Lupus Anticoagulant Puns

Hi, may I ask the group who has experience having positive protein s deficiency, anti-cardiolipin and drvtt results.

My doctor just said I'm high risk for a stroke or heart problems and my kidneys are showing signs of damage because of high protein in my urine tests. Also a possibility of lupus but it is not conclusive since I tested negative on so many anti tests (ana panel tests) . After that he prescribed me a bunch of medicines to prevent these problems.

As far as I understand, the Lupus anticoagulant inhibits the coagulation factors and thus increases the PTT. So if the clotting factors are inhibited shouldn’t the patient have a hypocoagulabe state instead?

Okay, so I had a calf DVT in May. Was diagnosed with Lupus and Antiphospholipid Syndrome early last month. I didn't care for the first hematologist I saw and she didn't seem to know anything about APS, so I sought out someone who would know about it. I see this new guy today. I like him (and his staff) a lot-- most empathetic, nice office I've been at in a while. And they didn't seem to mind (or be threatened by) my questions or challenges. And the hematologist did seem to know APS. Except for ... well, he told me that neither Xarelto nor Eliquis give false positives on the LA test. I kind of thought it was uncontroversial that they do. My rheum, PCP, and the previous hematologist I saw all said they do and I researched it--found multiple articles drawing that conclusion (apparently Xarelto is worse than Eliquis in this respect, but they both can mess up the test). I also gather it's a complicated test and a lot of stuff can cause false positives. (Oh, and I had a positive LA test when on Xarelto, negative after stopping thinner for 29 hours before next test.)

So, am I wrong in thinking that it's been established that the DOACs make the LA test unreliable? Or is this actually controversial? I am so confused. And a bit dismayed, as I really need guidance from a good hematologist and I am so tired of researching and seeing specialists. It feels like shooting blind. And I had to drive a ways to see this guy. AARGH! I think he retested the LA today. If it comes back positive (I'm on Eliquis) I'm going to feel like I need to bring him academic articles and ask him to tell me why he doesn't trust them.

Thanks.

Hi. I just got my results from my lupus anticoagulant tests back after 2 chemicals with PGT normal embryos. I have no idea what this means? Has anyone had this happen or can explain? Our clinic is open tomorrow, but I’m impatient lol!

PTT-LA screen was 29 (normal) DRVVT screen was 49 high

Under the DRVVT says:

DRVVT Mix Interpretation

“The corrected mixing study pattern is most commonly associated with a factor deficiency often acquired due to anticoagulant therapy. This suggests that the positive DRVVT confirm is a false positive”

Under that just says DRVVT confirm: positive DRVTT 1:1 corrected

I am sorry for the series of posts, but my situation evolved a bit. My doctor is being unhelpful and I will hurt myself by pushing her harder. (May look for new doctor.) For now, I would like people's thoughts.
Got a DVT in calf last week. Now on Xarelto. I had no clear risk factors. Then two things happened yesterday:
(1) Tested positive for the lupus anticoagulant
(2) A radiologist I saw to look at my knees due to chronic severe joint pain point blank said that he thought I likely had Lupus. He went as far as to check the back of my neck for a rash (and found one). I see the rheumatologist Tuesday.

I now have quite a few red flags for Lupus. Rash, joint pain due to inflammation in multiple joints (all arising at once), unexplained weight loss, Raynauds.

I do understand that antiphospholipid syndrome is NOT the same as Lupus and both can be had on their own. But my impression is that a high percentage of people with Lupus have APS.

I also understand that being on Xarelto leads to false positives with the LA so one positive test doesn't mean I have APA.

BUT ... it seems to me that if I am diagnosed with Lupus, have an unexplained clot, and a positive LA test, I should be switched to Warfarin as a precaution. Because I get the impression that it is not clear that the newer anticoagulants are effective for APA syndrome. Warfarin is a pain in the ass and it's unnecessary if it turns out the LA is a false positive, BUT ... I'd prefer to be inconvenienced and be on Warfarin unnecessarily for three months than get another clot (or worse) if it turns out that the LA positive is true. I feel like the signs of actual Lupus make this likely enough to switch me to Warfarin.

My doctor actually got pissed at me. And told me to stop reading stuff on the internet. I honestly understand that doctors get sick of patients doing this. She also definitely thinks I've been a hypochondriac since I got the clot. (I'm not generally a hypochondriac, but I admittedly flipped out a bit about this. But I'm not sure that my worries are actually baseless.) **But--**everything I read suggests that if a patient does have APA they should be on Warfarin. I was not just fishing for scary things on the web. My doctor admitted she didn't couldn't comment on the effectiveness of different blood thinners for APA. (That was the only bit of humility, although I do appreciate it.) I get it--maybe only specialists know this stuff.

So, long last, here's my question: Am I wrong

Hi I’m a 22F that was detected with a PE and DVT in early October 2020. I was on birth control at the time to treat existing PCOS symptoms. It was an acute DVT and acute saddle PE. I was asymptomatic and only went in for leg pain. The hospital put me on heparin overnight and let me go the next morning with 5mg of Eliquis every 12 hours.

A couple weeks later I saw my hematologist who ran some tests and said that everything came back negative except the Lupus Anticoagulant which could be a false positive due to the Eliquis. So to neutralize results he suggested that I get on a combination of warfarin/lovenox.

Since then I have tested positive for LA but have not hit the 12 week mark yet. To be noted I did not test positive for the Beta 2 Glycoprotein or the Cardiolipin Test.

My parents have said that I’m a clumsy kid so I would get hurt and trip a lot. I’ve never had issues in the past. Is there anything I can suggest to the hematologist to the because I’m convinced I do not have it.

I’ve read what it is, I think I sort of understand. I’m also reading a lot in this group from other posters who were concerned/talking about false positives?

My doctors appointment isn’t until the 12th and I’m just not sure I’ll make it that long without losing my mind from worry.

I just want to know what this means? For my body, for my life? Thank you so much!

Hi there! I went to the hospital for flashing lights in my vision and a headache in the back of my head that felt weird - the pain was unlike any of my twice-weekly migraines and was not located where they usually are. I cracked as home about going on a roller coaster the night before and he decided to do a CT with contrast.

Turns out I had a clot in my cerebral venous sinus which was "mostly occluded". They kept me for three days and I've been on Eliquis ever since. I finally saw a hematologist and tested positive for Lupus Anticoagulant, so he said I likely have Lupus or Antiphospholipid syndrome. Is anyone else here dealing with these same issues? Looks like I'll be a lifer on thinners.

Just had my third miscarriage and received some more labs back. Among them we did a Lupus Anticoagulant w rflx test. I'm curious if anyone knows if the below results are in the normal pregnancy range?

PTT-LA = 35

dRVTT = 35.5

Hello all again,

Today I got a phone call about my lupus anticoagulant coming back positive, but was given a disclaimer about how being on Xarelto may have skewed the test results to be a false positive. Im a 31 year old female. At a healthy weight of about 130 pounds, dont live a sedentary lifestyle. Nor am I an athlete or anything as have read up on thromboses extensively, dehydration etc and this test. So I do understand that could happen with the reading of results.

However I'm just racking my brain constantly, as to how I could have had been hit with two blood clots. One in 2017 a superficial one, and another this March a DVT. Doctors dont do too much to investigate, I mean the ER doctor did suggest being looked into for lupus. But I had to be the one to nudge my family doctor as my hematologist is such a dismissive jaded guy. Until I tell him of this result, maybe he will look into how I could have recurring blood clots. So what I wanted to ask, is if anyone knows from either personal experience or research that how often do these blood thinners cause false positive results, or from some literature I've read is that it could be picking up on a Factor V Lieden inhibitor and I should be tested further so I can know whether to stay on blood thinners for life. As antiphosphilid syndrome aka Hughes syndrome is quite life threatening if not on the right treatment course.

If there is anyone with any knowledge on this and you're willing to share, please do :) Thank you for reading this far and may you all be well!

Hello everyone, I am a 22F. I tested positive for Lupus anticoagulant and something else that I cannot remember the name a month after I got a PE. I was and still in blood thinners when they did the blood work. My hematologist told me that I will have to get tested again 3 months after stop taking the blood thinners to see if that caused it to be positive. My question is, has anyone been positive and then negative after the blood thinners? I am a little anxious to find out if I am I would like to know if getting false positives is common.

Hello (again). I wanted to reach out to those of you who have tested positive for lupus anticoagulant while pregnant. I am currently 12 weeks pregnant - 2 prior losses in the earlier weeks of pregnancy. I tested positive for ANA and additional things that I can’t recall off the top of my head - never been diagnosed with lupus or any autoimmune disorder. However, some recent lab work has urged my OBGYN to test me for lupus anticoagulant. Have any of you tested for this and tested positive? If so, were you still able to have a successful pregnancy? Any input or experiences you can share is Greatly appreciated. Thank you!!!!

Has anyone gone though IVF while also taking lovenox for lupus anticoagulant?

Hey everyone, I'm definitely freaking myself out over here. I was supposed to have top surgery done in January but my blood work showed that my bleeding time was too high and turns out I have lupus anticoagulant and am at an increased risk for blood clots. I've never had issues before and am relatively healthy, so it's kind of a shock to me and I have never needed treatment or medication for this. I needed clearance from a hematologist in order to get my top surgery done and they said that because of the condition and the increased risk of blood clotting that I shouldn't go through with it since it's an elective surgery, but if I decided to do so, I would need to take an injection of an anticoagulant (Lovenox) twice a day for a month after surgery.

Has anyone else experienced anything like this? I know blood clots can lead to worse things including death, but I do plan on being on the anticoagulant after surgery, but I'm pretty worried that it might not be effective enough and I'll end up getting a clot anyway. The surgery may be elective but I see it as necessary for my gender identity (or lack thereof lol)

• Age: 32
• Sex: F
• Height: 5'5"
• Weight:249.5
• Race:Caucasian
• Duration of complaint: A few months
• Location (Geographic and on body): Blood clotting disorder
• Any existing relevant medical issues (if any): Sjogren's Syndrome, PCOS
• Current medications (if any): Plaquenil, Yasmin, Gabapentin
• Include a photo if relevant (skin condition for example)

A few months ago my doctor tested me for Lupus Anticoagulant and I came up positive for it. They sent me to a hematologist who retested. To be fair, she retested 8 weeks instead of 12 weeks later, but it came up positive again.

Thankfully I have never experienced a blood clot (to my knowledge). My mother-in-law is diagnosed with a blood clotting disorder and she was telling me the other day that I have to eat no vitamin K. I read online about this condition and it just said to limit it. I have recently started a diet where I have been eating a lot of greens and this has me super worried now. I wanted to ask your advice. I emailed my doctor through the patient portal but I am reasonably sure she was going on vacation for a while and do not want to place myself at any increased risk.

Have possible RA - been on Plaquenil and Methotrexate injections for 6 mos now - just had new Rheumy take bloodwork. Has anyone had extremely high diluted prothrombin time dPT bloodwork results? Range 0.0-0.55 mine 131.5

I'm just curious because it seems to not be a very standardized set of tests.

Hi there,

I've been trying to conceive for 2 years now. After 1 year of trying to no avail, last year I had three failed pregnancies (1 at 7 weeks, 1 suspected ectopic, 1 chemical). Between losses 1 and 2, we were given the totally helpful diagnosis of "unexplained fertility" and my RE's best guess about the recurrent losses since then is "hopefully just bad luck." However, since the 3rd loss he did suggest I take baby aspirin and progesterone every month (just haven't gotten pregnant since to see whether that helps!).

Anyhow, after the 3rd loss, I wasn't willing to wait around. Because all of my miscarriages were technically chemicals in that they weren't found on ultrasounds, my RE didn't think a recurrent loss blood panel would reveal much. I disagreed, and we did our blood panel several weeks ago.

Thanks to some lab errors, our karyotype test was lost, so we had to redo it. But of the results that my RE has received, none were abnormal except my lupus anticoagulant result was "indeterminate." I also re-did that test, but RE thinks that it's unlikely to be positive the second time around. (And given that the lab lost another test altogether, I wouldn't be surprised if the inconclusive result might be attributed to lab error as well.)

From what I've read, the positive lupus anticoagulant thing does seem to be associated with later losses, like after 10 weeks or so. And I understand that a positive result falls somewhere along a spectrum of seriousness. But I wonder:

• what's the deal with an inconclusive test? have you had one?
• would being even "a little bit positive" for lupus anticoagulant possibly explain my "bad luck" so far?
• with all three pregnancies, I bled enough to assume I had gotten my period, only to find out I was pregnant a few days later. Any connection between heavy implantation bleeding and clotting issues?

I guess there's a little part of me that hopes this second test will be positive because it will at least give me an explanation and treatment for my problems. I know that's a dangerous line of thinking, but at this point I will take what I can get! Any advice or insight on these related issues would be so helpful. I've been lurking here for a while, but really appreciate learning from all of you. Thanks.

25,F,on going widespread body pain for about 2 years. I have endometriosis and lumbar spondylosis. I had an mri scan in December that came back with no more information that I already knew, no signs of ms. Other bloods he ordered are u&e, lft, fbc, coagulant screen and immunology carrier screen, crp and esr.

I just don’t know what the dr is hoping to find from these results, or whether he’s just ruling things out to diagnose me with fibromyalgia.

DVT in calf 18 months ago. Tested for lupus anticoagulant then and about 6 weeks after. So I've been on Eliquis ever since. 41 years old.

So I go for a yearly checkout and hematologist says let's test again because it can go away. And...it's negative. Meaning gone. I didn't think that it could go away? Anyone hear of this?

She thinks I can go off the meds, which would be great. I still have Factor V Leiden but that's lower risk, mainly they were concerned about the combination of that and the lupus raising my risks together.

Hello all, just wondering if anyone with lupus SLE and anticoagulant (sometimes called antipholisiphids syndrome I think?) had a successful pregnancy? I got diagnosed when I was 16 (25 now) and my doctors have ALWAYS fobbed me off, I used to see my rheumy every 6 months for blood tests and check ups but he stopped that two years ago saying my ANA was staying the same level and if I get a flare up to just go to the doctor to get steroids temporarily. Well last year I got pregnant so I went to my doctors straight away as my rheumy told me I would need blood thinner injections. My doctor fobbed me off and told me I would be fine until my first scan. I knew it wasn't right, I rang up the hospital, begging to be seen to sooner. Nothing. Two weeks later I miscarried (it was a horrific experience, the nurses didn't have a clue and even denied I was pregnant because she read test wrong).

It's pretty much scarred me for wanting to try again and I don't know what to do, I've lost faith completely with my doctor and I need advice on what I should do if I ever do try again. Thank you

ITP is an autoimmune disorder where you have an abnormally low number of platelets that causes excessive bleeding/bruising and sometimes spontaneous bleeding. However, lupus anticoagulant is on the opposite spectrum and causes blood clots. Anyone here positive for lupus anticoagulant and can shed some light on the severity of blood clot risks? I'm quite confused on how I can both have trouble clotting blood and yet be prone to blood clots. .

Hey everyone, just survived recently over 3 weeks in the hospital with PE saddle clot in my lungs at the age of 25. got the clot from a knee ACL surgery.

i am on coumadin for the time being, they think close to 6/7 months on it.

they did a blood test in the hospital to test for i think its called lupus? Its the disorder to see if im prone to getting clots. It came back positive but they told me it could be a false positive since they tested me in the hospital while i was on a lot of medicane and stuff. They want to do another test in a few months.

does this false positive test happen a lot? Been worried that i have this disorder and will have to take coumadin or other sort of blood thinners for the rest of my life. it has me so worried and i stress over it.

My fiance and I are thinking of trying for children at around 25-30. I have never had any clots and I live in Tx, USA. I do not take any medication because the doctor that found this said that it wasn't severe enough to actually take medication. He said this was because he didn't want my body to start depending on the medication before actually needing it. I'm sure you guys know this but I was told that Lupus Anticoagulant is nothing like Lupus. I have never had a healthy diet, but I am not over weight, and especially because I find it hard to find things that I will enjoy eating. Also, I do smoke but plan to stop if we start trying. I currently am on birth control but will stop at about age 24.

1. What are my chances of actually having a successful pregnancy?

2. Would it be smarter to not try?

3. How can I try to prevent getting a clot?

4. If I do eventually get a clot (whether it is due to trying to have children or otherwise), will I need to be on medication the rest of my life?

5. If so, what kind of changes would I need to make in my life?

Edit - Thank you guys for the responses. So far all the responses are very helpful. Much Appreciated!

Hello all again,

Today I got a phone call about my lupus anticoagulant coming back positive, but was given a disclaimer about how being on Xarelto may have skewed the test results to be a false positive. Im a 31 year old female. At a healthy weight of about 130 pounds, dont live a sedentary lifestyle. Nor am I an athlete or anything as have read up on thromboses extensively, dehydration etc and this test. So I do understand that could happen with the reading of results. And as well being that it is not a definitive diagnosis of lupus per se, but rather a subset that is of a clotting disorder.

However I'm just racking my brain constantly, as to how I could have had been hit with two blood clots. One in 2017 a superficial one, and another this March a DVT. Doctors dont do too much to investigate, I mean the ER doctor did suggest being looked into for lupus. But I had to be the one to nudge my family doctor as my hematologist is such a dismissive jaded guy. Until I tell him of this result, maybe he will look into how I could have recurring blood clots. So what I wanted to ask, is if anyone knows from either personal experience or research that how often do these blood thinners cause false positive results, or from some literature I've read is that it could be picking up on a Factor V Lieden inhibitor and I should be tested further so I can know whether to stay on blood thinners for life. As antiphosphilid syndrome aka Hughes syndrome is quite life threatening if not on the right treatment course.

If there is anyone with any knowledge on this and you're willing to share, please do :) Thank you for reading this far and may you all be well!