April 2024 PEP Talk: Autoimmune Disease and Blood Clots

welcome everybody and hello um we're very excited for tonight's pep talk uh on uh decoding the link between autoimmune disease and blood clots and tonight Todd and I are joined by uh really two experts in this field uh the first is Dr uh Jordan schaer who is a hematologist focused on uh coagulation disorders uh Dr schaer completed his undergraduate degree at the University of Michigan uh he received his medical degree from Michigan State University College of human medicine and he completed his residency in Internal Medicine at the Mayo Clinic and then return to Michigan I think you are a Michigan person uh by birth I know you do the hand thing Michigan uh to complete his Fellowship in hematology and medical oncology uh his clinical interests include thrombotic disorders his academic interests include Health disparities cancer Associated thrombosis anti-platelet therapy and anti-coagulation um he is also a member of the national blood clot Alliance uh Council of emerging researchers and thrombosis and we are delighted to have you with us Dr schaer uh we are also delighted to have H Dr Jason knight uh Dr Knight focuses on the role of nutrifil platelets and endothelial cells uh in the vascular complications of autoimmune and inflammatory disease such as antiphospholipid syndrome lupus diabetes Etc uh he has been published in more than 130 peer-reviewed manuscripts he is the corresponding author on Publications and science uh transational medicine nature Communications journal of clinical investigations and all of the leading journals in the field of Rheumatology um he has been recognized with so many awards I can't possibly list them all um but we can tell you from the American College of Rheumatology and the Lupus Foundation of America uh he received his MD from the University Michigan medical school where he completed his residency in Internal Medicine and his Fellowship in Rheumatology and you were really a um world leader um in many aspects uh of this area so thank you both for joining us tonight um we are going to uh a dispense of the doctor name and we're going to go to a first name basis now so we're going to uh very shortly kick off with Jordan and Jason but before we do that uh two things Todd is going to lead us through some poll questions and I just want to remind everybody um tonight's event is for educational purposes and it is not to be giving medical advice to anybody please if you need medical advice speak to your um doctor directly um that is not our goal here today to uh advise anybody but to really provide educational information so that you're a more more informed patient so with that I'm going to turn it over to Todd very wise words lesie and uh I'm going to bring you some poll questions folks we do this we love Gathering the data we want to figure out who you are what's going on with you so that's why we ask you these if you don't mind uh fill in out this poll and we'll do one at the very end as well your first question do you have an autoimmune disorder yes or no if yes what is your diagnosis if you could write that in and have you ever exper experienced a blood clot yes or no and number four the final one has your risk of uh blood clots ever been discussed with you by your medical team yes or no you can fill those out we're going to go over the results I want to remind you that all of our pep talk episodes all of them are fantastic it's like going to blood clot school they're they're awesome if you look on the website and look under patient resources you will find the entire uh media library so that's just something to uh keep in mind and we're going to have the uh results here in just a second here you go uh so uh the first question do you have an autoimmune disorder yes 72% of you do 28% said no if yes what is your diagnosis uh those aren't popping up in here so I cannot read those um the third question was have you ever experienced a blood clot yes is at 87% 13 13% of you have not had a blood clot yet so you must be here for the education and that's excellent uh has your risk of a blood clot ever been discussed with you by your medical team yes or no yes 62% but 38% said no so some folks in the dark out there so thanks folks and we'll do another poll at the very end of the show Plusle okay thanks Todd that 38% number is a little bit disconcerting for for frogs okay it is so our topic tonight is decoding the link between autoimmune disease and blood CLS um and actually uh Jason we're gonna kick off with you this evening but we'd like the two of you to jump in together so it's a very informal uh discussion process and and it's great to have uh you know somebody who's a who's a specialist in the Rheumatology space with a hematologist uh I wish all patients had had access to that so um so Dr n let's talk about you know exactly what is autoimmune disease first of all because this term kind of gets thrown around a lot and so we'd like for you to just explain to us you know what is it what is autoimmune disease and this description is so vague so are there certain autoimmune diseases that lend itself to higher rates of BT and if so which ones okay that's a great question and thanks for inviting me uh Leslie your organization is doing a lot a lot of good out in the world and it's uh really exciting to be here um yeah autoimmune disease I guess to understand that you have to first understand the immune system at least at a high level and uh the immune system exists to help us combat things from getting inside our bodies that shouldn't be things like bacteria and uh viruses and uh as organisms get more advanced uh specifically the vertebrate organisms which we are part of there's something called uh adaptive immunity which is pretty clever it lets that immune response really get tailored over time to the specific uh organism that you're trying to combat um the EV clever thing is that it's able to remember what it's done so I think we know from vaccinations and past infections that this should help us give uh protection against the next time we have an exposure and that's because of this uh kind of nicely trained adaptive immune system but in autoimmunity things go wrong uh so you can probably tell from the word instead of attacking uh the bad guys like it's supposed to be it attacks our own uh body and so we can look for that in different ways a common one is to look for certain types of antibodies in the blood are not protective antibodies but antibodies that could do harm and uh I mean I think I could just say at a high level I'm sure Jordan uh is maybe better at me to talk at the entire landscape in terms of blood clotting risk with different diseases but antiphospholipid syndrome the one that uh my research lab especially studies I think is the classic example of a autoimmune disease is that raises your risk of blood clading and I think everyone would agree with that um other autoimmune diseases and you know that might be a good time to pitch at the Jordan to kind of talk about I think what I see in the clinic is when we have diseases like lupus or vasculitis or bashet disease and those diseases are active like the inflammation is really on the attack I think that's the time those folks carry the highest risk of uh blood clotting and so we sometimes might have a clot that happens in the setting of active disease but if we're able to get that calm down over time we think that's going to give someone a lot of protection uh going forward that's really it's really interesting and does it kind of run the gamut in terms of you know when I was first diagnosed with my pulmonary embolism I went to the hematologist and she came in with her fellow and she looked at me and said you have rosacea and she scared me and I was like wow I'm here to talk about my blood clot and I'm like why is that even relevant and she said it's an autoimmune disease so I mean does it scan the Horizon from something as benign as that to to APS as an example yeah there's certainly a spectrum and I mean the tricky thing there's even a spectrum Within These different diagnoses these are mostly diagnostic buckets that we've had since the 1980s and you know the hope is that over time we get better and better at kind of refining them and sorting out some of that um some of those differences we see in the clinic uh I mean I think especially we look for the one called rosacea because it can sometimes be mistaken for the butterfly rash that uh goes with lupus I have a feeling that's why they were especially having that in their mind especially if you're talking to a woman that's something you should be thinking about out but this is something Jordan and I were talking about in anticipation of this I think uh it's relatively rare outside of APs that we would recommend testing for all kinds of autoimmune diseases after a blood clots unless you're kind of guided to do so by the clinical picture so that's where you hope you have a doctor that's taking the time to listen not just to your blood clot story but to the other aspects of your health to see if you know some screening testing should be sent and maybe uh you do need to see a special to rule that in or out or I mean if there's someone else that's just totally asymptomatic I think it would be harder to to justify that kind of workout yeah yeah sometimes people will have multiple autoimmune conditions and so the presence of one or a strong family history of autoimmune disease can kind of clue you in to uh look for other things as well as something we'll kind of think about no that's that's a good point Todd yeah and let's expand on this a little bit um Jordan I'm GNA go ahead and ask you um if you could just explain to the audience um why the relationship between autoimmune disease and VTE I mean ju I mean just explain that relationship what is that interplay between the immune system and BTE um when we're treating a VTE patient what would cause you to suspect an underlying autoimmune issue what would you know lead you to suspect there might be one at play how would you test for it and what would the VTE treatment protocol be you like yeah yeah thanks that's a good uh good question and thank you for again for the opportunity to be here uh I actually prepared a couple slides that I can kind of go to that might uh kind of get at uh the question you're asking in kind of my Approach i' I'd agree there's definitely a spectrum of autoimmune diseases and how you know much we worry about those diseases uh when it comes to both Venus uh like de deep vein thrombosis and Pulmonary embolism clotting risk and also arterial thrombosis and then yeah each patient can be you know highly variable in how that disease affects them uh and then how that uh affects you know uh kind of like our our gestal about how much that might impact you know clotting risk uh you know as far as how active the disease uh is so I'll pull up a a a slide here um so you know in I think one thing it's important to you know this topic doesn't get a lot of uh attention I I've even you know recently been around a group of hematologist where we were talking about the you know uh some general autoimmune diseases and the risk of thrombosis and said well those diseases don't really increase the the risk so I think I think one of the reason why this isn't you know commonly talked about is some providers may not be aware of it and then the other thing is that some of those uh autoimmune diseases are less associated with clotting risk than others like antios antibody syndrome is strongly associated with thrombotic risk whereas some of the other uh autoimmune diseases uh are more weaker clotting risk factors and might not really affect you know patient management that much so that could be kind of why this topic doesn't get a lot of attention but a lot of patients are interested in this and and do have a lot of you know questions on it you know the autoimmune diseases that we commonly are thinking about and looking for you know would be definitely nsid antibody syndrome inflammatory bowel disease so like Al of colitis and Crohn's disease vasculitis uh things along those uh lines and the the immune system you know inflammation in general has long been recognized uh as you know something that increases uh risk of uh thrombosis just before you move forward you know we use these words kind of interchangeably but again inflammation is what exactly yeah so uh that's a good uh question so inflammation uh generally refers to so there can be like clinical signs of inflammation so sometimes when someone has a deep vein thrombosis for example uh they'll come in with an inflamed leg and and why is it inflamed it can be from the clot it can be from a clot plus infection uh that's when we see you know redness warmth uh swelling uh those all things are signs of uh inflammation uh now what causes the inflammation in the body that's often you know part of uh the immune system it can be the release of inflammatory what's called cyto kindes or uh molecules in the body that then your body is uh responding to uh and it can be uh there's kind of a complex uh you know mechanism by which you're uh body generates uh you know an inflammatory response often uh due to some you know trigger so the trigger could be like infection or a blood clot or something like that your body has these mechanisms to respond uh through uh an an inflammatory uh process and sometimes inflammatory processes are short or sometimes they can be long-term uh inflammatory processes and oftentimes autoimmune disease can be a long-term inflammatory process that can increase thrombotic risk uh over time okay thanks sorry I didn't mean to interrupt but so that gets the question you know like one of the first things when we're seeing patients is why did they get a clot you know why do some patients uh develop clots and others don't and even you know within autoimmune disease you know why do some clot and others uh don't and often we're looking at multiple factors you know and autoimmune disease can be one of many factors that we're kind of think about and we want to kind of think about you know for people who haven't had a clot what's the risk of getting uh so if you know you have a disease like lupus and you've never experienced a blood clot what's your risk of having an initial event and then for you know survivors of blood clots you know they're often who are more commonly who I'm seeing in clinic you know they're they're wondering you know they're worried about the clot coming back you know how does this autoimmune disease affect my risk of another clot you know and how does that change if I'm on the blood thinner or if I'm not on the blood thinner um and you know and then part of that discussion is also you know is your autoimmune disease you know uncontrolled is it a disease where your doctor is having to you know Dr like Jason uh has to give you a lot of you know medicines to control the autoimmune disease or is it a disease that's not well controlled that's been you know kind of causing you a lot of uh symptoms that have been linked to the autoimmune disease and I would just jump in I think that's a good place to emphasize inflammation because you know maybe you have the disease lupus kind of all the time but there's periods of time where the body is more inflamed and things are really churning away versus other times when it's a lot quieter and it's during those inflammatory times that that the risk is clearly higher yeah and just just another question I know we we've got you've brought a history of somebody here a patient but just inflammation tend to lend itself more to pulmonary embolism or is it relatively equal between PE and DVT in terms of somebody actually triggering a VTE event is there any data around that I don't think so some uh some inflammatory disorders uh and autoimmune disorders can affect certain parts of the the body so uh there can be some kind of Association where you know if you uh potentially had inflammation of the blood vessels of the lungs where maybe you'd be more risk but at one than the other but it hasn't really been teased out very well uh to as far as I'm aware uh to that uh one would be more uh you know DBT would be more uh risky than PE uh because often those can be uh interconnected uh but some we always think about the anatomic site about what is inflamed uh so for example patients with inflammatory bowel disease might be more prone to blood clots in the splenic uh vein system so like portal vein thrombosis or blood clots uh in the abdomen uh that you don't really see with other uh you know uh clots an phospholipid antibody syndrome is one where we worry about both Venus and arterial thrombosis uh depending on how it uh how it's presenting but yeah and Jason your point was also good yeah some of some disorders like inflammatory bow disase will have uh you know episodic uh periods of inflammation uh like a flare of Crohn's Disease for example and so how we approach somebody who developed a clot during a flare of their disease compared to when their disease was stable might be a little bit different because that might you know suggest you know was the inflammatory bowel disease playing a role in the in the blood clot so okay yeah so um kind of go going you know people have looked at you know causes and and this is something you know that included this slide mainly just to kind of emphasize that there's a lot we don't know still about these uh autoimmune disease I'll talk a little bit about why that is but uh you know and also how to handle the variability between patients but you know that plotting history is long evolution of you know trying to understand why people form uh blood clots you know historically at one point you know blood clots were felt to from be from Evil humors uh you know postpartum blood clots so blood clots that happened after pregnancy at one point were termed milk leg and felt to be from unconsumed milk in the in the leg and so the treatments at those times would be things like breastfeeding and blood letting uh to try to you know fix whatever they thought was causing the the blood clot uh kind of tying into that you know if we think that autoimmune disease is playing uh role in uh forming blood clots we think that it's important to address that as the underly cause to follow up with a rheumatologist or a specialist in that autoimmune disease and treat that because if that's driving the clotting we want to try to control that um and so inflammation even you know back into the 19th century has been recognized uh as you know uh associated with clotting uh as and they you know variously thought you know that inflammation of the vein wall was what was uh causing clotting and so some of the initial treatments for deep vein thrombosis were just anti-inflammatory uh medications and uh blood letting uh you know and eventually a pathologist kind of came up with what this known as Vera Triad which is this stasis so lack of blood flow uh vessel wall changes uh which is kind of inflammation that that inflammation and hypercoagulability and autoimmune diseases really affect you know can damage the lining of the blood vessels the endothelium so the vessel wall changes and it can promote hypercoagulability uh and that's kind of why those two me isms are kind of why autoimmune diseases will uh be involved in uh promoting uh you know blood clots and I won't spend a lot of time on this picture but you know there's a lot going on in the in in the clotting system I what I enjoy about doing hematology is this balance between you know bleeding and clotting and your body has a complex system to regulate this you know if you if you get a cut in your arm you want to form a blood clot there but you don't want to form a blood clot in your leg so you want to form a clot so you stop bleeding uh but you don't want you know blood clots throughout your body and so your body has kind of like a gas and a break to you know kind of control the clotting uh system and autoimmune disease can like cause can cause disregulation this is an example of some of the you know way that antiphospholipid syndrome you know develops but it can cause some disregulation of that you know that balance between bleeding and clotting that can be you know we talked about the cyto kindes we you have coagulation factors that can can be increased and you have natural blood thinners that can be decreased in the body uh some autoimmune disease activates platelets like the yellow things here uh that can you know be informed in uh blood clots you can see these uh you know components you know affecting the lining this is inside the blood vessel um you can have alterations in how your body breaks down blood clots where it doesn't break down blood clots as well and there can be release of what's called micro particles into the circulation that that kind of promote uh clotting and so you know one thing I emphasize with patience is that you know it's this kind of spectrum where you know there's these you know autoimmune diseases that you know we commonly see like that patients will have um and that aren't very active aren't really needing treatment those often don't play a role in how we approach you know blood clot management uh then we have these things that are kind of more in the middle maybe like sarcoidosis things like that things inflammatory bowel disease uh that you know can influence you know management they are associated with the risk of an initial blood clot and a recurrent blood clot you know have a good Association there and then there's highly uh you know prothrombotic conditions you know things that make you prone to blood clots like antiphospholipid antibody syndrome so it's kind of that that spectrum and kind of understanding where you are and then you know these circles overlap so there's some people just you know labels are helpful to kind of have these discussions but there are some people that uh may be you know on a on a spectrum that are more or less affected by their uh given disease that would push them into a different you know different category well to Leslie's point is I'm trying to not get distracted by the chat that I'm seeing pop up but I mean you see how common it is for people to have multiple autoimmune uh conditions in one person right so they don't always read the textbook uh that kind of defines them separately but you know within one person there's multiple things happening I want to um just pause here for a second and Jordan I want to come back to these slides uh in a bit but um Jason given that you jumped in let's let's take this a little bit further so one of the most common autoimmune diseases we hear about relative to VT is APS and talk to us about that because that is really one of your big Specialties APS and you know the causes if known um the treatment how does inflammation impact this and is it correct that APS is um that mostly women get APS that's something like 80% of all APS known cases are actually um uh with women and again why is that is a genetic is it not genetic so um and then the other thing I want you to talk to us about I know I'm thrown a lot of questions at you here is there aren't a lot of doctors who are specialists in this area and so how would somebody if if there are research opportunities or trial opportunities um could they get involved in participating yeah thanks Leslie for that multi-prong question uh fortunately that one you fed me a little bit ahead of time so I had a couple bullet points here I wanted to hit but um yeah APS you we think it affects roughly one in 2,000 people that's based on epidemiology and the USA and Europe primarily not super diverse epidemiology so there is an UNM D to understand in other like non-white populations especially how common uh APS may be so it's kind of right on the cusp I sometimes say that it's a pretty common rare disease like if you want to scoop it up as a rare disease you can but uh you know it's right on that threshold where for example Congress defined rare diseases less than 200,000 people in the US affected and it's kind of right at that uh right at that threshold um you know when we make the diagnosis we look for certain types of antibodies in the blood which uh I think and talk a lot about but maybe uh not something we need to go into Super in depth but terms you might have heard like anti cardial lipen antibodies or there's a test called lupus anti-coagulant that's another way that we can uh test for those um I think you know again we don't need to go into it too much but under the umbrella of APs I think the most famous thing if you will is that it causes blood clots but we also recognize that uh you know it impacts the ability of people to carry pregnancies to term and so that's a common one we have to confront in the CTIC and there's also other features why why is that well and so yeah that we think is a little more like the inflammation of APs versus the uh blood clotting side of it the prediction would be whether placenta is just filling up with clots but I mean what you see is anything that stresses the placenta can trigger some clotting in there but the work in the research laboratory and the new treatments that are being proposed for the clinic are much more focused on the system versus uh blood thinning per se but I think that's part of the reason to explain the 80% affecting women may be slightly higher than what I would have said but it's definitely tilted towards women but the fact that there's certain manifestations that you know not everyone is at risk for I think is part of that because you know even though I can list off a bunch of things APS does that's where the individualization comes in because not everything on that list is going to happen in in every person and so there's other things like low platelets and heart valve problems that we have to deal with in the clinic and then some that are I hope we can eventually crack the case but things like brain fog and muscle pains and things that we see in a lot of our other autoimmune patients are definitely uh something that happens in APS and definitely things that do not respond to blood thinning medications so there's unmit need there um I mean my elevator pitch for why we need more research is that uh it's an autoimmune disease that we mostly treat with blood thinners so so I mean I think we've already talked enough today to understand that there is a disconnect there I think there's still an opportunity to treat it closer to its source and that's uh you know I think blood clotting or blood thinners can keep the blood clotting at Bay to an extent but they're still not perfectly effective and you know they do come with risks around bleeding and so yeah I'm very hopeful that in my lifetime we will have much smarter ways to treat uh APS is is there a preferred anti-coagulant because I see in the support group some people will mention the doctors are going no can't be on Warr no you can't be on zalto and back and forth with that as uh have there been any uh studies researching done do do you have anything to add to that as far as an anti-coagulant yeah it's an important question um I mean so warrin is the well so probably most people on this this call are familiar with warrin but that's a very old style medication uh newer types of treatments have come around these are ones that doctors call dox which is kind of an obscure term this means like direct oral anti-coagulants but these are drugs like uh River roxan or zerto apixaban or elquist that have a more targeted mechanism than warfront and they are easier to take there's less need for lab monitoring unfortunately in the early studies comparing these side by side with warrin it didn't seem they worked as well in APS I mean still the numbers of people that have been put into these trials are you know a few hundred not a few thousand and I think right we don't have the whole story and I think to say that everyone with I think there's a future where we're going to be smarter about understanding which subgroup of people with APS might do okay on these easier to take drugs but until that moment comes we you know generally discourage their use is the first line uh treatment that we would like to try warrin first and you know if there's problems I mean we can always individualize but if your doctor's telling you you have APS and shouldn't be on Warr that's a doctor that concerns me a little bit because that's uh yeah that's not accurate info but yeah I mean my patients with APS tell me that they are finally hearing this term pop up in like on TV because when they watch a commercial for some of these uh new drugs that's now getting called out as a a reason to potentially avoid them and it's I think they sometimes feel like they're a drift without anyone recognizing their kind of uh clunkily named uh diagnosis and so I think the word is getting out but there's likely opportunity to do better with getting that word out yeah there's not enough not enough information come back to the um the implication for women again and let's just walk through that why women are more likely to have APS well and uh yeah and I think in framing the question you kind of made the point that the fact that autoimmune happens more common in women is not unique to APS that's certainly something like lupus is the classic example where it's more like you know nine or 10 to one although like APS when a man gets lupus it can often be a very severe case so it's not that like when it pops up in a man it's going to be a mild case not really uh this is something that's been researched for some time and there's still not I think 100% answer you know an obvious thing to think about would be the different hormones in the body and there's probably something to that I think a lot of that risk is driven by relatively younger or a lot of the disconnect between the risk in men and women is driven by relatively younger people um where you know those sex hormones are in a full play the newest research is around kind of the X chromosome which is probably a little wonky um we don't have to go into in detail certainly but there was an interesting paper out of Stanford earlier this year where they were studying a gene that is expressed by the ex chromosome in pursuit of silencing the second X chromosome we don't want women to have a double dose of all those genes that are on the X chromosome necessarily but one of the downsides of this gene expression could be tilting people towards uh autoimmune so it's if we could precisely answer that question it reasons that we would be smarter about treatment but um as far as you know there's still not a definitive answer but it's a pattern that you know you have to know about and can't be can't be avoided so when women are diagnosed do they tend to be diagnosed um at a younger age um and then if that is the case what happens during the course of a woman's life as she gets older does the impact of APs decrease does it stay with them forever is this something that they pass along to their children potentially o well um yeah we do get yeah as you could imagine and rightfully so people ask us a lot about like the risk to their uh family members uh I mean the pattern we see in the Rheumatology Clinic is really one of autoimmune diseases kind of generally running in families and I would guess I'd be surprised if that doesn't resonate with a lot of people in the audience that um you know you diagnose someone newly with APS and there's a mother that had rheumatoid arthritis or an ant that had Scleroderma and that's prob that's because there's no single Gene that's driving all of this there's lots of like little genes that play a small role and probably the more of those you pick up the more likely you are to be tipped over into an autoimmune uh condition I think an instructive example for genetics is twin studies because they're kind of easy to understand like you know that identical twins have identical genetics and uh you know kind of regardless of the disease whether it's rheumatoid arthritis or lupus or APS you see something like a 25% concordance so if your twin sibling has APS we might tell you there's a 25% risk in your s and on the one hand that's pretty high like if someone told you you had a one in four chance that's uh meaningful but on the other hand it shows that there's still pieces that we can't explain by genetics that things we're getting exposed to in the environment at the wrong time that tricks the immune system could be things like smoking that cause chronic inflammation in the lungs but that's not enough to explain uh most examples so that's when we start to invoke certain infections that may confuse the immune system maybe some of these chemicals that are in our supplies I mean these are all things to kind of worry about and you know what role they may be playing in tipping that balance if you have a predisposed person that gets exposed to something at the wrong time that's when an autoimmune disease can be unlocked I think interesting okay before we uh go back to Todd and Jordan um someone did post uh in the chat here I just want to address it um she was told that her adult children did not need to be tested so um I'm assuming she has either autoimmune or APS but that her um and I'm sorry if I didn't see the original thread here um if she does you know how how should she deal with this issue yeah I mean that's what the textbook would say and the advice I typically give myself in the clinic I think and that's just because no single autoimmune disease at least the group we're talking about tonight run in family strongly enough that we recommend uh preemptive testing I mean we may get smarter and smarter about this kind of like what we're seeing happen in the cancer field where it does seem they're getting better and better at you know turning genetics into you know very specific information about risk but you know we're not there I wouldn't recommend kids getting a big Auto antibody profile I think what is important that goes back to the point that Jordan kind of made that uh I think he was helping to emphasize something I should have said which is uh knowing knowing someone's family history does play into how we think about things and so what I would advise is just making sure family members are educated um about that family history because if something does come up there is a new symptom I think that can be quite helpful for the doctor when they're thinking about what might be going on okay and then sorry guys um just one more thing so somebody did ask about if you could address the question that I posed about aging and APS women get older how does their autoimmune illness play out yeah I think uh and I don't know if Jordan has anything to say on this one I mean uh I think everyone's a little different um sometimes after working with them for a few years we really find the perfect cocktail of medications to get things in check and that's kind of the ideal situation and that that's someone that I hope will have just a very excellent prognosis uh going forward um I mean we do see folks and sometimes there's a gap in care or something that happens and you know they pop back up three years later and a lot of new things have happened and are worse and so it's almost like there's so many different patterns uh I try though not to be I mean I think most folks you know we get them in we get them on the right treatments we can expect a pretty good prognosis so I would not live in fear things are going to get worse year by year because that's not that's for sure not the dominant pattern that we see okay all right thank you um Jordan I know we didn't finish your slides and and your questions and so I'd like to to come back to you if we could continue that that would be great and then I'm just curious Jordan when do you always refer your patients to a rheumatologist if there is an autoimmune issue and Jason when you have a client come in a patient come in who has an autoimmune disease do you refer them over to Jason like what is this kind of relationship or what should the relationship be between the rheumatologist and the hematologist so that you know the people who are listening to us tonight have the right teams in place yeah that's a great uh great question and something that uh often comes up with patients because some patients aren't even aware uh that some patients I see aren't even aware what Rheumatology is and what they do and why would they see two doctors for one disorder uh you know if why can't you know just one me you know be enough and and it's on a Case by case patients there's some patients that have primary anasol liid antibody syndrome maybe they've had it for 10 years they're doing well there's no suggestion that they have another autoimmune disorder and you know maybe they're traveling from a long distance away they don't want to see another doctor or anything else and so I often follow those patients on my uh on my own but uh some patients you know are you know this is a scary disease and you know I think you've covered in some of your other you know lectures about the emotional impact that some of these clotting events or pregnancy uh you know complications can have and so a lot of patients I have really want to know everything you know possible uh about their disease and and what they can do to try to you know optimize their you know outcomes and so a lot of patients are interested in seeing uh Jason uh when when I see them and I kind of offer that and then I especially want encourage patients to be seen if there's any hint you know when I'm talking to them that there might be you know lupus or some other autoimmune disease that might be a piece of uh of the antiphospholipid you know antibody syndrome and so uh the benefit there is that I can spend an hour talking to them about blood clotting and anticoagulation and and those things and then the autoimmune piece uh you know can be addressed by uh you know Jason and his group and then we're often in communication we meet regularly uh and talk about you know some patients and that kind of thing where if there's you know patient where you know we need to you know talk about their uh their care uh we're able to communicate and there's other uh other rheumatologists that focus on APS at uh at our institution as well so I don't know Jason if you have any other thoughts on no I think that's all that's all right I mean I'm kind of blessed to work at a place where we have hematologist as good as Jordan that uh lowkey could probably be rheumatologist also if they wanted to but uh leave that lane open for us but um I think for the doctor's side just the other piece of it is Jordan was hinting there are a lot of sometimes difficult decisions to make and having someone else who knows the you know the person well to bounce it off of is just really valuable and that's why it tends to be the tough cases that we discuss together but I think we all learn a lot through that process and hopefully it leads to better uh better decision- making in the long run yeah and Jordan just said something amazing which is like can talk to my patients for an hour which is unheard of in these days and so making sure you have enough time with your patient is really important we really want people to advocate for themselves and so don't be afraid to ask for the rheumatologist or the hematologist or the consultation between the two of them so you know it's your your life your body your disease you you get the care that you you need love to go back to the slides Jordan with Todd he had a bunch of questions that I don't think we answered yet um so if you don't mind maybe bringing those back up that would be great and then after that we're going to go into Q&A because we have so many of them yeah we do yeah I can quickly just go through a couple more slides but I'll I'll be brief because I don't want to I want to leave enough time for uh you know to cover some questions uh but in uh you know kind kind of some of the things we covered you know I know some of the things that kind of comes up is you know if you have you know symptoms suggestive of a diagnosis you know how does that approached and you know often times you know the somewhat in hematology we're often like detectives trying to you know dig through years and years of Records you know maybe there was a scan a couple years ago that made it hinted at autoimmune you know disease or you know an abnormal blood test that was previously done you know one of the reasons it takes a long time to uh see patients with you know clotting disorders is you really have to dig through all the records and their symptoms to try to determine you know if there's any uh pattern to them that can uh you know and sometimes if I'm not sure I'll refer to to a specialist you know it could be you know hey this kind of sounds like inflammatory bowel disease you know maybe let's have you see a gastro neurologist or a neurologist uh for an autoimmune disease affecting the uh you know central nervous system uh and then for people with an established diagnosis which is probably more common that I'll see somebody that has a known autoimmune uh disease you know I try to work with their uh specialist in their autoimmune disease to get a sense of how active is the disease and is there anything else we could uh do you know sometimes people I've got some patients that have auto immune diseases that have affected their ability to take pills so we have to take that into account when we're picking an anti-coagulant we might have to do an injectable uh like low molecular weight heprin instead if they're not able to you know take uh oral medications and often people are on multiple medications we have to think about drug interactions and and and how to select the best anti coagulant for a given patient uh we try to answer for patients you know how does their diagnosis affect clotting risk uh and you know does treatment of that condition kind of improve that risk and so you know some of the things I'm trying to sort through when I'm seeing patients you know why did they get a clot you know do they need to be on an anti-coagulant if they do you know uh how long uh do they need which antiquin is best that's what we're talking about a little bit of the warrin with antifit anab body uh syndrome you know is often recommended and then some of these disorders you know one thing patients you know might not realize is that some of these disorders can be associated with an increase risk of aosc orotic disease or plaque buildup in the uh arteries and so for some autoimmune diseas is I'm really encouraging patients to be following up with the primary care doctor as well make sure the blood pressure is controlled cholesterol is controlled uh those kind of things because you know following patients for years we don't want to you know have them develop other kind of problems in other you know vascular uh areas uh other than the deep vein thrombosis or our pulmonary embolism I don't know about you Todd but I did not know that nobody has ever actually mentioned that to us that no um they should be checked for that as well what is that correlation yeah so some uh diseases are associated with uh an accelerated uh rate of atherosclerosis and so sometimes I'll be you know asked to see patients who are uh relatively young uh and you know whether it be on scans or invasive image you know diagnostic tests uh that they have a lot of uh you know plaque buildup in the uh in the arteries and sometimes that can be associated with an underlying uh autoimmune process again these are generally like uh the stronger autoimmune kind of uh conditions that we'll see uh which can kind of be you know unique from arterial blood clots otherwise or cardiac uh intracardiac blood clots but uh when when there's been articles that have you know some of the Sciences kind of early on this but and with some of the diseases but if there's a suggestion you know that that they're at increased risk for heart disease or those kind of things down or Peripheral arterial disease uh you know I I tend to encourage you know when I send a letter to their primary care doctor I tend to encourage primary G doctor to try to optimize all those risks and and we want to do that anyways because you know some of these things are also bleeding risk factors you know so some people I have have nerve damage you know from their autoimmune disease uh and they have a risk of Falls so we talk about you know what can we do physical therapy you know make sure their vision is corrected those kind of things so that they don't have any Falls uh if they have you know their vascular you know vascules at risk you know we want to make sure all that's good and then it's part of just kind of uh controlling you know uh you know blood clot risk as well so I'll skip over these but you know some just general recommendations to kind of close up my you know section you know it's good to you know build your build your team of of doctors that you uh that you feel comfortable with uh you know this can often you be you know whoever is prescribing your anti pulation but you know primary care doctor rheumatologist gastron neurologist neurologist you know sometimes uh people are unsure about recommendations uh like we're talking about the dox you know you you might consider getting a external internal uh you know input and then you know kind of optimizing you know bleeding risk and and health and often these decisions aren't like static you know every time we come in we're kind of reassessing well how have these symptoms changed over time how's your clotting risk and bleeding risk you know evolved over time um and so you know these are some question you know things you know you might ask uh uh your provider you know uh you know some people it's understanding an anxiety-provoking time when you go through a blood clot and so you know sometimes you know feels well I want to be tested for you know every possible you know condition you know we have to be kind of selective because there can be some downsides to over testing too so we kind of focus on what are the tests that are going to change what we do for your care uh to improve your quality of life duration of life and uh you know any symptom you're having how can is there something we can do to make that better um so a question for you in terms of treatment though um if somebody has a blood clot and they come to you and then you want to um test them for APS or frankly any other autoimmune disease do you have them come off their their blood thinner or can you do all of this testing while they're on the blood thinner does it in any way influence the results yeah that's a good uh a good question in the mainstream testing for an aoso lipid uh antibody syndrome there's the anac cardial there's three you know main blood tests two uh out of the in in within that they'll come back as separate line uh of testing but uh two out of the three can generally be done on uh anti-coagulation the antibody uh testing the testing for the lupus anti coagulant is often you know subject to uh interference uh by the anticoagulant uh so you know it has to be kind of uh individualized on how uh how providers you know kind of approach that you know sometimes you know it's been tested before they start anac culation and then you have a sense of you know you got an accurate measurement of that lupus anti coagulant uh for patients that are already on an anti-coagulant it kind of depends on the details uh surrounding uh the the claw and and the given uh patient on on what how we uh how we approach that to to see uh because we don't want to leave patients uh unprotected from uh anac coagulation and risking a a clot while we're trying to you know uh establish some other diagnosis beyond the beyond the clot itself so yeah that that is a good good one and there's a couple different you know tricks that we can sometimes come up with to to sort that out and so yeah I'll skip over the rest of these uh slides I'll want say there's a lot of challenges with you know autoimmune disease and thrombosis some of these disorders are rare patients are affected differently uh you know they're on different treatments and and oftentimes it's the characteristics of the clotting event itself that guide management rather than so was it an unprovoked pulmonary embolism vers a you know flot provoked by a surgery or something like that it's of often that distinction that affects management from a hematology uh point of view uh but we're always looking for are there other things that we need to be thinking about you know when making a a care plan and ultimately patients preferences and bleeding risk are often uh factors that we have to you know think about patients often have multiple things going on and we have to that's kind of what the fun of it is trying to work with patients and trying to find a care plan that works for their you know given uh circumstance so I'll tell I'll tell you what as as far as care plan I just need did something that worked right after six blood clots and being homo zycus Factor 5 lien and I've proven a couple of different times that I clot in three days if I'm have no anti-coagulation in my system so I'm just thankful that you know it doesn't work for everybody because each anti-coagulant is going to be different everybody's gonna have a different experience but but I've been on zalto for 13 years and it's done a great job and I'm certainly not gonna try to fix what what's not broke but um can we jump into some questions because I I that that got me to thinking um Jordan I wanted to ask you um a lot of people talk about diet so we we were just talking about uh you know your care team and I got to tell you two of the most important uh specialist on my care team was my therapist for the Post clot PTSD which was bad and a nutritionist because I knew I needed to lose 100 pounds and I didn't think I could do it on my own with no education on nutrition but we have questions come in all the time into the support group is there a certain diet I don't even like using that word but is there a certain nutrition plan that helps with maybe inflammation is there a certain nutrition plan that is that is best for blood clot prevention you know it's kind of General but do you have any feedback on that yeah that's a good uh a good question you know so uh for a lot of my discussions it it kind of will involve what anti-coagulant you know patients are on I I do like to have a good list of what supplements people are taking uh and what alternative because more and more I'm seeing patients are on you know some alternative medic that they didn't discuss and some of those are significant so I really like when you're you know giving a medication list I really like to know every actually specifically ask patients anything else you're taking recreational drugs alternative medicines those kind of things I'd like to get that whole list and if it's something I'm not sure of I send it on to the pharmacist and have them do a detailed you know dive in the in the drugs on the foods you know right uh being having a higher weight our body mass index can be associated with clotting risk and recurrence risk and so you know that dietary component is uh good so some of that you know uh you know maintaining a healthy uh weight uh and you know uh getting you know if appropriate and no other reason that you can't do like exercise in general uh exercise I think those are all good things uh uh to do to promote you know long-term uh health and Venus Health you know we talk about you know uh that as well specific dietary recommendations though for mainly for the warrin uh treated patients I'm sure people have heard the vitamin K uh you know piece of that otherwise I don't uh you know that people I do have patients that like uh ask about anti-inflammatory type diets and diets that affect inflammation but it's not something I routinely advise uh and if if anybody's doing any you know kind of extreme diet uh practice or something that's more unusual I kind of like to know about it if you know uh if people don't get iron in their diet and they become anemic I kind of like to know well I don't take any uh I don't get any iron in my diet uh you know vegan for example you know I kind to have that in my note so that way you know if I see that blood test come back and the hemoglobin went down uh that I know well maybe that's the the the reason otherwise uh you know if there some other things that I'll watch for more nutritional deficiencies and those kind of things but I don't have a certain autoimmune diet that I recommend what what do you think about uh fish oil so so doctors tell their patients you know no fish oil and then there's some doctors go moderation uh mine mine said I could I mean I don't take supplements but I get a ton of fish soared fish chia seed black seed all that um how do you feel about that yeah uh that's a good question so uh fish oil uh has been associate used for uh you know potential lipid benefits and so sometimes you know uh often I'll see patients that are on that related at the recommendation of their cardiologist uh there's a spectrum of fish oils like in terms of dosing uh like there's you know prescription level you know uh fish oils and kind of higher doses that people end up on uh there's been some link with bleeding risk on on some of these uh but that's been questioned in some other other studies so it's not something I hugely worry about if people are on it for uh for that uh reason uh there but if people are if I'm if they're high bleeding risk or you know they're having some kind of bleeding issue I'll kind of take a look at that and make sure that's part of that you know medication review to make sure that there's nothing that's potentiating uh that because there it was at least at a time some association with some of the fish oils uh and a slight increased risk of bleeding great thanks jordany we've had actually quite a few people have written into us about Hashimoto disease um and some of them have had um several blood clotting incidents and some haven't but they're very concerned that they may have uh a blood clot at some point in time any anything to share about Hashimoto and um the correlation to blood clots and if the folks that haven't had the blood clots should they be you know talking to potentially a hematologist about going on a blood thiner is there anything um out there on this topic yeah so as far as preventing an initial blood so hashimotos is one of the more uh common uh autoimmune disorders that we'll encounter uh when we see patients uh as it's being one of the more common uh conditions uh overall it's not one that I commonly like think about when I'm thinking about you know thrombotic risk you know I I try to make sure that their you know patients are following up on it you know with a doctor that manages Hashimoto and uh those kind of uh things that their thyroid is uh managed uh otherwise uh you know there's not to answer your question there's not really much uh we don't put people on a uh I haven't ever put somebody on a preventative anti-thrombotic agent so anti-coagulant or antiplatelet agent uh just for the reason of uh Hashimoto it it itself in isolation uh maybe there's some other circumstances where somebody would want to discuss that with their uh doctor but that wouldn't be typical uh and then for uh the risk of uh clotting you know there's mixed uh my understanding is that there's mixed uh literature on you know thyroid disease you can find studies out there that uh you know associate uh you know thyroid disease with uh different types of outcomes but it's kind of a mixed uh you know a mixed picture some studies show uh things and other studies don't really uh confirm those so that's why it's kind of uh on the provider end it's it can be kind of unclear you know what to do differently uh beyond that from me and for just to follow on to that so for some of these folks that had written in that have actually clotted um they wanted to know if they should be considered for higher doses of medication um you know that their their maintenance should be higher dosed anti-coagulant forever does does the concept of decreasing the dosage over time exist or if you've had multiple clots and you've got rheumatoid arthritis or Hashimoto or whatever it may be um will they stay on a high dose anti-coagulant typically for potentially forever oh so this is getting you're getting at more like the dose reduction after six months you're saying okay okay yeah yeah you know that that's uh you know the um extension trials where they kind of looked at you know initial management of a patients blood clot and then reducing the dose of a a pixan which is the trade name eliser River oxan uh trade name of zalto reducing the dose after a period of time you know there was a set uh criteria of you know who was included and it wasn't very uh the people included in those trials weren't extremely high risk of clotting but they weren't extremely low risk uh either and so you know this is one that you know I'd encourage people to talk with their you know doctors about and and kind of sort out on their individual risk factors where sometimes we're kind of looking well do you really match up with the people that were included in the study but the the study is in the hundreds of patients not in the thousands and didn't have you know extremely long uh duration of followup because you know some people I'm sure in the audience have dealt with clotting issues for years whereas these studies are often more in the spectrum of months and so you know there there's some discussion that needs to be had on on what the optimal dose of anulan is for a given patient based on their specific uh profile and characteristics okay thank you um Todd ladies choice I get one more well I something that I've like I said I'm I'm just you know connected to a lot of the patients in the group and something that I I've seen recently is uh some doctors have put their patients on a doac plus lowd dose aspirin yeah together um what's the reason for that is there is there more danger of bleeding with that and is just being on a lowd dose aspirin is is that helping with arterial and deep vein prevention or is it just arterial how does that all work yeah that's a great uh great question and that's actually one of the things that uh I'm interested in and doing uh research kind of on that uh combination about you know which patients should you know be on an anti-coagulant and an anti-platelet drug which does increase bleeding risk uh but the idea is you know especially you know vein clots are often treated with uh antiquin some other uh clots are treated more with antiplatelets and often times people have a reason for both you might have one disease that's often treated with an antiplatelet uh which you know affects the platelets and other disease that's affect you know uh an anti-coagulant related drug so a common example is you know coronary artery disease uh in a patient with uh Venus clotting and and should it be combined um and so there it's uh an evolving uh area you know is that the same for Warren and an antiplatelet drug compared to a Doak and an antiplatelet drug and if the Doak dose is full dose verse you know preventative dose and and It ultimately kind of depends on what the what is the reason uh for the anti-coagulant drug and what is the reason for the antiplatelet drug uh they do increase bleeding risk but there are some situations where combination therapy is an individualized consideration there's some where it's guideline directed therapy that they should be on you know after like a heart St or something like that you know often people and then there's some people where you know we look at this and it's like well you you probably don't really need the aspirin you know so maybe we can talk about you know uh you know stopping that so yeah that's a that's a good uh common issue we found about a third of patients that comes up that they've been prescribed both and okay yeah so it's not it's not uncommon that we'll see you know people on a combination therapy and and we try to do a detailed you know dive into their history to kind of see whether that's uh appropriate or not uh it's important to make your sure your doctor knows you're on the Aspirin because sometimes it doesn't get on the list uh given that good point good point thanks a lot Jordan that was great that is a good question okay uh what is the relevance for persistently lower intermediate levels of APs antibodies in a patient with a previously established autoimmune dis disease but no history of clots Jason might that be yeah I mean I think it's a I mean there's not a simple way to answer that question except that I do think the profiles matter like we can see a profile that we say is a very high-risk one and you know it's not the same as potentially more borderline antibiotic levels than no one that's had a problem before so we should not treat all yeah all of those results as equal and you know hopefully you're working with someone that can see some of that nuance and use it to help uh you know help guide guide treatment but yeah I think it's a Savvy question and one that we need to keep you any smarter about okay all right in the interest of time Todd I think we should take maybe two more questions and then we have exit polls I want to be mindful of Jason and Jordan's time this evening uh so why don't you take one I'll take one and then we'll go to poll questions yeah um pretty easy another popular question just from the last couple of days I don't know how you guys feel about that and either one of you can answer or both uh got to talk about smart watches just real quick and I want your opinion because we have a lot of people that are depending on these things um I have one I love wearing it I use it for certain things but you know you can also check your vitals with it or it says that it'll keep an eye on your vitals let you know when something's wrong uh how do you feel about SmartWatches can they be used as just like a general guide uh I I mean I I know that I use mine for sometimes calorie counting maybe for track stepping I don't know if I pay too much attention to my O2 or or anything like that but but I do use it quite a bit but how do you guys feel about smart watches and people using those I think it's not a replacement for a doctor uh quite yet although who knows if that's coming in the future but yeah I'll be interested to hear what Jordan thinks from my perspective I think more information usually better than less information as long as it's not being taken as the the stone tablets but instead uh as part of the puzzle but yeah yeah kind of along the I've had a lot of patients that have found them to be useful uh to track uh you know markers of their health and and that kind of thing over time I've had occasionally heard of patients where you know it alerted them to an abnormal heart rhythm and they got that checked out kind of thing by a heart do a cardiologist and it was uh useful in that sense and then but on the other end right it's not you know entire reassurance right where you can completely skip you know if you have a concern you know you still need to you know seek medical attention as you know depend on what the concern is some people I've had where they're you know this they're looking at the Smartwatch and their heart rate is okay but it's kind of you know still sometimes good to have you know uh be evaluated by a clinician if you're have a symptom or concern that needs and those with really high anxiety are just after a clotting event especially I mean our anxiety is already high you know and and looking at looking at some stats that may or may not be you know totally accurate or describing what's going on that that can just raise that level even more but thank you guys yeah that's a good uh right that's true okay um are there any new trials U that will start collecting data with APS and secondary diagnosis um that I could participate in I not being Leslie Lake but I being the patient who wrote this are there any trials out there that people can participate in yeah I think we're seeing more and more in this space we have a few trials that are active at Michigan if you look up APS research Labs uh you can easily find our lab website um you know most of those require someone to be on the ground uh somewhat nearby to what we're doing um but I think something that you Jord and I are both interested in is looking for opportunities to engage I mean to use technology like we're using tonight like I think we can get smarter about how to engage um you peoples all around the world and find ways that they can participate in research even if we can't easily give them a new fancy drug or uh you know draw their blood I think there's still other opportunities and I just see it I mean it's humbling and also motivating to read this chat as it's going across just uh I think we've all got to do better with uh getting the research to get answers to your questions and then also getting the word out there and you know they're both unmit needs that need hard work um I love it that they're hungry for information I mean that that's the way I was in you know when I started with my clots it's like I couldn't find any information at all if it wasn't for reaching out and finding the nbca you know I wouldn't be where I'm at today so people are hungry for the information and and uh we like to to give them the accurate information so before we go to the poll questions uh we do want to tell people that we're sorry that we can't get to everybody's questions but there were so many of them we're actually going to take them and we're going to try to create um responses to them it's going to take a little bit of time because there are so many um but we will endeavor to do better in this space and provide people with more information because it is so important and I'd like to put Jordan and Jason on the spot and say will you come back and do this again uh because it is such uh you know it is unchartered territory still I think for people and there's a lot of information to yet uh share so we would love to have you come back uh again absolutely I could do this every Tuesday if you uh Tuesday think about this stuff all the time it's great questions all the time awesome we would no seriously wife and kids are like stop talking about blood we understand that but thank you very much you just both been incredible than you both and we really do want to have you come back and um with that um oh people did want to know if they can have access to um the slides actually uh Jordan that you had shared that would be great if you're okay with that I can send you a short version okay then we will make that available to people so thank you for that as well and then uh Todd let's let's close it out with you yeah and then you know and if anybody wants to rewatch this in a couple of days this thing is going to be live in our library I'm it oh I am too you know it's a learning experience for all of us so uh make sure you check up the check out the pep talk library because there are just lots of episodes in there of information uh we're going to go ahead and give you the exit poll questions now uh when those pop up I'm going to give those to you after today's webinar how knowledgeable do you feel about blood clot prevention and signs and symptoms novice beginner intermediate Advanced or expert and one last question what resources would like made available to you if you guys don't mind writing in your answer we'll compile that data because we want to know we thank you so much for being with us I'll give you the results here in just a second don't forget to check out the uh Facebook blood clot support group team stop the clot we've got almost 7,000 members we're talking all day and all night so I hope you uh are able to get in and check that out as well still don't see anything quite yet okay there we go okay after today's webinar how knowledgeable do you feel about blood clot prevention and signs and symptoms novice only 4% beginner 133% intermediate 52% kind of right in the middle Advanced 27% 4% expert like you guys uh what resources would you like made available to you we don't have those answers but maybe those will be available lat on I think those are for nbca to uh decipher um and we did have somebody who would like to have a link to the aps trials as well so Jordan Jason I don't know if you have that in front of you that you could share with people otherwise please send it to us and we will make sure to share that with everyone as well yeah let me send I'll send you the best info yep Wonder thank you everybody thanks everyone thanks

Channel: stoptheclot

Views: 519

Keywords: Blood, Clot, DVT, PE, Deep, Vein, Thrombosis, Pulmonary, Embolism, Thrombophilia, blood, clotting, disorders

Id: shIzrGKp2e0

Length: 67min 55sec (4075 seconds)

Published: Fri Apr 12 2024