Scarlett Posted September 10 Share Posted September 10 Anyone familiar with this blood disorder? My specific question is this— is it an autoimmune disorder? 1 Quote Link to comment Share on other sites More sharing options...
Rosie_0801 Posted September 10 Share Posted September 10 I believe it's genetic. It runs in my family, so I was told to test for it. Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted September 10 Share Posted September 10 It’s genetic. It makes you hypercoagulate (form clots). It matters if you are homogeneous or heterogenous for it re: treatment but either form makes you more likely to have deep vein thrombosis. It’s just a matter of degree of likelihood. It’s also something they tend to test you for if you have multiple miscarriages, fwiw. 1 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted September 10 Author Share Posted September 10 But is it an autoimmune ? My dh’s mother has it and a couple of his siblings. Dh and another sibling tested negative but have some weird stuff going on. They are testing Dh for a bunch of AI. Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted September 10 Share Posted September 10 It’s not an autoimmune disease. An autoimmune disease is when the body attacks and destroys itself. This is just a funky protein that your body produces. That said, it’s in all of the panels that my diagnosing rheumatologist did in the initial workup—same with when she checked me for Lyme and other stuff. Diagnosing autoimmune stuff is often a diagnosis of exclusion and much as it is inclusion. They will be able to rule out a lot of serious stuff to be able to narrow down what is actually going on. Did this explanation help? I can try again if it didnt. 2 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted September 10 Author Share Posted September 10 6 minutes ago, prairiewindmomma said: It’s not an autoimmune disease. An autoimmune disease is when the body attacks and destroys itself. This is just a funky protein that your body produces. That said, it’s in all of the panels that my diagnosing rheumatologist did in the initial workup—same with when she checked me for Lyme and other stuff. Diagnosing autoimmune stuff is often a diagnosis of exclusion and much as it is inclusion. They will be able to rule out a lot of serious stuff to be able to narrow down what is actually going on. Did this explanation help? I can try again if it didnt. Yes it helped. Dh has had 2 PEs and something on his ankle MRI is looking fishy for autoimmune . Another sibling is struggling with weird symptoms… it just all seems related somehow. Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted September 10 Share Posted September 10 Siblings are the closest genetically—not surprising if they have similar genetic mutations (like the clotting thing) and similar genetically inherited autoimmune stuff. 1 Quote Link to comment Share on other sites More sharing options...
KSera Posted September 10 Share Posted September 10 33 minutes ago, Scarlett said: Dh has had 2 PEs and something on his ankle MRI is looking fishy for autoimmune . Another sibling is struggling with weird symptoms… it just all seems related somehow. Do I recall his first PE was prior to 2020? There’s a significant risk increase of clotting issues including PE for least a year after a Covid infection. Quote In the first week after a COVID-19 diagnosis, the risk of such venous problems was 33 times higher. By the third and fourth weeks after diagnosis, the risk was still about eight times higher. And between 27 and 49 weeks later, the risk was still 1.8 times higher than in somebody who had never had COVID-19. But if his first one was prior to Covid, that’s probably not the whole story but still may indicate a predisposition. Just wanted to put that on the radar because a lot of physicians are still pretty slow to make the post Covid connections. 1 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted September 10 Author Share Posted September 10 Just now, KSera said: Do I recall his first PE was prior to 2020? There’s a significant risk increase of clotting issues including PE for least a year after a Covid infection. But if his first one was prior to Covid, that’s probably not the whole story but still may indicate a predisposition. Just wanted to put that on the radar because a lot of physicians are still pretty slow to make the post Covid connections. Yes both were prior to Covid. One in 2009 and one in 2017. Both after surgeries and the second one after precautions were taken. Quote Link to comment Share on other sites More sharing options...
City Mouse Posted September 10 Share Posted September 10 It’s a gene thing not autoimmune, but it doesn’t mean that someone couldn’t have both. My DH and several of his siblings (if not all) have it. Both of our kids have also have the mutation. My DH had his blood clot in his early 40’s and has been on Warfarin ever since. Some of his sibling have never had a clot. Other siblings didn’t get a clot until much later in life. Neither of my kids have had clots. 2 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted September 10 Share Posted September 10 12 hours ago, Scarlett said: Yes it helped. Dh has had 2 PEs and something on his ankle MRI is looking fishy for autoimmune . Another sibling is struggling with weird symptoms… it just all seems related somehow. The autoimmune clotting disorder is called APS—antiphospholipid antibody syndrome (sometimes Hughes Syndrome or sticky blood). There is kind of a formula for determining a diagnosis because some people have antibodies but never have an “event” (clot, stroke, miscarriage, etc.), and some people have events even with antibodies below the worrying threshold. It is important to know if APS is behind the clots because the only evidence-based treatment is lifelong warfarin therapy (though the subtype that is only relevant to pregnancy has different guidelines). I have two family members with APS. We have tons of clotters, but of the rest who have been tested for a variety of clotting disorders, none have tested positive—we might have something yet to be discovered or just really bad luck. Sometimes when someone clots, they test a whole panel of stuff, and other times, they pick and choose what to test. Other than for family history, sometimes testing is selective because anticoagulants can make specific tests harder to interpret, so if the person doesn’t have blood drawn before treatment, it’s not as accurate. It is possible to have multiple clotting disorders also! It’s actually not that uncommon. Stop the Clot (National Blood Clot Alliance, and North American Thrombosis Forum are excellent resources. Stop the Clot has a podcast and webinars and personal stories on their FB page. They have a new patient guide that is quite nice—if they have it as a .pdf, I will try to come back and put it in this thread. 2 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted September 10 Share Posted September 10 https://www.stoptheclot.org/new-patient-resource-guide-2/ Here is a link to download the guide. They do take contact information, but it should be easy to unsubscribe. 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted September 10 Share Posted September 10 11 hours ago, Scarlett said: Yes both were prior to Covid. One in 2009 and one in 2017. Both after surgeries and the second one after precautions were taken. Can I just say that it warms my heart when I hear that people with a history or significant risk factors have precautions before surgery? It should be more common than it is! I’m glad your DH chose to take precautions—it could’ve been a worse event (more or larger clots) if he had not. 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted September 10 Share Posted September 10 I should probably add that APS can be a standalone condition or occur with other autoimmune diseases. Primary APS is when it occurs alone (and maybe also when it is the first AI condition to emerge). It’s called Secondary APS when another autoimmune disorder is involved. Sometimes it matters if you are looking at literature involving treatment or risk of specific complications. Sometimes patterns emerge by which type it is, and that can trickle down to treatment and guidelines. And, the obstetric version can be its own thing for some people while others have the whole kit and kaboodle, not that your DH has to worry about that. 2 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted September 10 Author Share Posted September 10 1 minute ago, kbutton said: Can I just say that it warms my heart when I hear that people with a history or significant risk factors have precautions before surgery? It should be more common than it is! I’m glad your DH chose to take precautions—it could’ve been a worse event (more or larger clots) if he had not. Dh took himself off warafin in about 2010 because he hated it. When he had his total knee replacement in 2017 because of his previous PE immediately after surgery they started him in 10 days of Lovenox. A week later he had one on the way to work in the city. He drove himself to the ER. After that he went on Pradaxa for life. It is just too risky. 1 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted September 10 Author Share Posted September 10 9 minutes ago, kbutton said: Can I just say that it warms my heart when I hear that people with a history or significant risk factors have precautions before surgery? It should be more common than it is! I’m glad your DH chose to take precautions—it could’ve been a worse event (more or larger clots) if he had not. It is pretty complicated. Dh is the only of his siblings and mom to have anything like a PE but he is negative for factor 5. The doctors ears perked up when he heard about the history of PE and factor 5 in the family. Then mentioned an AI as a possibility. That is why I wondered if factor 5 is an auto immune. Quote Link to comment Share on other sites More sharing options...
kbutton Posted September 10 Share Posted September 10 18 minutes ago, Scarlett said: It is pretty complicated. Dh is the only of his siblings and mom to have anything like a PE but he is negative for factor 5. The doctors ears perked up when he heard about the history of PE and factor 5 in the family. Then mentioned an AI as a possibility. That is why I wondered if factor 5 is an auto immune. Yeah, they don’t necessarily explain themselves! I hope they test for APS. If he has it, they might leave him on pradaxa. Not everyone tolerates warfarin, and while it’s evidence-based for APS, a few people can’t get their INR stable, are allergic, etc. Quote Link to comment Share on other sites More sharing options...
kbutton Posted September 10 Share Posted September 10 25 minutes ago, Scarlett said: immediately after surgery they started him in 10 days of Lovenox Oh, lots of times they do this prior to surgery also—it can help! Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted September 10 Share Posted September 10 I have factor V Leiden. So does dd1. BUT DD2 doesn't and is forming blood clots anyway. Because there are a few d8fferent autoimmune causes also for blood clots. And I am struggl8ng w this now. I was on warfarin because of my history with anti phospholipid antibodies. My hemotologist put me on Xarelto. I believe I have gotten new blood clots since then. But the doct9r who actually did ultrasound hasn't responded to my own doctor's request for notes. 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted September 10 Share Posted September 10 12 minutes ago, TravelingChris said: I have factor V Leiden. So does dd1. BUT DD2 doesn't and is forming blood clots anyway. Because there are a few d8fferent autoimmune causes also for blood clots. And I am struggl8ng w this now. I was on warfarin because of my history with anti phospholipid antibodies. My hemotologist put me on Xarelto. I believe I have gotten new blood clots since then. But the doct9r who actually did ultrasound hasn't responded to my own doctor's request for notes. This remind me…there is a webinar for that. I haven’t watched it, but it’s here: 2 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.