Am I now triple positive?: I am lupus... - Hughes Syndrome -...

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Am I now triple positive?

WendyWoo50
WendyWoo50

I am lupus anticoagulant positive.

Take Warfarin, Asprin and at INR 3 or less Clexane too. My INR fluctuates wildly one week between 13.9 and 2.5.

I have Lupus SLE, Sjogrens Syndrome and Fibromyalgua well. (Thyroid additional tests are fine)

I also take Azathioprine and prednisone;7.5mg) plus’s other meds.

I understand once Warfarin is commenced the antibody tests can’t be relied upon

I have an excellent excellent haematologist whom I have faith in however she thinks I am now triple positive

Anyone else changed from one to three antibody positive?

She also asked me to think about stopping Warfarin for a while (min 6 weeks) and inject Clexane twice a day in its place; in hope to reset my body and stop the constant sea-saw effect I’ve been getting with Warfarin

She informed me that the other anticoagulant drugs are not showing that APS patients are protected adequately.

My questions are:

Has anyone else injected Clexane twice daily?

How did you get on?

How did you cope with the bruises?

Did you feel better on Clexane as opposed Warfarin?

And the previously asked question: Can I now be triple positive?

Please explain the effects this will have/ is having on me

Thank you Woo x 💋

10 Replies
oldestnewest

I have had to take clexane for many operations and feel much better on it.The bruises are bad but try d to different places each day and find this is less painful

WendyWoo50
WendyWoo50 in reply to Hamy

Thank you. The announcement of every 12 hours is really terrifying to me - I used to be brave but I think I’ve procedure overload now 😕

KellyInTexas
KellyInTexasAdministrator in reply to WendyWoo50

You will get used to it. And if you feel better, you can cope much better with it. Totally worth it!

KellyInTexas
KellyInTexasAdministrator

Wendy,

As you know ( we can’t stress this enough) we are not doctors, so can only tell you what we know as we understand it, and have been told by our doctors, and what we have tried ourselves.

The only antibody test that is compromised for testing after commencement of warfarin is the Lupus Anticoagulant Antibody test specifically.

B2GP1 and aCL antibodies can still be detected on a test when on warfarin. I’m checked about 12 months, or if there is a specific reason for checking.

For example, I was just checked a few weeks ago to see how Rituximab was affecting my antibody levels. ( they are still detectable at low levels after being blasted with Rituximab. Better than moderate levels!)

To address the other question you have, can you start to show positivity to other antibodies if you haven’t previously, I think is really a two fold consideration, and I believe the answer is yes.

1. The first premise is that antibodies can fluctuate. Maybe is was there off and on and it just wasn’t picked up on the day you were drawn. I’ve had this happen on multiple occasions within a week apart of draws. ( a Rheumatoligist drew for example, and then I had a hematologist draw, and one didn’t know the other was drawing- nor did I. I don’t see what all is on the order requisition. Or sometimes they want their own draws.)

2. Why couldn’t a patient then “pick up” a second or third anti body along the way?

When I had trouble forming DVT after DVT despite height intensity warfarin, my doctors sent me back to London for a consult with Professor Hannah Cohen She did test me for the LA antibody, by the way. I don’t know exactly how she did it could but she did. It was called a Taipan / Ecarin venom time test.

Therefore, she knows it’s possible to “pick up” a third one later, or have missed it previously. ( although it is not the classical presentation. )

My main question was, “ my doctors, mainly my GP and gastroenterologist, want to know at what point do we consider warfarin a failure?”

She said it was at the point- it had already failed. she was recommending that I immediately begin high intensity enoxaparin, twice daily injections.

I think, Wendy, it is worth trying in your case.

MaryF
MaryFAdministrator

Hi, antibodies can come and go, results can change from positive to negative or the other way around, however you have a good doctor here taking care of you, and weighing up what is needed. I wish you the best of luck with your new regime. The best I ever felt was injecting Fragmin, which I did for three pregnancies, apparently I need it again if I fly long haul, which I don't really do anyway. KellyInTexas has given you a very detailed and informative answer, which I agree with. With such wide fluctuations going on with Warfarin, clearly something else needs to be tried.

MaryF

HollyHeski
HollyHeskiAdministrator

Hi, I'm triple positive and have been on clexane now for 12 years. (Did trial doac but advised to go back on clexane).

Could never stabilise on warfarin.

You seem to have a very good consultant there, discuss your fears with her and put your trust in your instincts and her.

Thank you all. I’m still currently on Warfarin but the next time it drops I’m swapping!

But I’m still scared. I know I’m being stupid and I’ve tried talking to myself but it’s not helping. Once a day was bad enough but twice daily!!! 😱👀🤷‍♀️

HollyHeski
HollyHeskiAdministrator

Understandable - have you got someone that could do occasional injection for you? That way you can do other parts of the body you cant reach, like upper arms, to give your main arears a break.

Thank you. This time last year I was in Saint Thomases Hospital, London. They used heparin and injected into my upper arms. When I was told I would need to inject Clexane my specialist said in the thighs or tummy. Can you inject Clexane into the upper arms?

HollyHeski
HollyHeskiAdministrator

Not on my own, no into the arms. If hubby about, he occasionally injects into upper arms.

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