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Hughes Syndrome APS Forum

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will they ever find a substitute for warfaren

mergal profile image
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mergal profile image
mergal
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Lesley_D profile image
Lesley_D

They have found one, but it is not suitable for some conditions, ..... but now I am going to have to say sorry brain fog day and I can't remember the name of the drug, but I am sure someone will be able to help out

:-)

Lesley

Skyllark profile image
Skyllark

In some countries it has not been approved

Skyllark profile image
Skyllark

Pradaxa is what it is called, you can get it here in Canada!

darceynjo profile image
darceynjo

HI i was on warfarin but couldnt tolerate it so they changed me to simthrome, the only trouble with this is that it is in very short supply x

Tablet form of Heparin.

walk1 profile image
walk1

i asked my cosultant about pradaxa although it is very good,but they have had a lot of problems inthe us,they said its safer to continue with warfarin.i have aps

Kentish_Man profile image
Kentish_Man

Dabigatran (Pradaxa in some places) is available as a substitute for Warfarin, but this also has side effects that can effect some people. You do not say why you need a substitute for Warfarin. What problems are you/have you been having ??

miley profile image
miley

I am on rivaroxaban instead of warlfarin it seems to work for me, also called calletxarelto, might be worth a look, one pill a day

GinaD profile image
GinaD

OK. First in the interest of full disclosure -- I only barely know what I'm talking about! I was an English major in college. But here goes : I understand there to be many parallel components to the clotting cascades which keep all of us animals with closed circulatory systems from bleeding to death on a daily basis. All of the drugs out there to treat ours, and other circulatory disorders, work on one of more of these components. So to ask for a substitute for warfarin -- you are actually asking for a drug which attacks an aspect of this cascade from another angle. And yes, the English major understands there are a number of them already out there. Each seem to have their own pluses and minuses. Warfarin works for me quite well. But given the huge gaps in our knowledfge about how all the hormones and enzymes and proteins fit together to create both function and dysfunction in the immune and clotting systems it certainly makes sense that we all respond to different anti-clotting drugs differenty.

So don't dismiss warfarin because you listen to those commercials on US TV saying that with pradaxa you don't have to have those blood tests or dietary changes. Of course, what they are saying about pradaxa is quite true -- you don't. But still . . .you need to find the drug which specifically works for you, and given the input into this site, warfarin and helprin-like drugs seem to be the most effective.

I am delighted to put up with the diet issues and the bi monthly blood sticks in return for not having mini strokes. But its nice to know that if my disease morphs and changes with those bizarre, and as yet unknowable fits of the immune system, that there are other options out there if the warfarin stops working on me.

Hi Mergal,

I totaly agree with Gina D.

I can say that warfarin probably saved my life. It worked with me. Although I have Lupus Anticoagulant. I rather make same changes in diet and life than a stroke och heart attack.

We are all different but don´t give up Warfarin if you do not have other real good alternative.

Some day they will find an alternative.

Kerstin

uniqueflo profile image
uniqueflo

i have been on warfarin for over 5 years and was on heparin injections daily for 2years prior to this.i have a consultant haematologist,rheumotologist,dermatologist and visit st,thomas s lupus unit twice yearly.

i had my lupus ale and aps diagnosed by professor Hughes ,while he was at St.Thomas s.

its only this year that i was told that with aps you will very rarely get a stable inr,and that the new drugs have not been tested on pas patients,and wouldn't even consider it for me.im tested wkly,and swing from 2.2 to 4.5 and back again!!i can now recognise through how I'm feeling whether my blood is thicker or thinner!!i am almost human when it is 3.3-4.does anybody else do this?

Being on warfarin is a pain,but it also gives me my life back,being careful what i eat and drink is a small price to pay i think,but do worry sometimes what long term effect is going to be.

Rivaroxaban and NOT dabigatran is being trialled in London for APS patients. I am the lay person on the committee and may soon be asking for people to help with recruitment for the trial :)

Dabigatran has shown to have more cranial bleeds while rivaroxaban only has some mild GI bleeds - both are as safe as warfarin and still prevent clots.

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