathic MCAS which is, they were probably born with a predisposition for it. Over time, different triggers brought it out. And it’s very likely that their mast cells will be somewhat dysfunctional you know, for all their life. So here’s the positive spin, right? It doesn’t mean that that they have to have a poor quality of life. It The goal is to get things under control and, and then you know, if there are flares over time, you have more tools to address it. I’m saying that because I think it’s important for doctors and patients to know that they’re not going to get better usually in a week where all their symptoms, we’re going to try one thing and all their symptoms are going to go away. Sure it could happen, but it’s a process and it can take months. Some cases where it’s very severe, it can take years. It’s trial and error and working on all the different pieces. And because I’m an integrative physician, I’m also looking at other things in addition to MCAS that I’m treating to. the patient’s, overall health. So it’s a journey. I think that MCAS patients need a lifetime of being followed and monitored. And I think that it will improve their quality of life, their health, everything overall. If we know during the flares what they need, and we learn from each flare what they need, maybe the flares get further apart. Maybe they don’t have years or, or more. So I think this is just what doctors need to understand and patients need to understand. And I think that with those expectations, some of the frustration that comes from this. I I hear this all the time actually from patients. We’ve been at this for three months. Why am I not better? Well, you are a little better actually, right? But you’re not fully better cuz we haven’t tried everything yet and it takes time to try everything. Right.

[00:35:59] Jill Brook: That’s great. And that reminds me that your partner, Larry Afrin, has a great quote about how dealing with MCAS requires patience, persistence, and a methodical approach. And we’re going to hear from him next month when you take over as the main interviewer, and I cannot wait to hear your guys’ discussion. And I just cannot thank you enough for all of your time. I know how busy you are and thank you a million.

[00:36:26] Dr. Tania Dempsey: Oh, thank you for having me, and I’m excited for the remaining episodes we’re gonna have. It’s gonna be lots of great information.

[00:36:33] Jill Brook: I know we haven’t even started yet. For all the awesomeness that I’m excited about. Okay, so hey listeners, that’s all for today, but we’ll be back again next week with a normal episode of the POTScast and we’ll be back again next month for another episode of Mast Cell Matters. Until then, thank you for listening. May your mast cells behave and please join us again soon.