DOAC anticoagulants: Are any of you on... - Hughes Syndrome A...

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DOAC anticoagulants

nmousdic profile image
17 Replies

Are any of you on DOAC instead of Warfarin and if so ho well have you done

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nmousdic
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17 Replies
rach1081985 profile image
rach1081985

Yes I'm on rivaroxaban as warfrin didn't work for me or fragmin and aspirin..had health issues but no clots .. been on since 2013 diagnosis in 2008

nmousdic profile image
nmousdic in reply to rach1081985

May I ask what dose you are on and are you triple positive or with a history of arterial or venous thrombosis.

Appreciate your response

rach1081985 profile image
rach1081985 in reply to nmousdic

20mg once a day venous thrombosis..lots of clots and PES twice on both lungs...ivc filter in and vein damag both legs

KellyInTexas profile image
KellyInTexasAdministrator

I was on apixaban- high dose plus clopidogrel And pravastatin and I clotted within one week.

MaryF profile image
MaryFAdministrator

I am not on them, but a fair few on here are, with mixed results. MaryF

Ozchick profile image
Ozchick

I was on Rivaroxaban for a couple of years and despite being compliant taking them start to get odd symptoms. This was just before Bayer said they were not advised for APS. So last 18 months back on LMWH twice daily + Aspirin. No probs since starting.

Louloubug profile image
Louloubug in reply to Ozchick

Hello, I was on this med, for a VERY short time. I almost bled to death, I went to the hospital, and a Nurse Practioner wanted to put me on dialysis.

I thought she was mad, so I suggested to receive fresh frozen plasma along with IVIG.

KellyInTexas profile image
KellyInTexasAdministrator

I was on high intensity apixaban ( twice daily plus clopidogrel and statin) and clotted in a weeks time.

I did post this answer to you yesterday- not sure where it went, so I’ve just written this response again.

nmousdic profile image
nmousdic in reply to KellyInTexas

Thank you. Have you thought in going onto a ketogenic diet

sheshells profile image
sheshells in reply to nmousdic

Hi, I'm still doing the Carnivore-ish diet. Are you and your wife still on it?

KellyInTexas profile image
KellyInTexasAdministrator

I have though about it. What do you know if it?

Stereolover profile image
Stereolover

I’m on 75mg of Clopidogrel daily.

mariamoo1 profile image
mariamoo1

Been in apixaban for over two years now, fantastic. Got worried as blood clots appearing under skin. But Dr assured me it was because the drug is going it’s job.

Lure2 profile image
Lure2

I hope your wife has got a Specialist of autoimmun illnesses today. That is so very important.

A diet can not replace anticoagulation. We have too thick blood!

Is she also triplepositive to APS she should probably be better on Warfarin. Warfarin is said to be the best alternative for us with APS.

sheshells profile image
sheshells

I took Xarelto a year ago when my PEs were found on a CT scan -- did the Xarelto "Starter Pack" protocol (which is 15mg twice daily for 3 weeks, then 20mg for however long the doctor recommends). I took it for 6 months. Then had a repeat CT scan of my lungs and the PEs had disappeared. Also had ultrasounds of both legs and arms looking for any additional clots, but none were found. Several months later my APS diagnosis was made (Aug 2020).

My current hematologist was comfortable putting me back on Xarelto since I had good results before. My only complaints are chronic constipation and headaches. I had those side effects on Xarelto the first time too, but the headaches finally resolved after my body adjusted, I guess. I've always had a problem with MANY drugs causing me constipation, and when I was on Xarelto the first time, it took a while to get that side effect addressed. I'm still working on it this go around.

P.S. I'm going to start a new post asking folks to report what side effects, if any, they experience on Coumadin (warfarin). As well as asking if anyone had success with resolving memory issues, tinnitis, or halting the progression of mitral valve disease.

nmousdic profile image
nmousdic in reply to sheshells

Are you still on Xeralto or are you now on Wafarin.

Health wise you have to go on a low carb diet don’t eat any processed foods no seed oils

Go to dietdoctor.Com for suggestions.

sheshells profile image
sheshells in reply to nmousdic

I'm still doing Carnivore, with a little full-fat dairy, 1-2 eggs daily, and occasional seasonal berries. I gave up sugar and refined vegetable and seed oils almost 3 years ago. Have also been gluten-free for nearly 2 months. I mostly don't eat seeds or nuts at all anymore either.

Just started the Xarelto 3 weeks ago. Considering Coumadin if, in addition to clot prevention, it would help relieve tinnitis, mild memory issues, and provably help prevent the progression of mitral valve prolapse.

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