Rivaroxaban

[lucybelle]

Hi all, have discoid lupus on Rivaroxaban due to blood clots, was on warfarin but INR very unstable, since changing now take omeprazole due to chronic indigestion, and. Now also have high potassium and racing heart but docs won't change me back to warfarin which I had no side effects. Any ideas as what I can do as I need my anti coagulant?..

[daisyd]

Hi, who do you see regarding your Lupus and who decided about your Warfarin, were you tested for Hughes syndrome (antiphospholipid syndrome) a lot of questions sorry but sounds like you need to be reviewed again

[lucybelle in reply to daisyd]

Tested for Hughes border line consultant heamotologist took me off warfarin

[diane1428]

Hi Lucybelle,

It was interesting to read you are now on rivaroxaban as a friend of mine was put on this and said it was the best thing they could have given him.

How long have you been on it?? ill ask him how long it took for him to settle down on it.

Having problems with INR myself I can sympathise as it makes you feel awful.

Your first reply might be right regarding Hughes syndrome. I have this myself with lupus and cannot do with out anticoagulant. Make sure this is the diagnosis before going further. It really is necessary.

[lucybelle in reply to diane1428]

Hi been on it since October 2014. Hughes syndrome border line.

[tennissenior]

I looked up Rivaroxaban and it's a blood thinner like what I take -- Warfarin (Coumadin). In the US it's called Xarelto. My doctor will not allow me to take it because I've had blood clots twice. Coumadin is a nightmare because I had to cut out all the veggies and other foods I love. Every once in a while my INR goes ballistic and my doc starts changing my dosages and I get jabbed every week. I thought with your med you don't check INR??? I also have ITP - very abnormal platelet count, so when I get cut, I can't clot. My hematologist said there is no "antidote" for Xarelto and he won't take me off the Coumadin. With Coumadin, worst case scenario I can get a shot of Vitamin K and it will stop bleeding. All of the blood thinners make your heart race and skip. I also have more hair in my hair brush and on the white tile on my floor than on my head. Between the Coumadin and Synthroid, I keep losing hair. All of this is very depressing..but we can't change us. Discoid Lupus is not the serious kind. You can even go into remission. Ihave SLE and I am too old for remission. So this is my life and I just hang in there! I have a lot to deal with as well. I can't enjoy dining out or cruises because of the Raynaud's. I am happy at home where I can control everything - but I can't live in a bubble. I have a husband, and I would have to - and it's not fair to him. Hang in there!!!

[diane1428 in reply to tennissenior]

Bless your heart, ive the same as you and yes my hair does come out quite a lot at times. Its interesting though that you do bleed. I get very excited if I do bleed but most of the time it just bubbles and I don't bleed at all. I suppose im lucky?? though I do still have to worry about blood clots even though im on 7mg of warfarin at the moment.

[Natura]

Tell your doctors to look at Enzymedica in Florence, Fl. The top dog in enzyme production. I can take up to 6 tablets daily of Natto K. An enzyme invented by a Japanese scientist to prevent sticky blood. I take 4 a day for the past 10 months. No side effects. Can't. Be sure it's working, other than I have not had a stroke or heart attack. May or may not work. Can talk with someone online thru chat room. They can send you information sheet on product. Good luck! Sorry for your troubles....

[daisyd]

Morning brain not working very well this am so please excuse me if this doesn't make sence

I know I talk/ write about it a lot Hughes syndrome can sometimes not be shown up in blood tests please check the site where it gives information on who are the best Haematologist in your area, as tenissenior has said there is no antidote eg Vit K it's a very new drug.

Being on Warfarin with my INR in the range of around 3.5, I eat all vegetables as long as you eat the same amount regulary INR should stay around the same, there are some really good lists of foods that contain vit k which makes it easier

Luckily I managed to buy my own coagucheck machine so I can test my own INR, you will also see about this on their site

Stress and along with several other things can mess with the INR sometimes there doesn't seem to be any cause

Good luck hope you soon feel better

[diane1428]

Unfortunately it is down to the docs. It seems a little early to say Warfarin wasn't working as ive been on it 11 months now and my INR is all over the place. The thing is if my INR is low I just up the warfarin you cant do that with Rivaroxaban. All you can do is get a second opinion - difficult in itself as so few doctors know what they are doing with aps and lupus. Just plug away and try not to get too down its wrotten I know. Best wishes Diane