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Discussion Starter #1
Does anyone know how often you should be tested for apls after an initial mildly positive result? As labs improved, the result came back negative and the doctor stopped baby aspirin. Is it safe to assume that with normal labs that the apls result is still negative or should it be monitored from time to time to be safe?
Thanks so much.
 

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I'm not sure how long you are supposed to wait between testing, but I think you have to test positive twice before they give you a diagnosis. I tested positive, then negative. They didn't test again because they said I had to take blood thinners anyway because of my history of blood clots.

It's frustrating because I think I would rather know one way or another.

Good luck.

Nutty
 

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I believe for a DX of APS you need to test positive once then have a second test 6 weeks later and test positive again, or have a histiory of clotting or mis-carriages.

I have a DX of APS that is controlled with Baby Asprin, but my Dr checks all my bloods every 6 weeks.

I am not 100% sure on this, but I am sure one of our better equipped members with be along soon

Stephanie
 

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If you have any history of clotting issues, even thrombophlebitis, then you may want to ask your doctor about retesting that antibody just to be on the safe side. If you've had no clotting events at all, no later term miscarriages or any of the other problems associated with APS like migraine type headaches; then it's likely a little less important to keep testing unless you hope to become pregnant in the future.

For me, I had to ask my doctors to test for the anti-cardiolipins because I was planning a pregnancy in the future and had unexplained thrombophlebitis but nothing more serious that that. They tested twice, 3 months apart and both were positive at moderate to moderate/high levels and it was after the second positive that I was started on baby aspirin.

Despite the positive tests, and minor clotting issues, I still do not technically have an APS diagnosis because I have not yet had a serious clotting event.
 

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Hi there,

I'm one of those who will never know. I tested a very high positive for anti-phospholipid antibodies and, at the same time, had lots of problems with headaches, concentration problems etc. I was to be retested 6 weeks later and the rheumy duly ordered the bloodtest but the lab managed to break the tube! In the meantime I had been put on imuran (which I am told can alter results after a while) and have not tested positive since. My rheumy and neuro still want me to take apsirin (100mg daily) and often check with me to make sure I am actually taking it.

My rheumy always checks this, at every blood test, but I don't know if that is normal. They do tend to do quite a lot of bloodtests here as pretty much routine.

Katharine
 

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I believe all APS is diagnosed by the "Sapporo index" (I may have flubbed that one up), which states the patient must test positive twice, tested six weeks apart, for either anticardiolipid antibodies, lupus anticoagulant antibodies, or anti B2glycoprotien antibody --- plus --- had a vascular event (stroke, embolism, pregnancy loss, ect).

Most of the research I have read states all people will test postive for lupus anticoagulant (which has nothing to do with lupus - confusing name) at some point in their lives, it is the sustained elevation of these antibodies plus a vascular event that brings an APS diagnosis.

Because you tested high once, your rheumy is being very thorough checking you frequently again. I'd keep that doctor for sure! Most of us have to have a stroke, PE or miscarriage before anyone will look into it.

be well



 

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Which tests were positive the first time you were tested and it came back mildly positive ?

There are a variety of reasons for raised levels. Things like infection and general unwellness can cause elevations (especially mild positives), which is why they require the second positive test 6 weeks later. You also need a clinical event (clot, stroke, late pregnancy loss or multiple early miscarriages) to be dx with APS.

I would think that if you have not tested positive again, and you have not had a clot, then you are probably fine. Talk to your doctor if you are feeling concerned about this. I was initially tested, found to be highly positive twice, then the only time I have been retested was when I had a stroke.

hth

raglet
 

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I have been dx with APS. I get tested about every 6 months with the hematologist.
I was tested weekly, then biweekly when I was on heprin/lovenox injections ( I'm allergic to Coumadin). Once Iwent to plavix and then asprin, the testing decreased.
So I think it may be what symptoms and what meds you take that determine how often you need to be tested.
Joanne
 

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Both the tests should be run at intervals of at least six weeks to get a clearer picture of whether there is a chronic problem. Antiphospholids can cause a variety of problems that wouldn't constitute a formal diagnosis of APS, such as cognitive difficulties.
Many of us take a low dose aspirin as routine prophylaxis even if there is no evidence of APL ABs, given the current great concern over the very high rate of heart and arterosclerosis problems in women with lupus compared with well women, specially young women.
Some of the meds we take have beneficial slight blood thinning effects notably Plaquenil.
:)
Clare
 
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