Different treatments (meds) for APS

[catlove123]

Not all doctors put patients on warfarin. There are newer, safer meds out now. THANK GOD!!! Is anyone on something more current?

[Star13]

The European Medicines Agency (EMA) (ema.europa.eu, 2019) and the Medicines and Healthcare Products Regulatory Agency (MHRA) (gov.uk/drug-safety-update, 2019) issued recommendations that DOACs should not be used for secondary prevention of thrombosis in patients with APS.

Source: Wiley Online Library

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[LindaMorrell in reply to Star13]

my doctors say one day after lots of research. APS patient might be able to take a version of the new alternative but definitely a big no no at the moment. I don’t like warfarin with all its tests but I know they all have my best interest at heart.

I would rather place safe and not take the risks of the new warfarin alternative until a type is produced and is proven to be safe

[Zombiegrl559]

There's been a start in countries like Italy and Spain where they are doing observational studies between patients on DOACs and those on Warfarin who have APS and reclotting emergence. The literature has seemed promising in a lot of ways. I'm on an Eliquis/Asprin regiment because I am severely allergic to Lovonox (facial numbness, almost necrotic looking mushroom hematomas at injection site, flu loke synptoms, low BP) and had continual severe bleeding through the nose and gums even with a good INR on Warfarin. My Hematologist has discussed other potential options we can add in the event I have a reclot including immunotherapy, another antiplatelet, or other options. I think it's important even on traditional textbook regiments to be looking at all the literature out there, even the obscure observational studies, and discussing any thoughts with your specialist or team of specialists. For a lot of APS patients, out of the box thinking is saving their lives and allowing them to lead productive ones. And for a lot, the textbook way is really good as well. A good doctor or team will listen to your needs and experiences and find a good mix.

[Pooky7]

I have been on warfarin since 2007. I also have a bleeding disorder. I have no problems being on warfarin. I have learned to balance diet— I eat keto. Lots of greens no gluten. And balance any meds or supplements I take. Life is good

[Ladydale in reply to Pooky7]

I was told not to eat too many greens as vitamin k raise the risk of further clots.

[Pooky7 in reply to Ladydale]

It’s being consistent. I eat greens daily. My INR stays the same. If I increase my vitamin K1 intake. Then I may need to adjust meds. Same if I don’t eat my greens, I need to decrease the dose. Vitamin K is very important for blood vessel health. Research and talk further with your drs. If I want to add new foods, I just check my INR more. Same with supplements or meds

[Thick_Blood]

I always ask my Hematologist, she says newer yes , safer absolutely not.. Not worth my life to TRY something that virtually all research says NOT to do.

[Ladydale in reply to Thick_Blood]

I have APS and switched to Apixaban. It's OK if you have primary APS only my haematologist said. Research previously did say not to take DOAC as it did not protect people with APS but that research has changed now. I was tested to make sure I was not APS triple positive before I made the switch. I was never in my therapeutic range on warfrin. The risk of further clots is higher if you have triple positive APS.

[Tucson]

I haven't taken warfarin for years because for some reason I had 3 strokes while taking and refused to take it any more. I take Fondaparinux which involves lots more testing of my blood to check my kidneys etc. are functioning as they should be. I don't know why Warfarin caused me the problems it did. I self tested and was always in range and was on the same low dose 3mg throughout. Some drugs just suit some better than others I guess.

[Ladydale]

Yes I take Apixaban but you have to be careful if you have APS triple positive. My heomotologist tested me to make sure I was not triple positive ,as DOACs are more risky for further clots if you are triple positive. My testing revealed I have primary APS lupus anticoagulant only so it's safe for me to take a DOAC I get a blood test extra three months as it can effect your kidneys.

[Thick_Blood in reply to Ladydale]

I guess the reason why then I can’t I am triple positive and a CAPS survivor.

[Ladydale in reply to Thick_Blood]

Yes probably

[Jianna35]

I dislike taking warfarin, weekly venous blood tests. Calcification of blood vessels and probably other side effects which they don't disclose and don't know the reason why it occurs. Unfortunately I have no choice. Nothing else works for me and even with a similar diet weekly, my INR is all over the place. I've been on warfarin for more than 30 years now.

[Lure2]

I am tripple positive with persistantly high titres and I have to take Warfarin which I did not want to do at the beginning. I have eaten Warfarin for 13 years now and I have to have an INR between 3.5 - 4.0. If I am under 3.5 I have to take a Fragmin shot. I selftest almost every day as my INR us up and down easily . I eat vegetables and change the dose accordingly. More vegs if INR is too high as the vegs can reduce the INR quicker than changing the warfarin.

We are all different with this strange illness.

I am 80 now and live in Sweden. Warfarin was my lifesaver.

[Tofino5]

I was on warfarin for 10 1/2 years, with very unstable INRs, despite diligently monitoring my diet. Self testing was not an option due to LA. I am triple positive, high titres, sjogren’s, hashimoto’s and so forth. For the last 8 1/2 years I have been on apixiban (Eliquis) and doing much, much better. My APS specialist took me off warfarin to try to address my severe and unrelenting migraines - and it turns out my body was reacting badly to warfarin. Apixiban is very good for me and one size does not fit all. I’m very grateful for the new meds.