Thanks for this. Fwiw, Dr. Hughes, who discovered APS/Hughes Syndrome, has said multiple times that having a thrombotic event plus positive labs were meant for classification, not clinical diagnosis. He thinks it's absurd not to dx APS if you have positive labs or else you're just waiting for someone to throw a clot, etc.
I was diagnosed and survived CAPS on the 28th of October 2023. I am still in the hospital since the 28th of October of 2023. Two months were spent in the ICU. I pray that no one gets C.A.P.S.
I was diagnosed with a Factor V Leiden double mutation when I was approximately 7-8 weeks pregnant with my son in 2005. At the time of diagnosis I had a abnormally large blood clots in my left leg and blockage of my left femoral artery. I was also coughing up blood clots and having severe pin point pain in my back. This was disregarded until I coughed up a large blood clot and showed it my nurse. Shortly thereafter ( a few hours later) I was diagnosed with multiple PE’s. Thankfully I survived these events and my son was born healthy and on time. At the end 2013-beginning of 2014 I was scheduled for lithotripsy of both kidneys due to 11mm and 13mm kidney stones. It was to be second time having a lithotripsy, the first was 2004, I believe. When running fairly standard blood tests before my scheduled surgery my doctor found abnormalities in my lupus panel. My surgery was delayed and I was referred back to my hematologist for further testing. I was then diagnosed with APS. I was already taking anticoagulants for treatment of the Factor V Leiden. I had been on warfarin since my sons birth and then changed to Xarelto in 2014. At the time my doctor was able to switch me from warfarin to Xarelto we did not know that it was ineffective in patients with APS. In 2019 I was working in metal fabrication and it required me to be on my feet constantly and my left leg, which has been plagued with pain and swelling from edema to the point of being unable to walk at times, even with compression stockings. I began to see and feel new clotting, superficially below my left knee. My doctor ordered an ultrasound, which confirmed superficial clotting, but they didn’t find a DVT at the time, and he kept me on Xarelto. The clotting continued to get worse and my ability to work became impossible as my boss continued to give me work assignments that required me to be on my feet continuously, though he was aware that I had clots in my leg. This led to me being put on disability and I had to file for workmen’s compensation. When I saw the doctor for workers Comp in March 2020 he sent me directly to the emergency room where I was diagnosed with DVT’s. The emergency room supervising doctor told me that I had to stop taking the Xarelto immediately because it failed. I was put back on a combination of warfarin and lovenox and after a follow up with my hematologist I was put on 100 ml enoxaparin sodium injections which I have administer every 12 hours. From what research I have done on the internet, and admittedly I am hampered by the fact that I understand very little about my diagnoses, I have been unable to find more 3 other instances of patients that have the same combination of blood clotting issues. In those cases, they each had an additional diagnosis of which I do not. My current (new) doctor sent my medical file to UCSF, and I had one consultation over zoom with them. They have not yet scheduled an additional appointment with me. More than anything, I would just like to understand what it means that I have these conditions. I have not found any Blood Clotting for Dummies or a Laymen’s Guide to Obscure Blood Problems. I have asked my doctors and specialists to please explain my conditions, slowly and simply, but so far I honestly feel like I’m looking for a needle in hayfield in the dark. If there is anyone out there that can dumb it down for me, I would appreciate it. I have trouble explaining my conditions to others because I don’t understand what they are and what they do. And perhaps if there’s anyone else that shares these diagnoses, I don’t believe my situation can be all that unique, what is their understanding of what living with a Factor V Leiden double mutation and APS means. I wish to understand my prognosis, as I have a 14 year old son that is scared to death that he may be an orphan someday soon.
I am also seeking the same answers as you having been diagnosed with APLS recently … Riverixaban (Xaleto) did not work for me as my blood kept clotting so now I am on warfarin… I am so confused with all of these issues with PE’s in my lungs … all of these miscarriages… it’s just horrible that no body understands the severity of these health complaints…
Oh my word!!! I cannot believe our cases are so similar!!! Trying to keep this story short! I feel your pain of the unknown. With a history of several miscarriages and infertility. In 2019 I had 3 dvts that came up in my arms. Sent for test on blood disorders. Diagnosed with double mutation of factor V. My father passed at 38. So my mother was tested. Hers came up negative. So it wasn’t a double mutation. Since I had 3 dvts, I was put on eliquis for life. Since then I’ve had severe swelling in the arms even after therapy and garments. Just getting my blood taken usually will throw a superficial clot or hematoma. 2 years ago I started with pain in shoulder blades , collar bone , chest and neck. Sent to Cleveland clinic for further evaluation. Diagnosed with bilateral TOS. Still no answers except surgery. If you see what that looks like. No thanks. I’ll manage! Last I have been having abdominal issues. Sent to gastroenterologist. Blood work showed I’m positive for ANA. Which is a auto immune disorder. I go Tuesday to follow up on what’s next. Looking for what it could be brought me here. You are the closest case I’ve seen to mine. Been searching for 4 years! 🥰 Hope you are finding the answers you need! Please, reach out! ✨✨✨
I became sick after my third pregnancy in 1983 surely you should have got it right buy now 17 years later I got a diagnosis from Dr G Hughes seronegative Antiphospholipid Syndrome I hag multiple Tia's white matter disease with Sjogren's syndrome and INR 3.5 - 4 worked wonderful for me until I had Splenic bleed and then had Heparin why have you change INR to 2-3 To be honest I have been on blood thinners for over 25 years until 4 years ago I had a Intraverbal brain bleed in the frontoparietal lobe and dx with Factor V Leiden syndrome I an completely paralysed down my left side with many other complications this is a serious illness why arew we still suffering from this horrific diseas Regards Geraldine
Thanks for this. Fwiw, Dr. Hughes, who discovered APS/Hughes Syndrome, has said multiple times that having a thrombotic event plus positive labs were meant for classification, not clinical diagnosis. He thinks it's absurd not to dx APS if you have positive labs or else you're just waiting for someone to throw a clot, etc.
I was diagnosed and survived CAPS on the 28th of October 2023. I am still in the hospital since the 28th of October of 2023. Two months were spent in the ICU.
I pray that no one gets C.A.P.S.
Thank you a lot for this opportunity and permission to listen to this presentation.
I was diagnosed with a Factor V Leiden double mutation when I was approximately 7-8 weeks pregnant with my son in 2005. At the time of diagnosis I had a abnormally large blood clots in my left leg and blockage of my left femoral artery. I was also coughing up blood clots and having severe pin point pain in my back. This was disregarded until I coughed up a large blood clot and showed it my nurse. Shortly thereafter ( a few hours later) I was diagnosed with multiple PE’s. Thankfully I survived these events and my son was born healthy and on time. At the end 2013-beginning of 2014 I was scheduled for lithotripsy of both kidneys due to 11mm and 13mm kidney stones. It was to be second time having a lithotripsy, the first was 2004, I believe. When running fairly standard blood tests before my scheduled surgery my doctor found abnormalities in my lupus panel. My surgery was delayed and I was referred back to my hematologist for further testing. I was then diagnosed with APS. I was already taking anticoagulants for treatment of the Factor V Leiden. I had been on warfarin since my sons birth and then changed to Xarelto in 2014. At the time my doctor was able to switch me from warfarin to Xarelto we did not know that it was ineffective in patients with APS. In 2019 I was working in metal fabrication and it required me to be on my feet constantly and my left leg, which has been plagued with pain and swelling from edema to the point of being unable to walk at times, even with compression stockings. I began to see and feel new clotting, superficially below my left knee. My doctor ordered an ultrasound, which confirmed superficial clotting, but they didn’t find a DVT at the time, and he kept me on Xarelto. The clotting continued to get worse and my ability to work became impossible as my boss continued to give me work assignments that required me to be on my feet continuously, though he was aware that I had clots in my leg. This led to me being put on disability and I had to file for workmen’s compensation. When I saw the doctor for workers Comp in March 2020 he sent me directly to the emergency room where I was diagnosed with DVT’s. The emergency room supervising doctor told me that I had to stop taking the Xarelto immediately because it failed. I was put back on a combination of warfarin and lovenox and after a follow up with my hematologist I was put on 100 ml enoxaparin sodium injections which I have administer every 12 hours. From what research I have done on the internet, and admittedly I am hampered by the fact that I understand very little about my diagnoses, I have been unable to find more 3 other instances of patients that have the same combination of blood clotting issues. In those cases, they each had an additional diagnosis of which I do not. My current (new) doctor sent my medical file to UCSF, and I had one consultation over zoom with them. They have not yet scheduled an additional appointment with me. More than anything, I would just like to understand what it means that I have these conditions. I have not found any Blood Clotting for Dummies or a Laymen’s Guide to Obscure Blood Problems. I have asked my doctors and specialists to please explain my conditions, slowly and simply, but so far I honestly feel like I’m looking for a needle in hayfield in the dark. If there is anyone out there that can dumb it down for me, I would appreciate it. I have trouble explaining my conditions to others because I don’t understand what they are and what they do. And perhaps if there’s anyone else that shares these diagnoses, I don’t believe my situation can be all that unique, what is their understanding of what living with a Factor V Leiden double mutation and APS means. I wish to understand my prognosis, as I have a 14 year old son that is scared to death that he may be an orphan someday soon.
Hi darci hope you are doing well .m a medical doctor with APS ...i can explain it in easy words if you want
I am also seeking the same answers as you having been diagnosed with APLS recently … Riverixaban (Xaleto) did not work for me as my blood kept clotting so now I am on warfarin… I am so confused with all of these issues with PE’s in my lungs … all of these miscarriages… it’s just horrible that no body understands the severity of these health complaints…
Oh my word!!! I cannot believe our cases are so similar!!! Trying to keep this story short! I feel your pain of the unknown. With a history of several miscarriages and infertility.
In 2019 I had 3 dvts that came up in my arms. Sent for test on blood disorders. Diagnosed with double mutation of factor V. My father passed at 38. So my mother was tested. Hers came up negative. So it wasn’t a double mutation. Since I had 3 dvts, I was put on eliquis for life. Since then I’ve had severe swelling in the arms even after therapy and garments. Just getting my blood taken usually will throw a superficial clot or hematoma. 2 years ago I started with pain in shoulder blades , collar bone , chest and neck. Sent to Cleveland clinic for further evaluation. Diagnosed with bilateral TOS. Still no answers except surgery. If you see what that looks like. No thanks. I’ll manage! Last I have been having abdominal issues. Sent to gastroenterologist. Blood work showed I’m positive for ANA. Which is a auto immune disorder. I go Tuesday to follow up on what’s next. Looking for what it could be brought me here.
You are the closest case I’ve seen to mine.
Been searching for 4 years! 🥰
Hope you are finding the answers you need! Please, reach out! ✨✨✨
I became sick after my third pregnancy in 1983 surely you should have got it right buy now 17 years later I got a diagnosis from Dr G Hughes seronegative Antiphospholipid Syndrome I hag multiple Tia's white matter disease with Sjogren's syndrome and INR 3.5 - 4 worked wonderful for me until I had Splenic bleed and then had Heparin why have you change INR to 2-3 To be honest I have been on blood thinners for over 25 years until 4 years ago I had a Intraverbal brain bleed in the frontoparietal lobe and dx with Factor V Leiden syndrome I an completely paralysed down my left side with many other complications this is a serious illness why arew we still suffering from this horrific diseas Regards Geraldine
If you want to read my APS story you can read it here www.bmj.com/content/bmj/350/bmj.h1426.full.pdf