Sticky Blood-Hughes Syndrome Support
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More Blood Work

So I received more if my blood work and instead of having one positive antibody I have 3 out of 6 on the panel that was done. Still no sign of lupus, my specialist just said that this is overwhelming proof of my APS. Also my vitamin D came back at 10 so I've been ordered to take 7500 units per day, which they only sell in 1000 so I have to take 7 pills daily. The most frustrating is my meds, my GP finally prescribed them in the 12th(I was diagnosed by specialist September 22nd) Now Medicaid is holding me up by requiring pre authorization. I live in Colorado USA and wonder if anyone else has issue getting Apaxiban also known as Eliquis? This is very frustrating because the longer I'm without the more chance there is a clot forming in anartery. With my history it's almost guaranteed.

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Hi, 7 tablets of D-vit each day ....?! I live in Sweden and I take "Kalcipos - D forte 500 mg/ 800 IE" each day. I am not Medical trained so i do not know what you mean with "units".

I do not know if he has made a wrong prescription but I know it is not good to take too much of D-vitamin and my Rheumatologist has prescribed it together with Calcium.

Hope someone else here can correct me if I am quite wrong about your 7 tablets.

Best wishes to you and your mother from Kerstin in Stockholm


HI, it does sound as if things are shifting, and good they are also treating your vitamin D, I hope whoever has to sign the authorization gets a move on, is there anybody you can phone, (in particular the doctor who prescribed this), or perhaps writing an email to them, to explain the likelihood of an event. Best of luck. MaryF


I have been calling everyday trying to get this pushed as fast as possible. Medicaid is the insurance and out of pocket it's way beyond my means. I have even told them that now that it's been a month I would have grounds for a lawsuit in the event so do get a clot because I have been denied my medication that is needed so hopefully Monday something good will come of this.


Move on to putting it in writing next, in an email, that way they can't ignore you. Best of luck, here comes the new week! MaryF


Can you take warfarin? It is cheaper, so maybe easier to get approved in CO. In New York I take 50,000 of vitamin D2 once a week, because it is prescription and paid for by Medicaid.

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By the way, I don't think you can sue Medicaid or any doctor who is taking Medicaid, so that may not work--threatening to sue.


Hi there,

I am on apixiban (Eliquis) and the hospital pharmacy had to fight with my insurance company to get it approved but it only took a few days. Also the drug manufacturer offers a copay card that got the cost down to $10 for my months supply, something to look into. Best of luck!

-Megan from Indiana


I do take warfarin, the old fashioned, you-have-to-get-blood-tests-and-modify-diet pill. But, with no disrespect to Arnold Palmer and his crew on those TV commercials, but, as one doctor pointed out to me years ago, "We have been prescribing warfarin for half a century, and before that, the Amazonian Indians used it for hundreds or thousands of years. We know everything it does. It is the rare drug in that it does what we ask it to do and ONLY what we ask it to do. It inhibits the uptake of Vitamin K. And that's it! And though this is also associated with a greater chance of loss of bone density, this is an expected result of Vitamin K inhibition. Warfarin brings no extra risk of cancer, no bizarre system failures. It inhibits the uptake of Vitamin K and that is ALL that it does. Period."

Another plus to warfarin: if your blood does get too thin, you can receive a shot of Vitamin K which will help thicken your blood -- not immediately, but -- we're all different-- within a few hours or days. The newer decoagulants can not be reversed as easily or as quickly.

I don't mind the blood tests, and the dietary trick is to check out the K levels in various vegetables and then try to eat the same amount every day. Also, since warfarin has been around for so long, the generic warfarin is pretty cheap.

But I'm no doctor. If you doctor suggests Eliquis, then go with Eliquis. Unless Medicaid is too resistant; then you might suggest to your doctor to put you on warfarin -- at least until you can maneuver the Medicaid people into your Eliquis corner.

Or -- check with your doc about taking a baby aspirin a day for the time being until you get this insurance debacle resolved.

Good luck!

Oh! One other thought: They have earned a well- deserved bad reputation, but tanning booths can be a good source of Vitamin D. (And do note: oral Vitamin D will also thin your blood.) The trick is to stay in them for only 8 - 12 minutes at a time. I cover up my face and my hands and feet (which have been sun burned often before) and when I first started going I explained to the owner that I was after Vitamin D -- not a tan. I started out at only 5 minutes, then increased by 1 minute every week for my twice a week sessions. I have not been lately, as we have had plenty of sunshine here in WV, but I may start back later in the winter. I do have a hard time with the owner as she endlessly urges me to stay in for longer times ("You've already paid for half an hour! Why do you always leave early?") because she thinks I should get that deeply bronzed look. I reply "I'm after the Vitamin D. Only. Not the tan and the attendant increased risk of melanoma." (She doesn't like my replies.)

There is a web site run by the Norwegian government which you might google -- it gives the estimated time you need to be in the sun dependent on your latitude and time of year.


Call the makers and they will offer you the $10 co-pay card most likely...My MD gave me a card, but the card says on it, call if you lose this and we'll get you another it is $10 per month for a Colorado as are you.


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