Anyone else trying apixaban as a warfarin replacement? Opinions please.. 🤗
DOAC: Anyone else trying apixaban as a... - Hughes Syndrome A...
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Rosiek90
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Are you on this for some reason I thought you were!
I've been offered it but still doing research as they aren't confident in its ability to reduce clots in arteries
Who is offering you this?
I see in your history you have had a stroke - No DOAC has been approved yet for anyone who has had strokes or require an INR above 3.5.
You should know that the ONLY DOAC that has been approved for this disease is rivaroxaban (Xarelto). If you go to our "Pinned Posts" to the side on this page here -> you will find the paper on the RAPS trial done here at St Thomas Hospital. It says that this drug can only be used on those whose INR was at 2-3 and who had venus clots. If people needed a higher INR than 3 or had arterial clots then they could not use it until further trials took place to access its safety.
Other oral anticoags have not been properly accessed and should be discussed and considered with caution with your Doctor.
What medication are you on now and why are they looking to change?
I've been injecting 80mg of heparin for the best part of 7 years. Warfarin doesn't work. Riveraxoban didn't agree with me either.
Is the specialist up to date on these drugs and Hughes Syndrome/APS, the guidelines must be reinforced I think. MaryF
Worth noting that if Warfarin has failed (for whatever reason) there is _nothing_ else that is approved (at least for arterial clotters). Even LMWH only has approval for use in pregnancy.
Once you are into unapproved/unlicensed/off-label you are reliant on the experience of your doctors, and trial (and error).
Hello Ray46, If I understand where this topic was headed, I failed on warfarin, and other pills finally settling on daily Fragmin shots for about 4 years now. The insurance company did try to make me change, but the doctor stood up for me and defended the fact that I failed other meds and I have a double clotting threat with 1) Hughes Syn. and 2) Factor V Leiden. So doc was successful in his efforts to protect me. Here in the USA it is very costly $4800.00 per month. My insurance thankfully takes care of most of it.
~ Blue Skies To All ~
So heparin has also not been approved for arterial clots? The coag nurses told me that apixaban actually works in the same “clotting department “ as heparin
Heparin is not actually approved (at least in UK) for treating APS at all except in pregnancy (because it is the only option then). I was surprised too when I checked, but it is definitely referred to as off-label. It is approved for acute use in hospitals and for bridging patients on oral anticoagulants. I am not sure if using for topping up warfarin when INR is low is off-label or not.
And yes, apixaban (and all the new orals I think) work in similar way to heparin (factor Xa antagonist), and with similar half life in the body. If heparin works (for any given patient), then there is no obvious reason they shouldn't work, BUT they haven't been tested and approved yet.
Heparin has been tested lots, we know it works - but in pregnancy and typically with the success criteria being getting to birth ok, not based on other clotting recurrence.
You seem very knowledgeable in this Ray. It’s refreshing to hear balanced views and facts.
You’ve probably already mentioned it but what are you medicated with currently?
I really want to try the Apixaban and have not had luck with warfarin or riveraxaban. I’ve been on heparin injection for 7 year. With daily injections it actually starts to become impossible to be confident you have administered the full dose correctly as the scarring becomes extensive.
When I was on warfarin they wanted me between 2.6 & 3.
I had a normal Doppler test with the clot too
Its a hard one for you, is the heparin now not working?
I was on daily clexane and clopidogrel, plus aspirin every other day for over 10 years. Worked for me - no clots during that time.
Do you mean you have a clot now but the doppler didnt show it?
And that will probably be the reason ‘it doesn’t Work’. If you have arterial issues you needed a much high INR target, usually 3.5 but sometimes, like myself, you need as high as 4.
Is it not an option to return to warfarin with a higher INR? As already said the DOAC are approved for venous clots only.
Kelly
My Vascular surgeon said this is because when clots are fresh they are soft and compressible- and can be transparent. It’s not terribly unusual to miss a clot by Doppler ultrasound .
I wore a note to you about clean ultrasound despite a clot in the Work place- sorry! It’s below a couple entries.
Nope- sorry- I did. Reply this time correctly, as I thought I had the first time. Glitch is in system somehow- sorry!
I changed to Apixaban in November 2016 after 30 years on warfarin (which stopped working for me). Apixaban changed my life, no more brain fog and I feel so much better. In the past I’d had strokes, PEs, DVTs.
Hi Jane,
May I ask what INR were you on (therapeutic level) during those 30 years? You should not have brainfog on Warfarin.
30 years. Do you have HS/APS?
Do you have an APS-Specialist?
Good that you feel ok now but I wonder if you have got our illness?
Kerstin in Stockholm
Hi Kerstin
I have been diagnosed with APS at St Thomas London after multiple clots and miscarriage. My INR range was 2.5-3.5. The warfarin stopped working as I became immune to it and dalteparin didn’t work either I have an APS consultant in my local area. I’m in UK
Jane
Hi,
First of all I want to tell you that I am glad that Apixaban works so well for you. It must be fantastic.
Then it sounds awful that you are now immune to Warfarin.
I thought that you perhaps did not selftest and had a too low INR that made you stop the Warfarin. As you also were at St Thomas where they know our illness so well makes it difficult to understand.
I really hope that my Warfarin will last my life out. I have only had it for 6 years and I am 73 so I keep my fingers crossed it will work. I must be on an INR around 4.0 these days to stop the symptoms.
Kerstin in Stockholm
I’m sure warfarin will be fine for you. They think it may be because I was 24 when I first started warfarin and now being 54 going through the menopause caused several changes within my body.
Jane
Kerstin, I am noticing you are posting more about your warfarin...are you having some sort of difficulty with it now? I hope not, Cindy
Hi Jane, what mg of warfarin was you prescribed?
It used to vary according to my INR but towards the end I was on 8mg + 18,000 units of Dalteparin (Heparin) think this is the maximum dose of dalteparin but they couldn’t get my blood above INR 2.0 then it would suddenly spike to INR 6.0-7.5 then as soon as they gradually reduced the dose it would plummet quickly to 1.0. I felt so ill most of the time. XX
This sounds so much like my history -very interesting stuff here. accept the menopause , no worry of that with me. but the erratic INR's is - i have gone from a 2.4 on Tuesday to a 9.1 on Friday of that same week -3 days . I do have a lot of other issues , DVT clotting- Venous type and shallow vein as well , even right now am having tests done lots of trouble last few days !!my Hemo here is looking at the oral Anti's BUT i am not to keen on them .Really she isn't either BUT something will have to be done if I continue to clot . so this is interesting --Thanks keep me up on what happens. Thanks C & J
Are you on warfarin or heparin (dalteparin) or something else at the minute?
If you are referring to me Jane - I am on Jantoven { warfarin }test every 3 days because of the erratic swings.also hydroxy is a mild thinner , although when doing bridging for surgeries i stayed on the hydroxy. i have been on the Jantoven for 8 plus years. i bridge with enox but it isn't strong enough taken in the rest of my many medical issues. I was thinking in terms of asking my Hemo about maybe a combination of the both . At the present i keep 40 ml -80ML - and 120 ML syringes on hand at all times of the Enox . being a bad clotter it is used for now anyways just if I drop below 2.0.
Jane235 interesting, some on here are having this problem, thanks for sharing. Would you mind telling us where you are and who your doc is, appreciated, Cindy
I'm lucky inr was 'supposed to be' between 2-3 & was very unstable on warfarin. My GP & I decided I'd give it a go on Dabigatran (as I know the rep & trust the company) have been on it for about 3 1/2 years - so missed the rivaroxaban trial, but ST Thomas are fine with me being on it (I had multiple bilateral PE's no DVT. (So many PE's they wondered how I could breathe!) I'm very stable on it - and for this one only there is a reversal agent, but you need to do what's right for your inr levels! Good luck!
I was put on Xarelto after my P.E's. Was later diagnosed as seronegative APS. dr's wouldn't consider my changing to Warfarin, they didn't see the point. i have continued to deteriorate over the last 3yrs. So much so that my dr suggested a 2 week trial of warfarin. Nearly 5 weeks later and the difference is amazing. my dr is happily surprised and is keeping me on the warfarin. As far as I was concerned, the Xarelto may as well have been sugar pills. i had numerous clots and tia's whilst on it.
Hi suntap,
So glad Warfarin works for you so well!
What INR do you have to be on?
Kerstin in Stockholm
Hi Kerstin
My dr was reluctant to let me go over an INR of 3, but I have now convinced him to let me go to 3.5. I am not there yet, last week I was at 2.9. Thanks,
Di.
Hi suntap,
Probably not an APS-Specialist as he is so reluctan to let you go over 3.0.
You should not have TIAs anymore. Can you find a Specialist somewhere? Also selftest as it is easier to keep the INR in place and steady. Do you have all the 3 antibodies positive incl Lupus Anticoagulant?
My very best wishes to you
Kerstin
I tried riveraxaban for several months and the brain fog was catastrophic. I would be driving my daughter to nursery after going there daily for two years and forget how to get there. My heamotologist thought I wasn't getting sufficed blood flow to
My brain.
Warfarin wouldn't settle. I got to 2.6 INR on 13mg and the all of a sudden shot up to 3.8 they put me down to 12 and I went to 2 INR so gradually moved me up to 17 mg and my INR was getting lower and got back down to 1.6 on the 17mg
HollyHeskiAdministrator
I think all these answers prove a point - we are all so different!
The key is to have a good specialist that we can trust and that is prepared to look outside the box and treat us as individuals - to find what works for 'me'!
🙌🏼
I think we all want answers so this condition isn't so unpredictable but I agree with you Holly. All of our experiences are very different and need different treatment
I changed to Rivaroxiban after 11months on warfarin - prescribed for APS after a second DVT ( 20 years apart) Whilst on warfarin I felt very depressed, my body shape changed but I didn’t gain weight; my skin became extremely dry. After two weeks on Rivaroxiban I returned to my normal shape and my skin is better than it’s been for years. I was a bit nervous about changing to Rivaroxiban as it’s a fairly new drug. I have an appointment with a specialist booked at the London Bridge Hospital to discuss this further.
When is your appt marion4711 ?
It was a week ago. I made the appointment because I wanted to fully understand Hughes Syndrome and the treatment options. I’m taking Rivaroxiban and feeling very well on it. For the first time in my life I have pink and warm fingers and toes. Also my skin has stopped being dry. Fingers crossed I can carry on taking it with no problems.
I have taken Eliquis (apixaban) for two years with no major side effects. I do have a nosebleed occasionally but nothing serious. I can stop taking it for 5 days at a time if I have to have an injection for pain. Overall, it is a much easier med than Warfarin, which requires monthly or more blood draws to check on it. I was diagnosed with A-Fib 7 years ago and I am 77 years young.
Hello I am 73 years young and I have APS and not A-Fib as far as I know!
I must tell you that you can not compare with the members here on our site who are positive to Antiphospholipidsyndrome. We have all very thick blood and need a steady and strong Anticoagulation drug and for some of us the oral anticoagulants are not good enough.
Also we can never stop taking anticoagulation not even for 5 days. I know you have A-Fib. If you have a nosebleed then you do not have too sticky blood to worry about.
I would like to hear if you have taken blood-tests for our illness APS though? If you do not have APS I am sure Eliquis is the best drug for you as your Doctor has given you that drug probably for your A-Fib-issues. I know nothing about your illness though.
My very best wishes to you!
Thank you for your response tss1hsc, it sounds as if Apixaban works well for you.
I appreciate all of the opinions my question has generated as a healthy discussion is helpful to all of us.
Have you experienced many clots with your condition?
My issue is the high risk I have to arterial clots. I had a stroke due to a brain clot when I was 19 and have tried many different blood thinners since but always end up being put back on daily heparin injection.
I have been offered apixaban with the understanding that I’d be taking a “chance” because it isn’t licensed for APS yet. This is because it’s only known, so far, for treating Venus clots.
My heamotologist Is not ruling out that it would work, they are just not familiar enough with it yet.
I do like to hear people’s experience on it to help my knowledge of the drug, so thank you 🙂
Hi Rosie90,
This is a rather old question and I have only answered those people who has answered on your question about Apixaban. My answer yesterday was meant for tss1hsc.
No I am not on Apixaban at all. My Hematologist here would never allow me to use that drug as that anticoagulant-drug is not enough for my APS. I am triple positive with Lupus Anticoagulant since 2002 and need an INR of around 4.0. What antibodies are you tested for when having your diagnose? Are you primary APS or do you also have other autoimmun illnesses that very often accompany our APS?
I do suggest you get in contact with a Specialist of autoimmun illnesses as we need such a Doctor who has had patients like us before and because of that knows how to treat us. I say this after having read a lot of APS-histories from so many members during the years. This is a question for a Specialist of APS!
I think a Specialist of APS would suggest you should stay on LMW Heparin or try Warfarin but then try to selftest as it is easier to follow the INR-changes. Are you Lupus Anticoagulant?
It is a rare and
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