Hi Elise,

I also tested positively for the LA on two occasions, but both times I was tested I was on Coumadin, which I have been told can cause a false positive. I will likely be tested in June if I can go off of the Coumadin temporarily. If I test positively for LA when I am off of the Coumadin, I will need to be on Coumadin therapy for life.

I've been told by two different hematologists that having the LA means that you will be on Coumadin for life, so I am surprised that your doctor is telling you it doesn't warrant Coumadin treatment. The LA makes us more likely to clot, which puts us at risk for PE. I'd definitely seek a second opinion if you are not comfortable with what your doctor told you.

There is another support group on here for people with LA - it's called Antiphospholipid Syndrome, which is basically the fancy name for lupus anticoagulant. Good luck to you!

Question "Q3" answer your question regarding testing. Yes you can be tested while on Coumadin as long as a "Confirmatory Test" was done as discussed by Dr. Moll. the confirmatory test adds an extra step to the test sample for those on anticoagulant medication. If this is not done, a false negative can be read if the patient is on Coumadin or Heparin:

http://www.fvleiden.org/ask/21.html

Per the National Institute for Health (NIH), here is some information regarding lupus anticoagulant:

Lupus anticoagulants are usually found in persons with autoimmune diseases, such as systemic lupus erythematosus (SLE). They may also be found in persons who take certain medications, including phenothiazines, phenytoin, hydralazine, quinine, amoxicillin, and birth control pills. Persons with inflammatory bowel disease (Crohn's disease and ulcerative colitis), infections, and certain tumors may have lupus anticoagulants.

Some people have no risk factors for this condition. In some cases, it is linked to an increased risk of blood clots and may be the cause of recurrent miscarriages

A second opinion from a thrombophilia specialist would be adviseable. Considering you did have a PE, "if" it is determined by your physician that you have Lupus Anticoagulant, more then likely you will be considered a candidate for life long Coumadin Theraphy.

Regards,
Tom in Connecticut

Hello Erieli and Tom,
Many thanks for the response..I will seek out a second opinion..right now I feel so confused and scared. I guess my hematologist feels that this is a single predisposing factor as all other tests were negative and he ran a lot of other blood clotting tests ( I had 14 tubes of blood taken) He also mentioned that being on coumadin is very risky and that the risks of having another PE due to only a single postiive test is not likely.

I have to get a grip and try to relax. I have been very careful since I have been off of coumadin since June 08 to drink plenty of fluids, avoid vit K enriched foods and thin my blood with garlic pills, drink pure pomegranite juice and also take a liquid vitamin with a lot of B12 (I read that B12 deficiency has been linked to PE development). Thanks again for caring to respond...I really appreciate it.

Hi Elise and Erie,

I have Lupus Anticoagulant too. I am on Coumadin for life.

Do you both have any other symptoms with regards to Lupus Anticoagulant?

I am adopted and I am pretty sure my birth mother had this. Did anyone else in either of your families clot?

Pam

Hi Pam,

I only tested positive for the lupus anti coagulant test as everything else was normal. Did you have other positive tests besides the lupus one? My hematologist said that coumadin is not warranted for this one single factor? As far as I know, no one had this although my father died of a heart attack at age 61.
I am confused now as many people say that with the lupus anticoagulant positive test, they have been placed on lifelong coumadin.
Thanks for responding...Elise

Elise,

There are I think seven genetic tests and all were run on me. I only tested positive for Lupus Anticoagulant. Everything else I was negative for.

I would get a second opinion. I don't want you to feel scared and think the minute you go off it you will clot. However, I was told I have to be on it for life.

Now, whether I would clot if I went off I don't know. I was told with this disorder there is a 30% reoccurence rate. I think it is a similar rate for all these clotting disorders though.

Your doctor does not sound like he is up to date with the latest research. I am sorry as I wish we did not have to be on it...

Pam





I am thinking of getting a second opinion to see if I still have the Lupus Anticoagulant.

PaM

I tested negative for LA, but I have high Factor VIII and have been on a maintenance dose of Lovenox for a while. I was talking with my doctor about whether I have been subtherapeutic, or whether a maintenance dose is enough (because of how lousy I feel all the time plus the likelihood I clotted again while on it), and she said she didn't know about Factor VIII, but (in her words), "I know they have done studies on people with LA, and they've shown they can't be on a maintenance dose or they will likely clot again. They must be at a therapeutic dose." (I think the study was done with Coumadin.)

I don't want to scare you, but I respect this doctor more than any others I've seen throughout this process. She is smart and thorough, and I value what she says. So please get a second opinion, just to be sure.

Hi,

I am so worried. I have been off the coumadin since June 08 and thus far have been fine but now with all the information, I am wondering whether my hematologist is being thorough?. He apparently is chief of hem. dept and his reputation serves him as very thorough. He said that my chances of reoccurence is btn 5- 10%. I will try to meet with him again and also get a second opinion. In the mean time, I have been so nervous....I better calm down although it is really hard to do. Does anyone have studies that pertain specifically to a positive lupus anti coagulant test?

Elise, this is from Lab Tests Online, which goes into detail about different lab tests:

2. How is a lupus anticoagulant treated?
No treatment is required if someone does not have any symptoms. If blood clots do occur, patients are usually anticoagulated with heparin (which is injected under the skin or given intravenously (IV)) followed by oral warfarin (coumadin) therapy for several months. Higher than usual doses of warfarin may be required, and the treatment may need to be continued for a longer period of time. In someone with the lupus anticoagulant, the risk of recurrence of both arterial and venous thrombotic episodes is relatively high. Some patients may need to be on long-term (even life-long) oral anticoagulation.
(Full link is: http://www.labtestsonline.org/understanding/analytes/lupus_anticoagulant/faq.html

This is from the Factor V Leiden.org page, with Dr. Stephen Moll (Retired Navy refers to him/this organization often):

High risk of recurrence:We know that 5 roups of patients have a particularly high risk of recurrence. These are patients with
antiphospholipid antibody syndrome (= repeatedly clearly positive anticardiolipin antibodies or lupus anticoagulant),
antithrombin III deficiency,
combination of heterozygous factor V Leiden plus heterozygous prothrombin 20210 mutation, homozygous factor V Leiden, cancer.
One can make a good argument for keeping these patients on long-term full-dose coumadin after their first clot.
Full link: http://www.fvleiden.org/ask/09.html

This is from a 2006 Pathology and Lab Medicine paper, which talks about how often the test should be repeated, plus refers to long-term use:

HOW OFTEN SHOULD THE LUPUS ANTICOAGULANT ASSAY BE REPEATED IF THE RESULT IS POSITIVE?

Although positive lupus anticoagulant results can be transient after infection, persistently positive lupus anticoagulant results are considered to indicate a high risk for recurrence of venous thrombosis in children and adults.28 Therefore, testing should be repeated. If the lupus anticoagulant result is repeatedly positive, after 6 weeks, then a diagnosis of antiphospholipid antibody syndrome should be considered, according to the Sapporo criteria.29 Although these criteria are intended to assemble a uniform patient group for clinical studies from different institutions, they were validated for clinical studies and give some clinical guidance as well.30 According to the most recent publication of the consensus statement, lupus anticoagulant should be present at 12 weeks from the initial finding in order to classify the condition as antiphospholipid antibody syndrome. The authors of this statement emphasized that the period of 12 weeks is an expert opinion and should be validated in the future.31 Experts have recommended indefinite anticoagulation in patients with antiphospholipid antibodies and thrombosis.32 However, there is no consensus as to whether anticoagulant therapy should be continued indefinitely despite the disappearance of lupus anticoagulant.
Full link: http://arpa.allenpress.com/arpaonline/?request=get-document&doi=10.1043%2F1543-2165(2007)131%5B885:LAAQAA%5D2.0.CO%3B2

The article above references a journal article (32) when it talks about indefinite use of anticoagulant. The link to the PDF of that journal is: http://www.chestjournal.org/content/126/3_suppl/401S.full.pdf+html

The excerpt from that journal that is relevant to LA is:

Important information on the long-term clinical course of patients with DVT was provided by a prospective cohort study of Prandoni and colleagues.57 This study evaluated a total of 355 consecutive patients with a first episode of VTE who received anticoagulant treatment for 3 months and were then followed up for up to 8 years. The cumulative incidences of recurrent
VTE at 2 years, 5 years, and 8 years were 17.5%, 25%, and 30%, respectively. The presence of cancer or thrombophilia (eg, deficiency of antithrombin, protein C, or protein S, or the presence of lupus-like anticoagulants) was associated with an increased risk of recurrent VTE (hazard ratios, 1.7 and 1.4, respectively).
The presence of transient risk factors, such as surgery or recent trauma, was associated with a decreased risk of recurrent thromboembolism (hazard ratios, 0.4 and 0.5,
respectively). The cumulative incidences of PTS at 2 years, 5 years, and 8 years were 23%, 28%, and 29%, respectively. The development of ipsilateral recurrent
DVT was strongly associated with an increased risk for PTS (hazard ratio, 6.4). These results provide further support for the inference that treatment for 3 months is
sufficient in patients with a first episode of DVT secondary to a transient risk factor, but that a longer course of treatment is required for patients with continuing
risk factors for VTE.

Elise, I also want to say that your hematologist may have an excellent reputation, but unless he is an expert in exactly what you need, it doesn't really matter, in my opinion. And many hematologists with excellent reputations specialize more in the oncology side of things these days, according to my doctor. What you need is someone who has seen and treated many, many cases of LA.

Also, be aware if you bring any of these or other studies to your hematologist that he may refute them, or find flaws with them. Research can be presented in many different ways, and to us, they look like fool-proof evidence. But physicians can dissect these and may find that the research was weak, or the research population small, etc., and they wouldn't necessarily be wrong. But based on others who have LA and shared their opinions, plus the research that I listed, it seems highly likely that there is evidence you should be on long-term anticoagulants, at therapeutic doses.

If your hematologist disagrees, remember that you don't need to convince him. Go somewhere else and get a second or even third opinion, and then base your decision on that. You HAVE to be your own advocate with this. I have learned the hard way (misdiagnosis, mismanagement of anticoagulants, high probability of re-clotting) that reputations mean NOTHING if they're not aware of the research that specifically affects YOU. I know it sucks to have to manage this yourself, and it shouldn't have to be this way, but there is just too much that is unknown about clotting out there among the "experts". So take care of yourself, get different opinions, look at the research, and decide for yourself.

Susan, thank you for digging up all that information. I've been following this discussion (thank you for bringing it up Elise) because I tested once positive (7/08) and then followed with a negative LA test (10/08 after being on the Warfarin) My hemotologist has me on Warfarin for a year (began 7/08) and I was in to see him the other day.

While my doctor has an excellent reputation as well, I am very much realizing his practice is, as Susan suggested, leaning more toward the oncology end and not so much the treatment of clotting disorders. He told me the other day that my medicine had no affect on me whatsoever, other than to thin my blood, and any symptoms I was having of feeling bad were strictly from lack of oxygen....which I completely disagree with.

Elise, I would tend to agree that getting a 2nd and even 3rd opinion will not only give you more answers but will help to alleviate some of your anxiety. It is difficult to know who and what to trust. You know your body. If you've been feeling good, then the testing couldn't hurt. If it's a choice between the anxiety and "always wondering" and taking the Coumadin for life...well, that is a decision that only you can make. My hemotologist wants to run the LA and other genetic testing again in June. With my most recent visit, I've decided I'm going to seek a 2nd opinion with those tests results...simply for my own peace of mind and to be sure this doctor isn't glossing over something that could or should be a warning. I say this because they never did determine why I got the PE to begin with.

I think because we have all faced this "you could have been a goner" thing and are continually reminded how quickly things can go wrong, we focus on that. Most people don't think that way, wouldn't you agree? There are times when it is so exhausting worrying about everything that COULD happen that I wish I could turn my brain off. It's during those times I have to take a deep breath and remind myself that what will be, will be. By all you've said it sounds as if another test by another doctor may be all you'll need to ease your concerns. HUGGIN' you and please let us know what you decide to do.

Hi Susan,

I can't express how grateful I am for your information..I will definitely seek a second opinion and also ask to be seen by my hematologist so he can further explain why he made the decision not to medicate me...I just got an e-mail from him revealing the result. This past couple days have been extremely difficult (feeling of impending doom) I have to be strong and push forward..once again, thank you for your effort in writing back to me. Elise

Hi Cynde,
THanks for your response. I feel the same way like you regarding worrying about the what if's..it is so draining. I also am so frustrated as I am finding it very difficult to find another specialist..I live in Ontario,CA and lately our health care system is getting overbudened and specialists are prioritizng cases...I will have to pay out of pocket and go to a private health clinic to get some answers as I need some closure on this..some answers..I need a doctor who genuinely cares to respond and not leave me hanging for weeks with no reply...I have been feeling extremely fragile the past couple days and I want to be strong ( I have a husband and little boy ). Anyhow, I am really thankful for all your kind words..God Bless, Elise

Elise, I'm glad that some of the information helped. I think what is frustrating is the whole percentage game that seems to be behind these genetic conditions.

For example, in the last journal item I mentioned, the study was done on participants who were on anticoagulants for 3 months. What if you're on it for six months, like you were? Does that help your chances/your statistics more? And where is the cut-off with the statistics as far as determining who should be on anticoagulants for life? In that same example, recurrences happened with 30% of the participants eight years later (if I'm reading that right). Is that considered very high, extremely high, sort of high? And if you're in the 70% that doesn't have a recurrence, it doesn't mean anything, but it means everything if you're in the 30% group.

So even though there seems to be a consensus among different doctors that those with positive LA results should be on it for life, it doesn't mean you will clot tomorrow, the next day, or next year. And that always has to be weighed against the risk of a bleed while on anticoagulants (which with LA must have been taken into account, and maybe that's where the statistics come in? Maybe the statistics skew toward the risk of clotting vs. the risk of bleeding, and that's why it's recommended?)

It's like what Cynde says, where we're always thinking of what could happen. Since what could happen already happened once, it's easy to think it's going to happen the minute we're off the anticoagulants. And statistically, it doesn't seem to play out that way. But it's a numbers game, a risk-benefit ratio, and it would help tremendously to have knowledgeable doctors to guide us through that.

I haven't been lucky with that, and have had an extremely difficult recovery. I'm still on Lovenox, 18 months later, and there is confusion among my doctors about whether I should be or not. To say I have anxiety about this would be an understatement. But I don't mean to pass any of that anxiety on to you, and I hope that I haven't. It just struck me in doing research that LA is one of those conditions that there seems to be a consensus for staying on anticoagulants, compared with some other conditions, and I would wonder why (or what research or statistics your doctor is looking at) that would have him think otherwise.

Hi, I tested negative for lupus in the hospital. But I am now learning that mycoplasmas may be the causitive factor in various kinds of blood chemistry-clotting and if one eradicats the mycoplasma, the risk of clotting disaappears. Mainstream medidcal people have not generally recognized this yet - though many scientific studies point to this. hugs, clairejean