Pradaxa: Hiya, I'm on warfarin and was... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Pradaxa

Suejane profile image
11 Replies

Hiya, I'm on warfarin and was talking to the doctor today who asked why I wasn't on one of the new meds.

I've been on warfarin for 9 yrs, and it is a pain, but had noyt asked about the other drugs due to their being irreversible. Does anyone here with APS have any experience with the new medicaion?

Sue

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Suejane profile image
Suejane
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Lure2 profile image
Lure2

Hi Suejane,

I know you were before (still?) on Warfarin with an INR between 3.0 - 4.0. The oral drugs are not for those of us with an INR over 3.0 with arterial clots.

Are you still at St Thomas and see a Specialist?

Best wishes from Kerstin in Stockholm

MaryF profile image
MaryFAdministrator

Hi several on here are on the newer medications but usually under the supervision of a Hughes Syndrome/APS specialist and only if they qualify to be on them, some are not so suited, I am sure if your specialist is interested in doing this, they will inform your GP. Hidden has very good detailed information about this. MaryF

AnnNY profile image
AnnNY

I take Eliquis and Plavix. I haven't had a blood clot, just a slew of neuro symptoms. Eliquis only lasts in the body a bit longer than 12 hours. If I ever forget, I really see problems. On the other hand, not long ago I fell off a curb, and rolled around pretty good. It felt like I pulled muscles all over the place. I was expecting to see huge bruises, but no, just average bruises.

I don't see any evidence of bleeding too much, just bleeding like a regular person. Plavix is a little stronger than aspirin, with fewer stomach problems. I'm being treated by an APS specialist who is using the new drugs a lot. But I would make sure if you switch you are seeing a Doctor who is an APS specialist, and has experience with the drugs, and understands your history.

Ozchick profile image
Ozchick

I've been on Xarelto for a couple of years now and it does suit me. I take it at night at the same time. I don't know why they would change you off Warfarin if you can keep a stable INR-it's a cheap drug that works well (but didn't for me :( )

Suejane profile image
Suejane

Thank you, I was supposed that the gp suggested that I change. But I have to say that the do's and donts with warfarin are a bit of a pain. Yes my target reange is 3-4. I'm amaxed that you remember Lure2. I've not seen anyone at St Thomas's for a good few years, so not sure if I'd be eligible to see anyone, but I'd like to see someone again in case they've anything new to tell me.

Suejane profile image
Suejane in reply to Suejane

Suprised that the gp suggested it!!

Lure2 profile image
Lure2

Look for a Specialist again!

Are you Lupus Anticoagulant positive? If so it can be a bit difficult to selftest, otherwise I would stick to Warfarin and try to selftest. You are on an INR over 3.0 and should not take oral drugs yet.

I do not "remember" but read on an earlier question from you some years ago to be able to give a better answer when I know as much as possible.

Kerstin

Suejane profile image
Suejane

To be honest, I don't know. The diagnosis was made in the usa. We were skiing and I got sick. They told me that I have APS. The diagnosis came after I had multiple clots and tgey didn't initially know why.I've been interested to read people's precise diagnoses but don't know mine

Lure2 profile image
Lure2

As you are on Warfarin now you can not take Lupus Anticoagulant. Try to get a copy from that skiing resort. It should have taken 12 weeks for you to get an answer of the APS-diagnose. They should be taken twice with 12 weeks apart to be positive.

Anyway get a new Specialist and take the bloods again.

Kerstin

Suejane profile image
Suejane

Hi Kerstin, I shall certainly attempt to get another test. To my knowledge the diagnosis came from only 1 test because I was only in hospital in America 4 weeks. Having said that, I have already been told that medication will be lifelong due to the clotting episodes. So in a way, a new diagnosis might not make any difference

Lure2 profile image
Lure2 in reply to Suejane

You should of course not stop Warfarin but I think you should see a Specialist and also take the bloodtests for APS and a lot of other bloodtests (MaryF here is a Specialist of different bloodtest).

The two remaining bloodtests, Cardiolipinantibody and Beta2Glycoprotein1, could even be negative this time as many of us have sometimes positive and sometimes negative antibodies (sero-negative). There are also other autoimmun illnesses that may go hand in hand with our APS like Thyroid-illnesses and Sjögrens syndrome. If I were in your shoes i would absolutely take new tests.

Kerstin

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