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Discussion Starter · #1 ·
Hi everyone, I was hoping someone may be able to clarify something for me.
Some of you may remember that very early on in my diagnosis (my 1st big flare) I developed a calf DVT; Ive been on warfarin ever since.
My local Reheumatologist explained the testing for APS was almost impossible whilst I was on warfarin, however when I went to St Thomas' the consultant there explained that they 'added in a factor' (not sure if this was a chemical in the actual blood sample or mathematical) which would give an indication of APS, or not as the case may be.
This test was done in July and came back negative :) Ive just had another one done at St Thomas' again and Im waiting for the result.
The consultant told me that if it comes back negative again I can come off warfarin and will be treated the same as any other DVT patient. If it comes back positive then Im on warfarin for life! :sad:

Two things:-
1) Though I will be thrilled if this comes back negative I'll be petrified of the test being unreliable and me suffering the consequences of another clotting event - possibly more serious next time.
2) I have thought that when I first flared, I went from a VERY active person one day, to immobile and bed ridden for weeks the next. So this could have been a 'natural' cause of the DVT; as in this can and does happen to people who suddenly become inactive ??

I know that the likelyhood of me having APS, especially having had a DVT is high so Im not holding my breath:eek:
Just wanted to know what you thought and if anyone could offer some advice.

Thanks for reading ;)
 

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Hi there,

I really have no idea and can offer no advice and hope that someone more usefull will be along soon to offer advice!

Let us know what happens with the results and treatment though!

Take care,
Love,
 

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Hi,

Without knowing exactly what test they've done, it isn't possible to say anything about how accurate it is, although I'm sure the doctors will be able to tell you a bit about this when you get the results.

The team at St Thomas' are absolute specialists in this field though, so you can be pretty confident that their decision will be based on the best evidence and research available, taking into consideration what is in your best interest.

Let us know how you get on,

X C X
 

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Sudden and prolonged inactivity is a risk factor for a DVT - so that could have played a role. I have heard that it is not as straightforward to test for clotting antibodies when you're on warfarin, but I don't know much more than that as to how reliable the tests are under such circumstances.

Good luck on your test results and that is definitely a question to ask your doctor(s) at St. Thomas.
 

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Hi,

Actually I just asked if you had been tested for this on your other post about the MRI :hehe:

As Maia said there is a difference when you are on Warfarin - but like her I have no idea what difference that makes to the test............

We had one lady that had to go off Warfarin to be tested for the antibodies......but I have no idea if that's what it takes or whether her doctor was being a bit cavalier! Might pay to ask some questions of your docs.

Hope you get to the bottom of it.

love
Lily
 

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Discussion Starter · #6 ·
Have an answer

Hi everyone. I emailed a US site (ASCLS consumer information) regarding my initial question and post. They got back to me today, though its pretty much what we thought, I thought I'd share this. This is what they said

" Hello, and thank you for your question. There are several tests for the anti-phospholipid syndrome (APS), and your consultant is correct, they may all be performed while you are being treated with warfarin. The "factor" she refers to is a confirmatory reagent that consists of high-concentration phospholipid. You can rely on negative results, and if any result is positive, it is necessary to repeat it after 12 weeks to determine that the condition is transient."

So Im waiting on the 2nd test now.:worried:

Thanks to everyone - wish me luck :eek:
 

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Thank you for sharing this. So when will they re test you? Let us know how you make out.

I tested a very high positive on all tests and was placed on blood thinners immediately. I was retested 12 weeks later and my results were still positive and higher the second time around.

Now over a year later, still positive and have come down a bit but not much. Hope this helps. Keep us posted and good luck.;)
 
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