Sticky Blood-Hughes Syndrome Support
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New oral anticoagulants trial

One of the questions I am most asked at the charity is when we can ditch warfarin and go onto the new oral anticoagulants such as Dabigatran.

Dabigatran has been licenced for AF in the UK but has not been trialled for APS patients so is deemed as unsafe for now.

I'm pleased to announce that the APS Trial Committee headed by Professor Hannah Cohen, has been awarded £250K to begin a two centre trial - at Tommies and UCL. The initial research will take a year but it's envisaged (depending on grant funding of course) that the whole project will take three years.

8 Replies

Hi Kate this is great news and we look forward to seeing what the results are.



Of course there are around three licensed oral ainticoag medications now in the US and more in the pipeline so the choice for AF is growing. In fact the dilemma for a lot of physicians is now what drug to choose!! Medscape had an interesting article about this very subject two weeks ago with some Doctors feeling so confused they were sticking with warfarin until a clear pathway had been shown. I guess this is always the problem when there is a host of new drugs that suddenly become available with little or no practical application in normal patient usage except trial results. Some Doctors will adopt favourites others will read the statistics before scripting but for a while its going to be a bit of a muddle over there.

Hopefully by the time our trial finishes clearer patterns will have emerged in the US and any tweaks been dealt with!

Oh and one little footnote. Dabigatran may have now been licensed in the UK but it is very expensive. I wonder how many PCT's will be allowing patients to use it against the cost of warfarin which is very cheap. I think its going to be quite awhile before anticoag clinics start swapping patients over to the new drug wholesale despite the savings they may make with less people in their clinics because initially they will have to still monitor them closely.


Yay for the new study! We need to have more and better choices.

Dabigtran is actually shown to be cheaper than warfarin when you factor in costs for testing INR, etc.

Dabigitran has been available a while now here in the US and now Rivaroxiban is, too. I look forward to following the trials and hearing how people do on this.

I was on Dabigitran for about a month and a half but had some GI issues (had them well before the meds, but they got worse). Stopped taking and was going to try again but thinking I may try the Rivaroxiban instead.


I have my doubts about Dabigitran- and Rivaroxiban from what I've read.

I am also on Atorvastatin 80 which I read CAN CAUSE CANCER AFTER 5 YEARS so I am not happy taking it. It seems that statins can be unsafe, but 'they' say that the risks outweigh the dangers???



My name is down for the Dabigatrin trial but I am having second thoughts as I am on clexane and sometimes if it's not broken it's best not to try and fix it. Heparin has been around for years and I have very few side-effects. I am aware of the higher risk of osteoporosis but have been told that this can be managed.

I won't take statins as I think the side effects outweigh the benefits. This is a personal view and not meant to influence those who choose to take them.

You can lower cholesterol with plant sterols which is what I prefer to do.

Unfortunately GP's do have a financial carrot dangled to meet prescribing targets for this drug.

Take care all x


Yes, it's not very nice to be the first guinea pigs really, but there are some brave people willing to give it a try. I think you really have to loathe the warfarin, or be intolerant of it, to go on the trial. It tends to be the younger generation who find the constant monitoring and fluctuations interfere with their lives too much.

I was at the steering committee and none of the professors could see why people would want to stay on warfarin! As the 'lay person' there, I simply said that they were scared - I thought that would be common sense ...


Completely agree Kate... Fear of the unknown. I would love to be off warfarin, but don't know if I would just side with 'better the devil you know'! Jo X


I know what you mean Jo! I'm glad I was there at the beginning of the project, even if I did have ten angry professors disagreeing with me :) Thankfully, the other two could see my point and argued the case, so they have factored in INR monitoring into the trial even though, in theory, you won't have to do this in the future if you're on the new anticoagulants.

I do hope it's successful and paves the way for other patients. It will be a few years at least until the results are known, so we're still with warfarin for now.


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