Does anyone know if dabigatran anticoagulant would be used on lupus/APS patients, if unable to tolerate warfarin?

[kaysie]

[paddyandlin]

Hi Kaysie,

I am not sure will do a bit of digging i hope another member might be able to help

Paddy

[Hidden]

Yes Kaysie, there is a hope of this. This drug is in a class called direct thrombin inhibitors or direct Xa inhibitor. It works in a different mechanism than Warfarin and is much more stable in dosing and half life, etc. This translates into no constant monitoring INR for the patient, no dietary restrictions like Warfarin and way less drug interactions as well!!

I failed on warfarin- my INR was way too unstable. I actually tried this medicine for about a month but sadly for me it caused bad GI upset (which I have a huge tendency for without meds, but many meds do affect). I talked to some of the prescibing docs (for other conditions) and they said that the GI issues could lend to be a pproblem as it seems to affect about 5-10% of patients (no studies, just observational data).

I felt fine on it. I knew I was getting adequate bloood flow too- my hands and feet were so warm for the first time in ages! I am thinking of trialing the Xarelto (Rivaroxiban) which is a similar drug by a different maker. I think both are avail in the US now.

Here in the UK there will be a clinical trial starting soon (if it hasn't already) on xarelto for lupus and APS patients. they need to see if it is as effective and safe as data is leading them to believe.

One thing about the dabigatran- it is unstable and very sensitive in/to moisture and humidity. They come in individual pillow packs and they say dont open them until you are taking them as it affects their effectiveness a great deal. wasn't a problem for me and packaging solves that problem.

I had really hoped I would be fine on it too. My darned wonky stomach had other ideas. I have been diagnosed with ulcerative colitis well before taking this, and even vitamins mess my tummy up.

[Storky]

I was told it could be as long as 5 years before it is available for Hughes patients generally. As you say it has to go through all the trials first. Then of course there will be the problems with cost. I know for a fact that AF patients are going to have an issue getting this drug because of the cost and it is licensed for their use!

[Hidden]

The cost will actually end up being less than warfarin when you factor in the continual monitoring that warfarin use comes with. The direct Xa inhibittors are being widely prescribed in the US and I had no problems getting my doc to trial the Dabigitran or insurance to cover it, actually they were the ones to suggest it. I would have tried the Rivaroxiban by now but was leaving to come here for 6 mos and knew supply would be an issue and chose to wait until I get back to the USA. Not sure now, as I may just stay on the fragmin.

[SueLovett]

I am supposed to be on the panel of patients considered for the Dabigatran trial but was told recently that there was difficulty getting the funding to run the trial.

I am in two minds as although I have to inject Clexane daily it has been around for years so what you see is what you get. Even if I am offered the trial I think I may decline and let those who are braver be the guinea pigs.

Just a small point Kristina if you suffer from Ulcerative Colitis and stomach problems have you tried food combining? I have started it and what a differance it has made. I haven't had the terrible acid reflux for 6 weeks now. There is a very good book called 'The Complete Book of Food Combining' by Kathryn Marsden.

It is very good for all these GI problems. Hope this info is useful.

[Hidden]

Sue, the UC is under control at the moment.

I thought the funding has been obtained? Maybe someone can add to this? I will also try to find out more information about this.

If I was here for a year I would jump at the chance to try to new meds.