Pradaxa

[Suejane]

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

[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 Administrator]

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]

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]

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]

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 in reply to Suejane]

Suprised that the gp suggested it!!

[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]

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]

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]

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 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