warfarin: That’s awful, in my 12 year... - Hughes Syndrome A...

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warfarin

Michaeljenkinson profile image
6 Replies

That’s awful, in my 12 year experience with warfarin I was always told if you are over your therapeutic range you should reduce your dosage down not miss it for days. Not taking any anti coagulant can harm you if at risk of clotting. If this was a recent diagnosis I can understand why the doc wants you to take a more modern medication. If however you have been on warfarin for more than a couple of years they should not be changing you without having the new medication available. Also they should be checking your INR to see if the new meds are doing what they are supposed to.

Hope you are sorted now as this was a couple of days ago,

I hope this was of some help to you

regards

Michael

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Michaeljenkinson
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bally15 profile image
bally15

i stopped taking Warfarin as I hated taking it & constant blood tests etc I refused to take it so my consultant put me on apixaban Which i take same amount each day

henyrjonze profile image
henyrjonze

In the US, advertisements for Apixaban have the caveat "Not to be used for APLS." Apparently the drug does not raise the INR adequately. I took it for one month and my cognition got fuzzy. Switched back to Warfarin and have felt fine ever since.

LindaMorrell profile image
LindaMorrell in reply tohenyrjonze

Interesting. I was told not suitable too

Ray46 profile image
Ray46 in reply tohenyrjonze

Interesting, on the other side of the Atlantic the official Apixaban information merely says "not recommended" for APS and to check with your doctor.

On the other hand it clearly states this regarding INR (my emphasis):

As a result of FXa inhibition, apixaban prolongs clotting tests such as prothrombin time (PT), INR and activated partial thromboplastin time (aPTT). Changes observed in these clotting tests at the expected therapeutic dose are small and subject to a high degree of variability.

So yes, absolutely per the documentation Apixaban will not raise INR - this is as expected (note that Heparin doesn't either). That is completely irrelevant to the real question which is whether or not it works (for APS), which we don't know yet (seems to work for some, doesn't for others, but warfarin doesn't work for everyone either).

WendyWoo50 profile image
WendyWoo50 in reply tohenyrjonze

That is interesting. I was on warfarin for five years. The whole of that time I was unstable after two hospital stays with an INR of 19 and 20. It was decided as I should try Clexane, however I reacted to that in such a way that I had golf ball size hard lumps under each injection site and extensive bruising across my whole stomach. In fact, my whole stomach was purple. My consultant felt this was inappropriate as did I. I Have Long QT syndrome which limits the drugs I am allowed to take for fear of having a cardiac arrest. After much research Apixaban seemed the only alternative. I have been on Apixaban for just over three years. I have had no further clotting ( I didn’t on warfarin either). But I have noticed changes in my brain fog and vision blurriness. In general, my migraines are under control. (I also take Candasartan at night for them) and I have good and bad days, with regards the pains in my body particularly my limbs. I was concerned as I had read that Apixaban does not protect APS patients against clots in veins and archeries, but it seemed the best option for me.

I understand from your reply that you have increased brain fog too. I’d be interested to hear anything else either on this feed or

Privately. That you feel may be relevant to me or Apixaban. Thank you for taking the trouble to reply, and I wish you well 💋 x

MaryF profile image
MaryFAdministrator

I think everybody is different to a certain extent, and it is vital to have a good conversation with your prescribing consultant, there does need to be regular monitoring. MaryF

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