apixaban for APS: I was put on apixaban by my... - LUPUS UK

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apixaban for APS

suzannah16 profile image
22 Replies

I was put on apixaban by my respiratory doc nearly 2 years ago for sticky blood. according to my rheumy recent studies have shown that it is not working for APS and I have to go back to warfarin. might be worth checking with your Dr's if you are on apixaban.

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suzannah16
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Roarah profile image
Roarah

Specifically triple positive patients failed on DOACs. A lot of clotting issues seemed to be arterial(12% DOAC arm v 0 % warfarin group) One therory why this happens has to do with DOACs only work against factor x while warfarin covers quite a few factors in addition to factor x. If one fails warfarin and lovenox the benefits of DOACs still outweigh the risks, 19%adverse events I believe vs 3% in the warfarin arm. But warfarin is far more prophylaxis in APS than DOACs and better at preventing ischemic strokes ( but DOACs are better at avoiding hemorrhagic stroke) in non aps patients as well in at least one afib study.

Jmiller623 profile image
Jmiller623

Budding heme/onc specialist here. We run into this a lot with consults. It’s a tricky situation but Roarah is correct. If you can tolerate warfarin then this would be the better choice. APS has a tendency to affect arteries more than other clotting disorders. DOACs are wonderful for venous clots. Since you’ve had a clot in the past and have been clot free since the DOAC, you could argue to stay on it but your risk of recurrence would likely be higher on the DOAC. Warfarin is not a good choice if you have malabsorption, liver disease or are at fall risk. As always, discuss with your rheumatologist. There are pros and cons to both but expert opinion still favors warfarin for APS.

addai profile image
addai in reply toJmiller623

Very informative, but could you please tell me what about rivRoxiban? Thanks

Jmiller623 profile image
Jmiller623 in reply toaddai

Lots of studies are currently being conducted on rivaroxiban. Company kicked themselves when they decided to dose it once a day. They did this so patients would choose it over other DOACs that are doses twice a day. Rivaroxiban needs to be dose twice a day and recent studies have found its works fairly well for APS when taken with aspirin. It definitely is not approved for APS. This may come to fruition in the next year or two.

Roarah profile image
Roarah in reply toJmiller623

I want to see more studies on dabigatran as well for it was the only DOAC out of four to reduce both ischemic and Hemorrhagic stroke better than warfarin.

Jmiller623 profile image
Jmiller623 in reply toRoarah

Not a huge market for it here in the US. Cannot be used in people with kidney disease. Very toxic. Unfortunately diabetes and chronic kidney disease are all the rage over here. In addition, APS or lupus foreshadows kidney problems for some.

addai profile image
addai in reply toJmiller623

Thank you.

Wittycjt profile image
Wittycjt in reply toJmiller623

Is there a study going through on now for this? If yes can you post the link or direct me, i would very much appreciate this. TYIA, cindy

Jmiller623 profile image
Jmiller623 in reply toWittycjt

clinicaltrials.gov/ct2/show...

Active, not recruiting meaning they’ve gathered enough subjects and are following. Trial is ASTRO-APS. Also includes rivaroxiban studies. Google NCT02295475 and papers with the study will pop up. Enjoy!

Wittycjt profile image
Wittycjt in reply toJmiller623

Thank you

baba profile image
baba

Post your question on the Hughes Syndrome “sticky blood” forum, they have a lot of knowledge. I don’t think any of the DOAC’s are approved for APS

Roarah profile image
Roarah in reply tobaba

They are not approved for first line treatment but when patients fail warfarin and heparin they are safer than no anticoagulant and/or antiplatelets.

Jmiller623 profile image
Jmiller623 in reply toRoarah

We increase INR goal or add antiplatelet medications when people fail warfarin. Highest INR goal I’ve seen is 3.5-4.5. You can also add aggrenox or clopedigrel. If catastrophic, medications won’t do anything quickly enough so in these cases, we plasmapherese which is like dialysis for the blood to remove the sticky antibodies.

Roarah profile image
Roarah in reply toJmiller623

Sorry I meant failed to get within therapeutic range due to rare genetics or liver and malabsorption issues with warfarin.

Jmiller623 profile image
Jmiller623 in reply toRoarah

Nothing to be sorry about. I am so happy to see that patients read up on this stuff. It excites me. It’s a field no one has paid much attention to. Lupus anticoagulant and APLS has always had a very special place in my heart.

Wittycjt profile image
Wittycjt

Suz, did you also have a stroke?. Apologies, i am trying to catch up new to lupus forum. I am on sticky blood here.

suzannah16 profile image
suzannah16 in reply toWittycjt

no. I had pulmonary embolisms a few years ago and my respiratory consultant put me on apixaban. he called it a new wonder drug. my rheumy recently went over my medication list and remembered seeing a recent article on a new study which showed apixaban wasn't as good as they had hoped for APS so I am waiting for an appointment to get transferred to warfarin.

Wittycjt profile image
Wittycjt in reply tosuzannah16

Thank you for replying

Mawaremi profile image
Mawaremi in reply toWittycjt

Thank for that information Suzannah16

Mawaremi profile image
Mawaremi

I was taken out of warfarin and put on apixabin in December until a month ago my consultant haematologist put me back on warfarin and claxane injection which gave me nasty reaction. My Consultant Rheumatologist sent me to X-ray and results show calcium deposits under my skin. They are like chicken skin and very hard lumps like rock and very painful. I also have open wound which is expanding quickly.... I am so scared as I have diabetes and SLE, Hypertension, to name just a few.

Has anyone been through this painful dilemma? Any recommendations?

Roarah profile image
Roarah in reply toMawaremi

I have hematomas all over my stomach from my week of bridging with lovenox still hard lumps everywhere six weeks later. The bruises are just now gone but my stomach was black for weeks. I hate lovenox! I am having a hard time getting above 1.8 INR due to exercise an a plant based diet but hope not to add the shots unless I need to have surgery in the future. I wish the DOACs would work for us :(

I told my rheumie I would partake in the next study if I could stay on plavix then the placebo or DOAC arm would not seem so risky she was excited to hear this. She and colleagues at the hospital for special surgeries in NYC are very interested in further treatment options. I am hopeful we will one day have options but not for many years it seems.

Mawaremi profile image
Mawaremi in reply toRoarah

Roarah thanks for that information. I am so worried and very depressed as for one month all the Dr I see seem to be of no help until I saw my consultant rheumatologist who sent me to do X-ray which results were scary but at least he explained that I have calcium deposits under my skin and it is difficult to treat...

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