Sticky Blood-Hughes Syndrome Support
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Good news about new oral anticoagulants in AF and venous thrombosis - (from HSF Facebook page)

NICE have just sent an alert with some good news about the NOACS - non-vitamin K anticoagulants such as rivaroxaban. A review has shown them to reduce the risk of fatal bleeding by about half when compared with warfarin.

The review only looked at patients with atrial fibrillation and venous thrombosis - APS is an acquired venous thrombosis - but it's a good start for the warfarin replacements.

We are still waiting to let you know about the results of the London Rivaroxaban in APS trial - but it will be soon! Again, this trial could only look at people with venous clots - DVTS - so anyone who has had a stroke or TIA will have to wait a while longer - sorry, not enough funding as usual :(

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Thanks we are aware of this, and soon as a forum we will have paid up accounts so we can put papers directly on here. MaryF


Great Mary!



Hi tried this from addingbrooks hospital but unfortunatly i ended up with a clot in my arm so was put back on warfarin, i am hoping somthing else will come a long soon as i am fed up with warfarin, as it does not seem to keep my INR in range .

hope it works for others.

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Hi rlupus,

As I understand Warfarin is very suitable for us with APS. Prof Hughes has often said that also.

For me it has been my lifesaver. But I have a Specialist who allows me to selftest and monitor my results. I am also allowed to keep a rather high INR, that is 3.2 - 3.8. I test at least twice a week as I need to do so as I am Lupus Anticoagulant and have all the antibodies in high titres.

I doublecheque with the hospital-lab in my vein every second or third month.

I am still waiting for an oral anticoagulant but not before it is doing its job as well as Warfarin does for us with this, in several aspects, complicated illness.

If you live in England it would not be too difficult for you to selftest. Much easier to be on Warfarin that way!! Try to talk to your APS-Specilalist and see if it is possible.

Kerstin in Stockholm


My consultant at the Hallamshire Hospital in Sheffield has talked to me about riveroxeban (not sure of spelling), but he said it needs further tests for people such as myself who have had clots (3) and bleeding on the brain. Not really sure how those tests could be carried out without using humans though! Bit tricky!!!


rlupus - have you thought about trying LMW heparin? Ive been on dalteparin now for 5 and a half years with no issues and its been great. I could not use warfarin. I was not able to use Rivaroxaban because my INR would have been over 3 and Ive had a stroke so no good for the RAPS trial. I believe that the new GAPS trial may be better but frankly Im not brave enough. I think! Id Have to know a lot about it first!! Anyway they would probably consider me too old.......👵


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