Lupus Anticoagulant

[cacosta523]

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!

[Debbweb01]

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!

[cacosta523 in reply to Debbweb01]

South Carolina. I was diagnosed by a hematologist.

[Wittycjt]

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!

[cacosta523 in reply to Wittycjt]

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.

[MaryF Administrator in reply to cacosta523]

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

[cacosta523 in reply to 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?

[Lure2]

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

[Lure2]

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

[cacosta523]

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.

[GinaD]

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.)

[Wittycjt]

How are you doing now?

[cacosta523 in reply to Wittycjt]

I had an appointment with the neurologist and found out I have slight carpal tunnel in my left hand and slight arthritis in my neck. I'm doing much better!!!

[Lure2]

Hi again,

Did you read what i wrote about my Carpal-tunnel-syndrome that was gone when I was properly anticoagulated?

Also the Neurologists do not "get" what this illness is about - too thick blood - so I wonder if you have decided to see a Specialist of autoimmun illnesses. Arthritis is also an autoimmun illness if you really have that.

As APsnotFab says Eliquis is not the right drug for you. It is important for your health that you now get the right anticoagulation.

Kerstin in Stockholm

[cacosta523 in reply to Lure2]

I'm seeing my hematologist on August 4th so we can change medication. And no I don't have a specialist for autoimmune diseases.

[Wittycjt in reply to cacosta523]

I thought you had this appt already and I was asking because of what Kerstin had said, I agree with her, please be careful. If you develop any other symptoms get seen medically STAT. Wishing you the best. Cindy

[Lure2]

So you have got a Neurologist and an Hematologist and none of those Doctors have a Specialist-competence for autoimmun illnesses. Sorry about that. It is a neurological illness so most Specialists come from the Neurologists. But it is also a blood disorder so the Hematologists could often also know a lot.

We really have to have a person who can answer on our questions, give us the right treatment and of course also understand our problems and take the responsibility for our health and care.

It is a very tricky illness that can attack all of our organs and and make our Mitocondries (the energy-centrum in all our cells) loose their energy. The best key is anticoagulation for our thick and sticky blood. Good Luck!

Kerstin in Stockholm

[Lure2 in reply to Lure2]

Oh !!....... I wrote a "neurological illness" ..... I meant of course a "Rheumatolgical" illness even if we have a lot of neurological symptoms. Also I meant most Specialists come from the "Rheumatologists" .......not the Neurologists.

Sorry! Kerstin