does anyone else have sticky blood?: I have sticky... - LUPUS UK

LUPUS UK

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does anyone else have sticky blood?

suzannah16
suzannah16

I have sticky blood because of lupus does anyone else? I got blood clots on my lungs about 18 months ago and am now on blood thinners. I don't recall seeing it mentioned on here before.

12 Replies
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I have had a big clot on my groin since last October and am also on thinners

I have sticky blood as well, luckily no clots yet! Currently on Asprin for it, I think it's more to do with genetics than Lupus specifically.

Lots of information on following:

ghic.world/

healthunlocked.com/hughes-s...

hello suzannah,

I have had this for at least 20 years and take 75mg of aspirin daily. It called Hughs Syndrome. It has its own website and lots of information can be found on the web.

I have lupus and this syndrome, it seems to go together, and if your family has a history of strokes, its probably genetic. I have been lucky so far, no clots.

Hope this has helped, best wishes x

suzannah16
suzannah16 in reply to Apple68

hi, I take apixaban, was on warfarin for a while. I wasn't told the name so at least now I can look it up thank you. luckily no one as far as I know has had a stroke in my family. I was just told lupus caused it.

I was diagnosed with severe pulmonary hypertension which eventually led to my Lupus diagnosis. I take 14 mg of warfarin daily. I amvery careful with sharp objects now! X

I have this and take Clopidogrel because I can't tolerate asprin. No clots yet as far as I know, because no-one has checked.

I have had a large clot on my brain and large clot in the groin so now on warfarin for life .

suzannah16
suzannah16 in reply to Buffy14

that sounds a lot worse than my lung clots. I hope you are well now a clot on the brain sounds really serious.

Buffy14
Buffy14 in reply to suzannah16

Yeah I am fine , the clot will always be there but they said because of the way blood is moving round it it shouldn't cause any further issues , amazingly I have never been tested for sticky blood they say they can't do all the tests because I am on warfarin . I hope you are doing ok now clots on any internal organs is serious I would have thought , as others have said there is a sticky blood community on health unlocked who may help you and give you advice .

Hi

Following a TIA I was told I had Factor V Leiden (genetic sticky blood disorder ) I now take warafrin daily and will do for the rest of my life . I also have to have injections following any abdo or major surgery . I believe there is a blood disorder connected with Lupus think it is anti philosophise ??

Antiphospholipid/Hughes Syndrome/"Sticky Blood", all the same condition.

There is a good forum here on Healthunlocked, very helpful people,:

healthunlocked.com/hughes-s...

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