Anyone else on apixaban

[mariamoo1]

Are you still suffering blood thick days, and blood thin days? To keep it short, we all know the Sufferings of the thick and thin blood days with APS. And all the suffering. But I would just like to know from you other people out their, how YOU are actually coping taking apixaban. Maybe it’s convenient, as you no longer have to go for an appointment to get your IRN checked, a lot. Maybe it’s cheaper for your healthcare provider, your employer. Maybe you feel it fits in more with your work and family life patterns. I just want to know your honest feelings.

[daisyd]

Hi I don’t think it is recommended with sticky blood ( antiphospholipid syndrome / hughes others will explain better

I am on Warfarin and self test

[mariamoo1 in reply to daisyd]

Sorry I should have said, I tried warfarin for 6 months, and it nearly killed me, as my INR was going up and down like a to yo yo. From 2 - 14 within days. I was for ever being sent an ambulance and being admitted to hospital for emergency treatment, or being given vitamin k.

[daisyd in reply to mariamoo1]

Oh dear I am sorry, someone else will be able to give you a better answer I am sure, good luck

[MaryF Administrator]

Hi, are you stable on it? Have you tried Fragmin/Heparin injections? Sorry I can't be more helpful, never been on your current medication. MaryF

[KellyInTexas Administrator]

I have been in your shoes.

I am somewhat unstable on warfarin, but not horribly so.

I clotted through it at alarming rates- DVT’s every 10-12 weeks.

I was switched to clexane, but the hematologist ( not a true APS expert ) dosed every 24 hours instead of every 12 , and additionally refused to add an anti platelet. I clotted within two weeks.

Back to warfarin. Back to clotting.

My GP wanted me to see Prof Hanna COHEN in London. ( APS specialty hematologist.) She suggested changing back to clexane, high intensity, but every 12 hours and adding an anti platelet.

I flew back home to Texas with my plan.... but hold on...

Before we tried this, my Specialy USA APS Rheumatoligists had one trick up her sleeve...

Apixiban. Just because it would be so much easier than the injections. The trick was to dose it much higher than the standard Apixiban dosing. I was dosed at 10mg am and 10 mg pm ( I only weighed 112 ) and add a little clopidogrel, and add a statin.

Some patients are NOT put on a dose this high- I have had arterial involvement involving the brain so mine was a little higher. Some patients are NOT a candidate for this. ( if they had a stroke with no warning for example.)

It works best for patients who can self judge their “sticky” symptoms and adjust up or down the Apixiban, as it’s out of system in 12 hours. So if you feel great, maybe only 7.5 mg. If experiencing word finding symptoms, migraine, balance issues, tingling lips, face... bump next dose to 10.

So you can see, if someone had no symptoms at all, and suddenly had a stroke- this would not be safe. Or, if someone had symptoms but couldn’t accurately or consistently correlate them to a low INR, this would not be safe. To be honest- I do fall in that last sentence, but I’ve NEVER had a bleed. ( however, there is always a first time for everything. )

With all that said, we tried it. Stupidly over our American Thanksgiving and while traveling out of state. Boy was I over confident. ( I just wanted to be a normal family and I finally had freedom away from the lab- not reliant on blood draws!)

I texted with my doctor who prescribed. I was violently ill with sticky blood symptoms. I went to 12.5 and 12.5. We left to come home... I was at 15 and 15... DVT’s, migraines, seizures, hallucinations, and TIA. No bleeding in brain. ( CT confirmed.)

Blood was so thick it would not flow into vial for a blood draw.

I switched immediately to Hannah Cohen’s Clexane method. It was much better for me, but I will tell you I do better on warfarin than anything else.

I’m back on warfarin. It’s a love hate relationship.

[Wittycjt in reply to KellyInTexas]

😳😖geez

[Wittycjt]

I have nothing but good hopes for you Mariamo1

[Ozchick]

I was similar to Kelly in Texas and yourself as far as crazy results on Warfarin - up and down like a YoYo. Was on Rivaroxaban for a few years but then Bayer put out a letter to Doctors not to use any DOAC's with APS and am back with Clexane injections twice daily+Aspirin (Low dose 100mg).

[Tofino5]

I’m on apixiban almost 2 years now. I had crippling migraines, crazy INRs and cannot self test because of LA. Triple positive and high titres, Sjögrens, Hashimoto’s etc.

Apixiban is great for me. It is dosed twice a day. Do not confuse apixiban with rivarxiban. They are not equally safe for us clotters. My migraines are 90% relieved on apixiban, a miracle. I’m so thankful for my specialist and this drug. I know it is not good for everyone, but what is? I got my life back with apixiban.