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Puppy sleep  Cindy in nj wrote over 1 year ago

Looking to get off of warfarin and try a Nuevo -anticoagulant.... Information? Anyone?

Category: Blood Clots

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  APS Foundation of America  (website) - (3) - posted over 1 year ago

Also are you using a finger stick machine?

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Puppy sleep  Cindy in nj - (4) - posted over 1 year ago

I was told they are inaccurate for APS, is this not correct?

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  APS Foundation of America  (website) - (3) - posted over 1 year ago

Yes, they are inaccurate in APS patients. Citations: http://www.apsfa.org/fingerstick.htm

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Puppy sleep  Cindy in nj - (4) - posted over 1 year ago

What do "moderate" positive cardiolipns mean for someone diagnosed w/ APS?

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Wolf  Pavan - - posted over 1 year ago

Yes you're right Cindy. They can give inaccurate high INRs which could lead to dire consequences. It's better to go to the lab. I would continue to talk to the APS Foundation of America. They're experts on this matter.

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Puppy sleep  Cindy in nj - (4) - posted about 1 year ago

Do you know what brand of machine this/these were?

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  APS Foundation of America  (website) - (3) - posted over 1 year ago

We see many APS patients clotting on this drugs. We currently have about 20 clients participating (that we know of) in the class action suits for clotting on the drug. The class suit attorneys are taking them. There are no released studies of safety in APS patients. Our medical advisers are not recommending them at this time.

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Puppy sleep  Cindy in nj - (4) - posted over 1 year ago

Which drugs, all? This is vague? Thanks

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  APS Foundation of America  (website) - (3) - posted over 1 year ago

Xarelto and Pradaxa.

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Penguin family  amruske - (18) - posted over 1 year ago

What test is run to know if you have APS ? I just clotted on Xarelto this past week.

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Puppy sleep  Cindy in nj - (4) - posted about 1 year ago

How did you make out?

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Puppy sleep  Cindy in nj - (4) - posted over 1 year ago

How long were you on the Xeralto? They are doing a gov study on Xeralto for people w/APS now. It should be complete next Dec(2016)

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Puppy sleep  Cindy in nj - (4) - posted over 1 year ago

Igg, Igm, cardiolipins, and specifically for "antiphospholipids". There might be others but
I can't recall, sorry😞. I wouldn't wait on calling your Dr ASAP regarding this. Check out my history. I didn't know I had this until I had stroke. Let us know how you make out. I "assume" your warfarin is working, when you call about the other tests, ask him/her, again call ASAP so they can care for you correctly. Too much or to little Coumadin/warfarin can possibly harm you or worse... Don't wait. I hope the best for you🤓

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Puppy sleep  Cindy in nj - (4) - posted over 1 year ago

Thank you, anything on the horizon for APS patients on warfarin? Anything being studied?

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  APS Foundation of America  (website) - (3) - posted over 1 year ago

Nope, not really. It is antibody control that is what they are looking at for us.

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Puppy sleep  Cindy in nj - (4) - posted about 1 year ago

Hmmm I question that? I had a child 30 yrs ago accompanied by a TIA ( mini stroke) and no problem for 27 yrs, after no meds, no life adjustments at all then WHAM: headache, followed by a massive stroke, and diagnosed with APS

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Puppy sleep  Cindy in nj - (4) - posted over 1 year ago

Where can I view this or any info that is being looked at? Thanks😊

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  APS Foundation of America  (website) - (3) - posted over 1 year ago

Clinicaltrials.gov

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  Blood Clot Recovery Network  (website) - (6) - posted over 1 year ago

Hi! I have APS and take warfarin. I am not sure what Nuevo is. My concern would be making sure it is approved or studied in APS patients, due to the constant need for monitoring because of the nature of the disease. Many new medications are not yet approved for broader uses. Are you able to follow-up with a specialist?

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Puppy sleep  Cindy in nj - (4) - posted over 1 year ago

The new anti thrombotics coming out now eg: Xaralto, Eliquis, etc

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Wolf  Pavan - - posted over 1 year ago

Hey Cindy could you tell us about your history with Warfarin, your INRs, how long you've been on it and any clots you've had? We'll be better able to help you with that :)

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Puppy sleep  Cindy in nj - (4) - posted over 1 year ago

Jan of this year had a stroke, at that time I was diagnosed with APS, had heart surgery to remove a "vegetation" growth (done at Mt Sinai in NY) they dischgd me without any anti coagulants, the following morning I had another stroke effecting my left side: paralysis and unable to walk. I am 53 years old. After much rehab and hard workI am ambulating again. I have been taking coumadin (warfarin) since Feb. the doctors are trying to keep my INRs between 2 and 3. I take 12.5 mg of coumadin alternating with 10 mg depending on my INRs that I have done two to three times/week. Thank you for any assistance. Keeping ahead of the vitamin K has been difficult, I have lost 20 pounds. Any studies advocating meds that do not have to be concerned about Vit K that have been successful is what I am looking for. Thanks...all

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Wolf  Pavan - - posted over 1 year ago

Cindy, I am so sorry about what you went through! I wish they would've given you heparin right away and bridged you onto warfarin.

There's something called the low dose vitamin k technique. It can help you regulate your INRs without having to worry too much about vitamin k :). You can read all about it here. We spent months writing this to make it perfect: http://inrtracker.com/articles/diet/coumadin-diet

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Puppy sleep  Cindy in nj - (4) - posted about 1 year ago

One suggestion or comment. Can the referral websites be made into blue colored areas where you can just tap on them to get to the websites depicted in the statement? This would be so much more user friendly for me (sorry I'm being selfish) but I think others would appreciate this also. Maybe a link for a description on how to do this for those contributing a response😃 Thank you

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Puppy sleep  Cindy in nj - (4) - posted over 1 year ago

I'm on it , going to look at it now Thanks😀

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