I’m 33F and have had issues with clots for the past couple of years. I tested positive for antiphospholipid syndrome, once, but my primary care who is an NP never really seemed to say anything about it or advise me how to proceed. Is it actually that big of a deal? I’ve seen a lot of doctors and everyone is ambivalent on whether or not I need to actually take blood thinners. My insurance doesn’t cover Xarelto anymore, but I got a coupon for 30 days, after my emergency room visit last week (which didn’t turn out to be a clot, but leftover edema?) so I’m good for at least a month. I’m just pretty frustrated because professionals seem to be pretty nonchalant about this but I feel like I’ve got a bomb in my leg that could go off at any time, or something. This whole situation has left me exhausted, depressed, and hopeless. Any advice?
12 weeks apart - 3 months, not 6.
Yes, this is potentially a very big deal. You need re-testing at least 12 weeks after the 1st positive test to confirm it.
I am triple positive APS (3 different antibodies are positive, 12 weeks apart). I have had bone death in my shoulder due to micro-clotting, requiring a shoulder replacement and I have had 2 strokes.
At a very minimum, if you test positive the second time, you should be on baby aspirin which reduces the stickiness of the platelets, plus an anticoagulant.. If insurance won't cover the expensive stuff, get on warfarin (Coumadin) to keep your INR between, 2 - 3.
National Blood Clot Alliance
APS Foundation of America, Inc. (APSFA)
I am 64 and newly diagnosed with APS my hematologist said I need to take warfarin. When I first had my clot they started me on Xarelto but once it was confirmed APS said need warfarin. I also just saw a rheumatologist and he put me on hydroxychloroquine which is supposed to help so I do not clot again . I have had 2 events one in 9/2023 and again in 3/2024 so hopefully with the added medicine I am good . Also now take vitamin D since I was low . Very frustrating having this and no idea how I got it .
It is autoimmune, so you didn't do anything to get it.
I get that it is a autoimmune issue but, at 26 I had a broken ankle and multiple surgeries. Then at 40 I had my appendix rupture and spent 2 weeks in the hospital. No clotting issues , now at 64 I have APS ? All seems weird to me I think something to do with Covid . A lot of APS is women and I am male at 64 !
Mine didn't start showing up until I was 37. It began with a severely low platelet count and extreme bruising. We didn't investigate any further. I'd noticed I had lumpy lymph nodes and had those checked out. Net result after a few CTs, an ultrasound of my thyroid, and a bone marrow biopsy was that it was autoimmune. A bunch of blood tests later, I was told I had Hashimoto's thyroiditis causing low thyroid levels and undifferentiated connective tissue disease. I was also diagnosed with fibromyalgia.
Finally the blood tests for APS were done and then repeated 12 weeks later. I was told I had triple positive (3 different antibodies) APS. It wasn't made clear to me that I _really_ needed to be on something. When I broke my shoulder and the joint died, I was started on warfarin. It is a twitchy drug to control the INR. Eat too much dark greens and need a higher dose. Eat too little and need a lower dose. Take antibiotics or prednisone (I have asthma) and again need a dose adjustment. I'm about ready to see if they'll just put a port in because I get blood draws almost weekly at times.
You have to test twice to get a diagnosis.
Thanks! Sounds like I should probably request to test again, just to make sure?
If your levels were high the first time they would have automatically retested again after 12 weeks.
Huh. I’m not sure what happened then. Nobody followed up with me at all! It was just noted to me as an afterthought..
Definitely ask your hematologist but it does require multiple positive tests over time.
2 positives of the same antibody (there are 3 possible) 12 weeks apart.
I have APS, triple positive, and finding adequate medical care has been a journey because APS is not common. I have asked my (past, not current) hematologist questions and been given answers I knew were wrong. If I’ve learned anything it’s to really advocate for yourself. Like everyone else is saying, if you test positive once for APS, they should do a retest in 12 weeks to confirm. Warfarin is the preferred medicine for this condition. If I were you I would find a new hematologist and specify that you did not receive follow up labs and get those done.
Thank you. All this advice has really indicated to me I need to advocate for myself better. I live in a rural area and our healthcare isn’t the best anyway so sometimes getting what you need here is harder than it might be elsewhere.
I had the same issue. I was living in a rural area and the care I was receiving was not good. I have since moved to a city and it’s been a big difference. I know this isn’t always feasible, but if you are willing to drive a little further you might consider looking for care in a neighboring town/city. Good luck with everything.
65(M) also positive for APS. Had one DVT in 1986 and a second DVT incident with multiple clots in 2010, all in legs. I've been on Warfarin since the 2nd incident.
One thing about being APS positive is home testing is not recommended. There was a discussion about home testing on here recently. My AntiCoag clinic won't allow me but another person on here with APS is approved for it. Apparently home testing can give false readings in up to 1/3 of people with APS. As long as I am in range I'm allowed to go 4 weeks between lab tests. If I'm out of range I need to go each week until I have two in-range in a row, then 2 weeks and then 4 again. I had some issues previously and was getting tired of occasionally being out of range and needing to retest so I got my own home test (eBay) and test once per week. Unfortunately the test strips can get expensive. In my case the home test correlates very closely with my lab results (apparently home tests actually test a different clotting factor than lab draws).
My incidents were my INR getting too high and all of a sudden peeing a nice rosé due to bleeding in the kidney (always the left). Once the INR came down I'd form clots and have to pass them. Both times I was hospitalized for over a week. It was so painful - think multiple kidney stones once the clots started passing. Three years ago I had a bleed in my right elbow that impacted the median nerve. Tingling/numbness in my hand and it was hoped carpal tunnel surgery would help but not much, if any. At the ER they thought I had compartment syndrome. I literally couldn't move my arm and the pain was excruciating. I ended up having to relearn how to write again (dominant hand) and still have issues with fine motor tasks. The doctor lowered my therapeutic INR range from 2.0-3.0 to 2.0-2.5. Lot harder to stay in range! My last problem was a rectus sheath hematoma where I bled into my abdomen. I had a mild case of COVID with just coughing and lost of taste. Unfortunately, the coughing caused a bleed and I ended up in the ER again and needing several transfusions.
Reason I give my horror stories is you need to stay on top of your INR. Diet has a huge affect on your numbers. Just be consistent i.e. don't go on a spinach or banana spree all of sudden or start eating salads for every meal when you didn't eat any before. Going to the lab is becoming a pain as they've closed several labs nearby and it's now a 2-hour round trip to go. I used to pass right by a lab on my way to/from work but I've been WFH the last 4 years and just retired last month.
Lastly, if you do go on warfarin it's a very inexpensive med.
Here is a great resource for everything APS: https://medresearch.umich.edu/labs-departments/labs/antiphospholipid-syndrome-research-labs The diagnosis is a big deal, but can be nebulous - I am so sorry you are going through this (and you need a new hematologist).
I got diagnosed with it, 33F as well, and they had me on warfarin. I got another clot while on warfarin and now I’m on Lovenox for life. Currently doing two shots per day until the blood clots are gone and then they will lower me to one per day.
After my second clot I was put on lovenox shots for about a month and now back on warfarin. The shots of lovenox were just leaving me black and blue . Hopefully I can stay on the warfarin !
Sometimes I miss warfarin because I am so tired of doing shots twice a day. It’s been since January that I started, and there are no warfarin offices within an hour of me. They said I failed warfarin but imo warfarin failed me because I was within my numbers and still got more! I have been constantly worried about getting them while on Lovenox but so far it has been working for me so I’m going to stick with it. I just hate it because it’s draining, my lower stomach is filled with bruises and knots.
My doctor said I could also do injections in my upper thigh and under my arms . I would rotate areas .
I moved across country and actually have a new doctor I’m meeting tomorrow and I’m going to ask about my legs because I’m burnt out. My other doctor told me only my stomach.
I've had to go on a Lovenox bridge several times for surgeries and colonoscopies. I was told you just can't inject into a muscle but any fatty part of the body was ok. I bruised as well and got told to alternate sides of the belly and I could also use my upper underarms. I got told not to use the legs as there was too much chance of injecting into the muscle. You can also spread the shots apart even on the same side (some of us more than others!)
Unfortunately, being on warfarin is not a guarantee you won't get another clot but it does lessen the likelihood dramatically, at least that's what my doctor says. She always reminds me to remember the symptoms when I did get a DVT and to always be on the lookout for the same again.
My hospital has tons of branch offices/labs and over the last few years they've either closed the lab to patients with an MD located in that office or closed the office/lab completely. I also used to pass a lab on my way to/from work but have been WFH the last 4 years and just retired last month so that option is gone and the satellite office/lab a mile down the street won't take non-patients so It's a 2-hour round trip to get tested so I feel for you having no nearby labs.
Try injecting slowly, it helps with the bruising.
I also ice the area a few minutes before injection.
If you have APS and have clotted it is my understanding that you should be on blood thinners for life. It's unfortunate that none of the medical professionals near you are taking this serious. Maybe you can see a rheumatologist or a hematologist. It's hard because not a lot of doctors have experience with APS.
Thank you! I have seen a hematologist oncologist, so my next stop is the rheumatologist I think. The ED suggested Vascular so I will try to find someone there too…
Even my hematologist is sorta clueless about APS. It’s pretty rare.
Yeah I recommend learning as much as you can you might know more than your doctor! I had to get surgery and I advocated for myself to have a smaller window of time that I was not on blood thinners and they used heparin. I had researched it and seen what others had done and my doctor was good with it.
This is bonkers. I clotted in mid 2020 (docs think due to undiagnosed COVID at the beginning of 2020) diagnosed with triple positive APS but they only tested me once! Lovenox in the hospital for a week, then transitioned to warfarin for life. I also have ITP, so my body doesn’t know if it wants to kill my by clotting, or bleeding out lol.
Maybe you can ask about getting on warfarin. All you have to do is Google the disease and you will see a lot of information about how serious this is.
Diagnosed with APS 5 years ago at 24. I'm completely astonished at the nonchalant attitude of the doctors. I hope you're able to get that second test soon and on the right meds. My care team takes my APS incredibly seriously, and wish you the best in finding the same ❤️
I have it was diagnosed a few months ago. I was immediately referred to a rheumatologist from my hematologist. Depending on how the test resulted will reflect if you need thinners or what kind. I was sent to a rheumatologist bc my hematologist tested my lupus antibodies and were positive. (She said usually ppl with Antiphospholipid also have lupus) I have lupus, Antiphosphlipid syndrome, and may thruners. So I’m on a big dosage of blood thinners but it really depends. My sister also had Antiphospholipid syndrome but she’s only taking baby aspirin once a day because hers isn’t that bad. I’d talk to a hematologist. Btw I also got retested 14 weeks later from the initial test to make sure it was positive
I had a dvt. Xarelto for a couple of courses then testing to come off and had a positive test. Was 5 months into waiting for 6 month retest and had a very minor stroke. Now on warfarin for life. It isn’t the easier drug with testing and tuning of dosage, but it is a cheap one. I am lucky to have very good insurance through my wife’s union public teaching position. But if I recall even if I had to pay it would be tens of dollars a month not hundreds or thousands.
You need a hematologist and get tested for factors also. I have APLS plus factor 2 & 10. Because of the factors my INR must be 2.5-3.5 instead of 1.5-2.5. The factors make my blood stickier.
1.5-2.5 is almost normal blood 'thickness' without thinners. I was diagnosed with APS in 2005 after finding a huge clot in my internal jugular vein that was also causing issues with my brachial artery, I had no clue. I have been in warfarin ever since, I have had 4 strokes 2 of which I as held hostage in hospital (where they have no clue about APS). I have also had open heart surgery. So I have bridged a few times due to surgeries and having unstable INR no matter what I have done. Latest one I was at 14 but my Dr doesn't freak anymore as he knows that I can lower it within a day or two. My target range is 5-6 as I still clot at 4.5. I am about to schedule to have all my upper teeth out for dentures. All my autoimmune issues have destroyed my teeth. Thyroid cancer twice during my diagnosis, diabetes, sjorgrens, afib three leaking heart valves, circulation issues (surprise lol), high cholesterol, fibromyalgia, polymyalgia, neuropathy, gerd, IBS, colitis and sporadic gastric paralysis. I was in hospital for a week last year with ptosis and optic neuritis and paralysis cranial nerves 2 and 3, which was a great deal of fun. I had radiation treatment for my thyroid in February this year to try and kill the rest of my thyroid after my third surgery to have it removed, as it grew back after my total removal in 2005. See if you can get hold of professor Graham Hughes book as he was the one that discovered APS in 1982. Advocate for yourself as nobody else will do it. My Dr had educated himself and ALL the student Drs that have come through our clinic in the last 15 years. My highest INR was 22 and it has been 1.1 which is a person who doesn't take thinners. It's hard but medicate around your diet not the other way around. I admin a group on FB and have done for the last 10 years for APS, we have around 5k members, we also have a sister group especially for pregnancy. Just as many men suffer with this but more women are diagnosed because of pregnancy. CAPS is very scary and can be deadly. My bestie had had several episodes of CAPS and we almost lost her. I am now medically retired as my memory is so bad and my cognitive function is very bad, I just turned 57 a few days ago. I am in 17 different medications and life sometimes sucks, I have attempted to check out a couple of times, but obviously failed. Sometimes it feels like it's too much. But we all have family or people that do care about us. My sister has APS, I believe both my daughters have it. One just was diagnosed with hEDS, POTS and fibromyalgia after years of fighting and telling Drs she is in pain. She has a follow up with a neurologist because if results in MRI last week, so something else has been found, her husband has been fighting brain cancer for over a year and a half. My other daughter just had RAI in her thyroid as she has hashimotos and hyper mobility, possible Marfans syndrome. Even though they say it's not genetic I believe it is. All my father's side have passed from clot related issues apart from my dad who died at 69 from cancer and my mum passed from cancer at 34. I forgot what my point was as I have rambled But your INR should be at a target of at least 3.5 to be safe, higher if you clot. Microclotting is also an issue that needs to be investigated. My hands arms and legs are always covered in bruises and are stained brown from internal bleeding and bleeding under the skin constantly.
Please everyone stay safe and use your voices. Most medical folks have no clue and need to be educated. The UK APS foundation has pamphlets you can print out to give to your Dr to educate them. Use resources as much as possible.
Be safe, be happy and speak up. Warfarin is the gold standard in treating or helping prevent issues. Love you all 💞
Here’s a podcast episode, made by physicians and for physicians, on why false positives can show on the first test for APS. Basically, if there’s inflammation, the test can be positive for APS. It’s pretty heavy on the medicalese, but hopefully you can get some info that’s helpful.
https://podcasts.apple.com/us/podcast/the-curious-clinicians/id1514201335?i=1000643011466
Call a hematologist and let them know you had an unprovoked blood clot and see if they can get you in. Mine was able to see me the same week and neither my primary doctor or rheumatologist thought much of the positive anticardiolipin IgM test I had. I understand they can be transient so it makes sense. My hematologist had a better grasp of the disease and seriousness of it. I don't think many people have heard of the disease or know what it means. We're you feeling bad before the blood clot?
Warfarin is evidently better than the newer thinners, but can be more difficult to maintain on the INR tests, but it is important to be on thinners to keep from getting any clots.
I have APS too and I've been taking only baby aspirin, apparently it was enough to literally reverse the avascular necrosis in one of my hip, though it was too late for the other one and I had it removed last year in a total hip replacement. My doctor says that if the aspirin is enough then we don't need anything stronger. I'm being constantly monitored. Healthcare and meds are much more accessible in my country than in the US for example. Anyway. APS is a huge deal in the sense that it could literally kill you. Let me use myself as an example. Because of APS, I developed a clot that stopped blood flow to my femurs and they both started slowly dying. But if the clot had been in my brain, I'd have had a stroke. In my heart, and I'd have had a heart attack. So yeah, APS is a big deal.
I would start working directly with a hematologist if you can. I am 31F and was diagnosed at 28 when I suffered a bi-lateral pulmonary embolism out of no where. As women, hormonal changes such as menstrual cycle and pregnancy can trigger APS and clotting so it is imperative to be on thinners. I take warfarin and work with a coumadin clinic to monitor my INR. My target range is between 2.5 and 3.5 which indicates therapeutic levels of thinned blood, significantly reducing risk for clotting. Warfarin is one of the oldest blood thinners and is often very cheap with insurance. When I have an upcoming surgery or when pregnant, we switch from warfarin to lovenox injections, which is short-term heparin essentially, and I take do shots twice daily. I will also go on lovenox if my INR falls below 2.0 when on warfarin as a means to "bridge" until my INR gets above 2.0. With warfarin, you will typically find a daily dose that works for you and keeps you in range. Activity and diet can affect how it is metabolized but for me, it is such an easy drug and is just a part of my life now. I live a full life and there's nothing I can't do, so it is a great treatment! Wishing you the best!
I had a Tia a few months ago and tested positive for APS, they’ve just kept me on Plavix for now.
I have APS. Read up on APS guidelines to help feel familiar with the disease. See a hematologist for your care. My primary care doctor knows about the disease but said she wouldn’t treat it as a specialist is needed. Get a second opinion if you think the hematologist isn’t following the standard care. Depending where you live you might have better luck with a hematologist affiliated with a medical school.
30 male and just got diagnosed with APS as well. Randomly clotted in December and tested positive for APS. But the doc said you need a second positive test in 6 months. Just went and got a second positive test. It’s preferred to be on warfarin for life. Also I was sent to a rheumatologist and there they start testing you for lupus. Which is a common thing to have is positive for APS.