Given contradictory information - Hughes Syndrome A...

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Given contradictory information

gazaeee profile image
26 Replies

I've just been told by a hematologist that Warfarin does not effect the blood screen outcome. He said that Apixaban can but not Warfarin. An APS specialist advised that I should come off all anti-coagulants if I am to decided to repeat the screen.

Not sure who is correct and I find people arguing both ways online also.

Id be interested to know what others have been told?

Which if any can effect a Lupus Anticoagulant result and others? And In what way..false positives or false negatives?

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gazaeee profile image
gazaeee
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26 Replies
GillyA profile image
GillyA

My understanding from recent testing and diagnosis at UCLH in London is that it’s only the Lupus Anticoagulant which is impacted by warfarin. Some very specialist labs can even test for that - but not at most places. The other 2 antibodies can routinely be tested when taking warfarin

Lure2 profile image
Lure2

You can not test Lupus Anticoagulant after you have started Warfarin treatment for APS.

gazaeee profile image
gazaeee in reply to Lure2

Do you have anything concrete I can pass on to the haematologist? It's really frustrating going through this for tests that aren't conclusive.

nicolacrafty1 profile image
nicolacrafty1

I can't comment on the warfarin point as I didn't take that but I did have to stop apixaban for a while to have another lupus anticoagulant test or the apixaban would have changed the results, my haematologist said

gazaeee profile image
gazaeee in reply to nicolacrafty1

Did they say it would change the result to give a false positive or false negatives?

nicolacrafty1 profile image
nicolacrafty1 in reply to gazaeee

False negatives, I had to stop apixaban for 3 months before the LA test

gazaeee profile image
gazaeee in reply to nicolacrafty1

I wonder why it needed to be 3 months. Surely it doesnt stay in the system for more than a few days.

KellyInTexas profile image
KellyInTexasAdministrator

It will affect only the LA test as this is a clotting time test.

However, your hematologist might have a way to do an additional step to over ride that- and get the correct clotting g time despite being on warfarin.

Usually only very advanced APS specialty hematologists offer this. ( for example the only hematologist I’ve ever had offer this is Prof Hannah Cohen.)

gazaeee profile image
gazaeee in reply to KellyInTexas

Thank you. I honestly doubt the hospital I'm with has this advanced analytical option and probably just that my haemo isn't on point!

Given it was the LA test I returned positive for originally (while on Apixaban and maybe just started Warfarin), I'll be as equally unsure about it's result.

Do you know if they say the inaccuracy tends to be a false positive or a false negative?

KellyInTexas profile image
KellyInTexasAdministrator in reply to gazaeee

I don’t...

KellyInTexas profile image
KellyInTexasAdministrator in reply to KellyInTexas

Also, I can post on here my test results from prof Cohen. ( I was negative for antibodies that testing period, but it shows the method.

)

gazaeee profile image
gazaeee in reply to KellyInTexas

Do you happen to know if she does private consultations? I can't seem to find her other than at the NHS hospital which would mean a very lengthy referral wait.

KellyInTexas profile image
KellyInTexasAdministrator in reply to gazaeee

She does. ( well, as of May 2018 she did.)

I did hear she was limiting her private practice to only APS.

It was at the McMillan cancer center. That’s where I saw her.

Did you want me to post my labs?

I know different viper must be used when patient is on warfarin.

No warfarin in system- DRVV- dilute Russell Viper Venom

With warfarin in system- it’s an Asian viper I think- Kaolin . ( KCT) Kaolin clotting time.

gazaeee profile image
gazaeee in reply to KellyInTexas

Yes please

GillyA profile image
GillyA in reply to KellyInTexas

Yes she’s my consultant at UCLH

gazaeee profile image
gazaeee

Looking this up I came across this:

rmdopen.bmj.com/content/6/1...

and

pubmed.ncbi.nlm.nih.gov/194....

Don're profess to understand it all!

Saltydogs profile image
Saltydogs

I have heard that before, or rather read it but in my case it has not mattered. I've been on Coumadin and all three of my titers have come back triple positive for all three antibodies so that may mean that it could depend on the individual.

Ageingfemale profile image
Ageingfemale

Hiya. I see haematologist at Guys hospital in London and there they can test for the lupus anticoagulant whilst taking warfarin. Apparently they use a type of snake venom !! All amazing stuff but they test me every 6 months. Well, they did until coronavirus! The haematologist local to me, thankfully knew there was some way for it to be tested and rang a couple of pathology labs who all said no, but she persevered and checked with Guys who said yes, so she referred me to London.

gazaeee profile image
gazaeee in reply to Ageingfemale

Hiya. Thanks for replying. Where abouts are you? I did see Dr Kaur privately around 2 months ago at London bridge and he advised to come off the Anticoags to retest!

Ageingfemale profile image
Ageingfemale in reply to gazaeee

I live in Warwickshire, at my first appointment at Guys I saw Karen Breen and when I told her what the haematologist here had said, she said yes we can do the test whilst you are on warfarin.

gazaeee profile image
gazaeee in reply to Ageingfemale

Ok that is really good to know. Not sure how I'll find it if the bloods done last week will be the right way or not. Do you know what needs to be done to make them Warfarin tolerant?

Ageingfemale profile image
Ageingfemale in reply to gazaeee

Not really sure, was told it was to do with snake venom, that it is added and it removes the warfarin 🥴

Wittycjt profile image
Wittycjt

Pro Hughes answered in his q& a below

gazaeee profile image
gazaeee in reply to Wittycjt

Hiya Witty. Forgive my ignorance but are you saying the Prof has or will answer this question? Do I need to ask it in the forum being created for the session or will a moderator ask it for me? Sorry just don't know how this all works.

gazaeee profile image
gazaeee in reply to Wittycjt

How or where can I see the question and his reply?

Wittycjt profile image
Wittycjt in reply to gazaeee

Go back to the home page and scroll down -it was a post from MaryF a couple of weeks ago

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