Is warfarin not the med for aps anymore...if not what other anticoagulants do they give?

[Charts]

Professor d Cruz said 20 years they would put you on warfarin but not now. So he recommended seeing a hematologist with a interest in aps. Just curious what else is out there in replace of warfarin? First I took it as I shouldn't be on anything as I have never had a blood clot, I was put on it by my Dr because I have involuntary movements and I wanted to see if it helps. But I think he just meant warfarin and discuss another option

[Mermaidatheart]

For me personally, being triple positive, I can ONLY take warfarin.

[RebeccaP in reply to Mermaidatheart]

At the moment I was taken off Warfrin as my consultant said they were trying to get people off it. I am now on Rivoroxaban but no checks on INR. I must admit not as comfortable or feel as safe as when I was on Warfrin. You never know how your bloods are. Anyone else on Rivoroxaban.

[Vailea in reply to RebeccaP]

I was on Rivoroxaban initially after x3 DVT 2 were associated with Pregnancy . Once the research came out and the Pharmacutical company said it was not to be used for APS I was changed to Warfarin . My INR was only 1.7 as they checked before I started Warfarin so I was lucky not to have another clot really . My range is 3 to 3.5 on Warfarin as per Dr Hughes advice . I get tested about every 2 weeks and remain stable other than when I had Covid etc l have got used to the dietary side of things and it works for me

[RebeccaP in reply to RebeccaP]

Thank you, I am not happy on Rivoroxaban as I saw it was not suitable for APS but my Cardiologist put me on it as he say it was low range APS. Since I started it I have had 3 bleeds, something which I never had before, all after a flight.

[Lure2]

I sorry but I do not understand if you have been diagnosed with APS as you have got Warfarin.

You speak of prof D Cruz who I know is an APS Specialist. I live in Sweden but have heard of a lot of people at this APS-site, who have seen him some years ago and that he is a well known Specialist of APS. Yes I have been on Warfarin as the only choice, as I am triple positive with high titres since 12 years!

Did prof D Cruz diagnose you as you say you did not have had a clot and only speak of Beta-2-Glycoprotein 1 that has also changed titres and disappeared for some time. Antibodies can disappear for some time but if you have got the real APS it can never go away. I read also that your INR was very low and then you do not know if Warfarin works for your symptoms. APS is a strange illness with a lot of different symptoms, often neurological so we do need a Specialist who works with autoimmun illnesses like this at a daily basis. Read about it.

Important to get the correct diagnose and a Doctor who knows what he is doing.

Good luck!

[Tucson]

I inject Fondaparinux daily as warfarin didn't work for me , I've had 3 strokes in total at least one of which was while taking warfarin. Had none since taking fondaparinux, it involves a lot more blood tests by the hospital , checking liver and kidney function but so far so good.

[chrissybell]

I was not compliant on warfarin so Professor Komashta (worked with Graham Hughes and Prof D Cruz) agreed 11 years ago to move me to Dabigatran, which I've been on the whole time and even been discharged by Prof D Cruz from Guys hospital as I'm so stable. But I would only do what your clinician advises (I'm not triple), but did have well over 100 PE's (multiple bilateral) 12 years ago. So, for me, every day's a blessing, as I shouldn't be here and my drugs allow me to travel the world without worrying about my INR.

[GinaD]

I have been on warfarin for 24 years. I started out triple positive but since going gluten free in 2004 I have been triple negative. But as I had multiple mini strokes prior to diagnosis I remain on warfarin with a target INR of 2-2.5. So far so good.

[BeachHaven123]

Risk Factors🍀

I think it depends on whatever else you have going on. Meaning many of us have bunches of autoimmunes and other blood disorders that add into the picture. Warfarin is not so easy to take and probably why the docs like the newer drugs

I wish there was another answer! The people I have spoken to who were trialed on another drug ended up back on warfarin. One physician at Hopkins -Stop the Clot - advised not to take anything. I think if he were one of our illustrious club here - he would have reconsidered

My latest from Michigan is a consortium with all kinds of venues like a question and answer in October. They seem to have an inkling on T cells and chemo they are excited about. Procedurally they have to determine causation, before they are able to recommend with certainty a newer drug

When I asked one physician about this; he said the problem with doing something with another drug would be “ I would not know when I was in trouble”and the prospects of damage incurred daunting

I wish I could be more helpful !

[tiredmum]

I was allergic to warfarin so I now take Phenindione. I test my inr weekly as it is so erratic with lupus.

I have a range of 3-4. I had an internal bleed last year and asked to reduce it but they said no. I haven’t had a clot but suffer from numbness, pins and needles, dizziness, slurred speech, headaches when my inr is too low. Because of these symptoms I am not suitable for other drugs like apixoban and rivoxaban.

[Zamalek in reply to tiredmum]

Hello there, What is phenindione? You still have INR tests? On Phenindione. Is it the same drug from a different farmacy with a different name. Thank you.

[tiredmum in reply to Zamalek]

Phenindione is an anticoagulant that works like warfarin. I test my inr weekly.

[Stella]

I have been on acenocoumarol for the past 15 years as I have cerebral APS. I self-test and medicate accordingly. My range is 3.5 to 4 and if I go below 3 I inject Enoxaparin. I have some permanent brain damage but if my INR goes below 3 I struggle to function at all.

[Charts in reply to Stella]

Well my struggle is a movement disorder and that's why my rheumatologist tried me on warfarin as I asked just to see if it helps. I just seen to be so much better especially when 3 or over. Problem is getting a doctor to even know that aps can cause a movement disorder. Worried I'll try another anticoagulant and my involuntary movements will get bad again

[user666 in reply to Charts]

There is no evidence that warfarin helps any symptoms other than preventing clots and the higher range INRs have also been disproven at being better for second clot protection so prescribing doctors are being far more cautious putting patients on warfarin and now frown upon “testing” it for symptom control. The risks of using warfarin often far outweigh the benefits.

[KellyInTexas Administrator]

when did Prof. D’Cruz tell you this? Had you demonstrated a clotting criteria at that time plus 2 positive lab critera approx 12 weeks apart?

I’m asking to get a basic idea, realizing we can all present slightly individually, but the basics remain the guidelines nonetheless.

[Charts in reply to KellyInTexas]

Sorry for late reply didn't even have notifications to say anyone replied back to me. I was positive for beta 2 glycoprotein 5 times 12 weeks apart. I've never had a clot, my rheumatologist agreed to start me on warfare because of my neurological problems which is a movement disorder to see if it helps. But professor d Cruz said maybe 10yrs ago warfarin would be used but not so much now.

[Tofino5]

I am triple positive with high titres, also have Sjogrens, lupus anticoagulant, Hashimoto’s, etc. I’ve had DVT and PE’s. I retired early due to severe migraines. I was on warfarin for 10 1/2 years, with very erratic INRs. My APS specialist also had other patients in my situation, and I stopped warfarin and went on Eliquis (aka apixiban). I’ve been doing well on Eliquis for over 7 years. We are all different and the treatment with warfarin may be the most common but it is not the “only“ treatment.

Just wondering, have you been diagnosed with APS?

[MaryF Administrator]

Hi Do you have an actual Hughes Syndrome/APS specialist? It is important that you have a referral to the right person where options can be discussed for the most appropriate drug for you, some if never with a clot, stay on Aspirin, please let us know if you have an appointment,a and what is advised. MaryF

[Ozchick]

I'm on LMWH as I couldn't keep a stable INR after 6 months wild variations on Warfarin. I have a blood test every 3 months for factor10A and as long as it's between 1-1.2 my Haem is happy. He keeps an eye on kidney and liver function at the same time as they can go a little over ideal range on this drug.

[Lure2]

Hope all these answers will help you.