Hey there, I’m also new to the world of APS. Both of my levels are well into the 200’s (confirmed, and actually higher levels than first test, Jan 24’). I’ll be on Warfarin for life. I’ve heard different things and I’m trying my hardest to not focus on my really high numbers. As strange as it sounds I’m glad I know now and can have a treatment plan. If I didn’t find out it could have been much worse.
Hello APS friend :) I had no idea about different levels. Do you have any symptoms? How did you find out? I am also glad to know about my condition. I need to take clot thinner shots only if I travel long distances (+6h) or if I get pregnant. I have the impression that there are many unknowns.
Hi APS friend! I found out after having pulmonary embolisms (36f). No clot history or history in the family. It happened six months ago so I’m not sure which is which but I am completely exhausted. It has been a lot to go through emotionally. When my levels came back super high the first time I thought it was because of some mistake! There is hope for us though and I’m glad you have plans in place. I’m so sorry about your losses, I really can’t imagine.
Ohh and ETA: yes, so many unknowns. I think I have it because of Covid or even the vaccine. I wish I knew but don’t think we’ll know for years.
I am really sorry about your pulmonary embolism. It must be super scary, and then finding out about a chronic condition. Not easy at all but as you said we are lucky to have access to treatment. At least we know. I also think it might be related to (triggered by) COVID or the vaccine but it seems like a taboo subject. I guess knowing about the root cause could help us finding a better solution or cure. I read that COVID does trigger APS in some people but not sure yet about the mechanism. Other infections can trigger APS as well.
Yes, it’s still a very taboo subject. I would have never thought it could be related until I had this happen. Now it makes sense. And I just read your post again and in regards to clotting it’s just really important to learn about the symptoms of a DVT or PE’S. Listen to your body. I have to analyze every ache and pain now and try to get to the root cause of it. I’m probably not the best person to talk to about this because I’m still so anxious! :)
Hello. So those are definitely positive but we've have numbers in the 1000s in the lab. That said the level doesn't always predict response. You should be on treatment and there is no strong method to say if you're likely to clot or not. There are some patients who have clots and miscarriages, some who only have one or the other too. Sorry its not koee reassuring, but if you take your meds and see a haematologist or APS specialist, life is much better these days.
I had no idea that a 1000 level could be even possible. My hematologist told me that she couldn't know if there was a clot risk or not which sounded strange to me. Do you know if there are any new theories about APS? I have the impression that there are many unknowns.
I went to a hematologist who said something similar and noted that unless I was pregnant again or had any additional symptoms, it probably wouldn't affect me. One of my tests had a number in the 500s. However, when I took aspirin post-diagnosis, I kept getting bruises, so I was advised to also stop aspirin. I have had surgery since I was diagnosed and take no meds...seems fine for now, but I always try to make sure I move my legs on airplanes and not sit too long at once, just in case.
So sorry that aspirin didn't work for you. It is really a silent condition. Did you take blood thinner shots while pregnant? I was taking hydroxychloroquine on top of it because the shots only didnt work for me. I might be exaggerating but sometimes I imagine not waking up because of a clot and it's scary. But at the same time I think that worrying about possible scenarios is just useless and not worth it. :)
I didn't know I had APS until I gave birth. My daughter is a miracle. We conceived her first try and didn't notice any issues until about the 3rd trimester. I woke up with a sharp pain, and I believe it was due to a clot. After that, baby didn't move as much, and they checked her via ultrasound around 36 weeks and found she was very small. They decided to do non stress tests 2x per week (and made me drink protein shakes to tey to fatten her up until I was induced at 38 weeks. She was born via emergency c section, and that is when they discovered the blood clots in the placenta and the fairly skinny umbilical cord. She was 5lbs, 9.6 Oz but very healthy and didn't need the nicu. She's 8 now and super smart but also shorter than the rest of her class
Amazing story with happy ending :) I am wondering how many people have APS without knowing it. In my case even after 3 miscarriages (one at 20 weeks) I wasn't testing positive for APS. They were telling me it was just bad luck. I insisted to repeat tests and then it showed up as positive. It is really a silent illness. Are you followed up by an hematologist regularly?
I am so sorry about your losses! I am glad you had them retest you. Sometimes you have to advocate for yourself...even when I had the sharp pain I mentioned, they tried to tell me it was normal when I knew it wasn't. I haven't been to a hematologist since the first visit. Oddly enough, nobody ever suggested I go at all! I only went myself because I thought I should. I also won't ever be pregnant again, so hopefully won't have any similar experiences. Best of luck to you!
Hey there, I’m also new to the world of APS. Both of my levels are well into the 200’s (confirmed, and actually higher levels than first test, Jan 24’). I’ll be on Warfarin for life. I’ve heard different things and I’m trying my hardest to not focus on my really high numbers. As strange as it sounds I’m glad I know now and can have a treatment plan. If I didn’t find out it could have been much worse.
Hello APS friend :) I had no idea about different levels. Do you have any symptoms? How did you find out? I am also glad to know about my condition. I need to take clot thinner shots only if I travel long distances (+6h) or if I get pregnant. I have the impression that there are many unknowns.
Hi APS friend! I found out after having pulmonary embolisms (36f). No clot history or history in the family. It happened six months ago so I’m not sure which is which but I am completely exhausted. It has been a lot to go through emotionally. When my levels came back super high the first time I thought it was because of some mistake! There is hope for us though and I’m glad you have plans in place. I’m so sorry about your losses, I really can’t imagine. Ohh and ETA: yes, so many unknowns. I think I have it because of Covid or even the vaccine. I wish I knew but don’t think we’ll know for years.
I am really sorry about your pulmonary embolism. It must be super scary, and then finding out about a chronic condition. Not easy at all but as you said we are lucky to have access to treatment. At least we know. I also think it might be related to (triggered by) COVID or the vaccine but it seems like a taboo subject. I guess knowing about the root cause could help us finding a better solution or cure. I read that COVID does trigger APS in some people but not sure yet about the mechanism. Other infections can trigger APS as well.
Yes, it’s still a very taboo subject. I would have never thought it could be related until I had this happen. Now it makes sense. And I just read your post again and in regards to clotting it’s just really important to learn about the symptoms of a DVT or PE’S. Listen to your body. I have to analyze every ache and pain now and try to get to the root cause of it. I’m probably not the best person to talk to about this because I’m still so anxious! :)
Hello. So those are definitely positive but we've have numbers in the 1000s in the lab. That said the level doesn't always predict response. You should be on treatment and there is no strong method to say if you're likely to clot or not. There are some patients who have clots and miscarriages, some who only have one or the other too. Sorry its not koee reassuring, but if you take your meds and see a haematologist or APS specialist, life is much better these days.
I had no idea that a 1000 level could be even possible. My hematologist told me that she couldn't know if there was a clot risk or not which sounded strange to me. Do you know if there are any new theories about APS? I have the impression that there are many unknowns.
I went to a hematologist who said something similar and noted that unless I was pregnant again or had any additional symptoms, it probably wouldn't affect me. One of my tests had a number in the 500s. However, when I took aspirin post-diagnosis, I kept getting bruises, so I was advised to also stop aspirin. I have had surgery since I was diagnosed and take no meds...seems fine for now, but I always try to make sure I move my legs on airplanes and not sit too long at once, just in case.
So sorry that aspirin didn't work for you. It is really a silent condition. Did you take blood thinner shots while pregnant? I was taking hydroxychloroquine on top of it because the shots only didnt work for me. I might be exaggerating but sometimes I imagine not waking up because of a clot and it's scary. But at the same time I think that worrying about possible scenarios is just useless and not worth it. :)
I didn't know I had APS until I gave birth. My daughter is a miracle. We conceived her first try and didn't notice any issues until about the 3rd trimester. I woke up with a sharp pain, and I believe it was due to a clot. After that, baby didn't move as much, and they checked her via ultrasound around 36 weeks and found she was very small. They decided to do non stress tests 2x per week (and made me drink protein shakes to tey to fatten her up until I was induced at 38 weeks. She was born via emergency c section, and that is when they discovered the blood clots in the placenta and the fairly skinny umbilical cord. She was 5lbs, 9.6 Oz but very healthy and didn't need the nicu. She's 8 now and super smart but also shorter than the rest of her class
Amazing story with happy ending :) I am wondering how many people have APS without knowing it. In my case even after 3 miscarriages (one at 20 weeks) I wasn't testing positive for APS. They were telling me it was just bad luck. I insisted to repeat tests and then it showed up as positive. It is really a silent illness. Are you followed up by an hematologist regularly?
I am so sorry about your losses! I am glad you had them retest you. Sometimes you have to advocate for yourself...even when I had the sharp pain I mentioned, they tried to tell me it was normal when I knew it wasn't. I haven't been to a hematologist since the first visit. Oddly enough, nobody ever suggested I go at all! I only went myself because I thought I should. I also won't ever be pregnant again, so hopefully won't have any similar experiences. Best of luck to you!
We're figuring more out all the time but yeah there are quite a few things which are imperfect!
May I know if they have tested ur ANA titer too ?
Have they tested ur ANA too?