Lupus Anticoagulant

Hi! I was diagnosed with LA just recently. I am on Eliquis twice a day. There have been no problems with the medication and I am grateful for that. Unfortunately, my insurance will not cover it. I got a trial card at the hospital. What other medications are as easy as Eliquis? And will I have to be on blood thinners the rest of my life? I did have some PE's in the lungs before finding out about LA months later. Thanks!

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  • Where are u located! You must be properly anticoagulated! Most are on Warfarin! Do u have an APS specialist! Most r either Hemotologist or Rheumatologists! Neurologists too, but they don't understand our disease!

  • South Carolina. I was diagnosed by a hematologist.

  • Welcome. You said you were diagnosed recently, when and by whom? Did you have the blood tests repeated 12 weeks apart?

    Only a few people on here use Eliquis as it has not been"approved" for our disease. So it is prescribed off- label by their physician(s).

    Some do use xeralto but it also has use "limitations". My understanding with xeralto is you must take it at the same time every day and you must take it with food. This may be as easy but check that it is right for you. Also, check your insurance will cover it.

    I am taking lovenox injections 1mg/kg body weight every twelve hours, it was prescribed by my hematologist. I don't like the injections but love the fact I can eat what I want without having to be concerned about my INR.

    I'm sure others will be entering the post soon. Good luck!

  • I was diagnosed by a hematologist. And before I could do the 12 weeks apart I ended back in the hospital. They thought I had a stroke. Been to the neurologist and luckily was carpal tunnel and arthritis that caused tingling in my left arm and hand. The hematologist recommended I see the neurologist.

  • It is important that you, with the help of others on here, find a Hughes Syndrome/APS Specialist. Also that your B12, D, Iron and Thyroid are checked in addition to your other tests. Carpel tunnel is prevalent with Thyroid issues, and Thyroid in general common with Hughes Syndrome/APS. Sorry for short reply, keyboard playing up. MaryF

  • I was diagnosed 2 years ago with Hashimotos disease. My vit. D and B12 are fine now as well as my iron. I receive B12 shot on a weekly basis. And is my hematologist not good enough?

  • Hi and welcome to our friendly site!

    I see you have just jouned our Forum and I wonder who gave you your diagnose of Hughes Syndrome/APS/Sticky Blood?

    Best wishes from Kerstin in Stockholm

  • Hi,

    I am quite sure you should look eagerly for a Specialist of HS/APS and now you have two good answers from member-friends in the US.

    Probably it was a stroke or a TIA you had.

    I also was told I had Carpal-tunnel syndrome and they wanted to operate. When I later on did not have a Neurologist (they do usually not "get" what HS/APS is - too thick blood that has to be thinned) and had a Rheumatologist and Hematologist and was put on Warfarin, the symptoms of the Carpal-tunnel and the tingling disappeared.

    Prof Hughes has written about this in one of his books that anticoagulation can take away things like a carpaltunnel-syndrom when our blood is thinned enough!

    If suggesst you read "Sticky Blood Explained" by Kay Thackray. She has got this illness and writes about a lot of different symptoms. Many members here like the book and it is also good for relatives to understand this illness. it is not quite new with the latest drugs like "Eliquis" (wrong spelling perhaps).

    By the way I do not think that drug is ok for you with your suspected TIA or stroke. That the Specialist can tell you about!

    I have Lupus Anticoagulant positive like you.

    Good Luck!

    Kerstin in Stockholm

  • As has been said Eliquis is not yet approved for our condition. Why were you not put on warfarin? That is normally the drug of choice and even if you don't have it after being tested again it is normal to give it to people for 3-6 months after a DVT or PE.

    Did they test you for the other antibodies!? BTW it's not called Lupus Anticoagulant as the name of the condition, that's the name of the antibody you have tested positive to for the disease which is Antiphospholipid Syndrome/Hughes Syndrome.

  • I was initially put in the hospital in November last year because I thought I was having a heart attack. That's when they found the blood clots in my lungs and put me on Eliquis. I went to the hematologist a week later for more blood work, that's when they discovered the Hughes Syndrome. He was fine with me being on Eliquis. I wasn't aware it wasn't approved for my condition. I have an appointment with him in the next few weeks, I'll discuss it with him! I've also had MRI and CAT scans for all this, as well as my carotid artery ultrasound. Nothing has shown up that I have blockages.

  • A lot of doctors remain highly suspicious of warfarin calling it "killer Coumadin." But for most of us, it's the perfect drug

    I've been on warfarin for 17 years now. It's cheap, and it works. You do have to get the hang of the dietary issues. when I first started on warfarin, I took my diagnosing hematologist's suggestion and kept a notebook in which I wrote down everything I was eating and doing. I printed off a sheet from the Internet about dietary interactions with warfarin. And every week I sat down with my notebook and compared the stability of my INR with that week's food and activity levels. In a few months I had sorted out what works for me.

    Within those 16 years I have been Below range 3 times, and above range only once ( that was when I was prescribed an antifungal drug which, as it turns out, does affect INR if you take the antifungal for more than a few days. That prescribing doctor told me there would be no interactions with warfarin. After I ended up with a bloody nose in the middle of a meeting, that doctor did apologize. Yeah -- like an apology makes everything fine. I kind of wish my insurance company would bill her office for my ER trip that day.)

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