Has anyone been prescribed Rivaroxaban.

[BrownChocolate]

I have been taken off fondaparinux as it is on the red list of medicines and have been given Rivaroxaban.

has anyone been given this med and how have you reacted to it.

Thanks

[daisyd]

I was on fondaparinux it didn't suit me I am now back on Warfarin what is the red list

[T_wellbeing]

CIAO all

I don't have Hughes syndrome so not sure how relevant this will be but I am on rivaroxaban so I hope it will help anyhow! I have been on rivaroxaban (Xarelto), for a year, because I have a chronic DVT in my femoral vein (abdomen). To cut a very long story short I AM VERY GRATEFUL & LUCKY TO STILL BE ALIVE ;0))))))

after having a 60 (yes SIXTY) cm DVT last year June 13 2013 extending from my left knee, up the inner thigh, groin and into the belly button. After having clexane injections initially in hospital I was soon put onto xarelto -15mg twice a day for the first month &since then 20mg once daily (& I wear a compression stocking full-time except when I sleep). My DVT is now 20cm extending from the groin to the belly button but I have full to partial flow in the rest of the vein where the 40cm blockage was!

I know people who have been on warfarin long-term (& there are many on this blog it seems!) and am very glad that there was an alternative for me. Xarelto only went onto the PBS (subsidised) in Australia 3 months before I needed it(thanks goodness because it is NOT cheap!). Not everyone can tolerate xarelto -common adverse affects are (from Wikipedia)" In 1 to 10% of patients: anaemia, wound secretion, pruritus, extremity pain, dizziness, headache, syncope, gastrointestinal pains, peripheral oedema, decreased general strength and energy" but I am one of the lucky ones who can -although I have experienced severe anaemia, wound secretion, gastrointestinal pains & haemarrhoid bleeding and decreased general strength & energy -I'm permanently on high strength iron, vitamins galore especially immunity boosters and more than enough SLEEP is essential! Life is not perfect but it is good! I try to live with an ATTITUDE OF GRATITUDE -especially for more time to be alive with my hubby & 7yo daughter

Also from Wikipedia -& you can get this info from your pharmacist too -"It is an orally active direct factor Xa inhibitor. Rivaroxaban is well absorbed from the gut and maximum inhibition of factor Xa occurs four hours after a dose. The effects lasts 8 to 12 hours, but factor Xa activity does not return to normal within 24 hours so once-daily dosing is possible. The main issue with it is that there is currently no specific way to reverse the anticoagulant effect of rivaroxaban in the event of a major bleeding event, unlike warfarin." So be SUPER careful not to cut yourself deeply & my advice (if you don't already have one for other medical reasons) -is get a medic alert bracelet stating you are on xarelto

Daily mind-body healing meditation also essential for me ;0)

Best of luck!

hope this helps you

Cheers to holistic WELLBEING!

T

[Tbunny1]

I have SLE and APS, have been on fondaparinux injections for five years. I recently tried to switch to Xarelto (rivaroxaban). Within 48 hours my kidneys began hemorrhaging and my urine turned the color of cola. My hematologist advised me that it requires perfect renal function to clear Xarelto, something us "Lupies" often struggle with. Am back on the fondaparinux for now.

[rach1081985]

hi i take it have been on it for over a year now and its so much better than warfrin... feel free 2 message me if need more info x

[Lure2]

Hi, I can only repeat what KateH wrote 2 months ago on this site that Rivaroxaban is NOT APPROVED for APS!

As I am not medical trained and also from another country I do not know what has happened the last two months but I guess Rivaroxaban is not approved for APS.

Best wishes from Kerstin in Stockholm

[Rob79]

Hi, I am taking Rivaroxaban and have been now for around 9 months, Im 34 and got a DVT about 18 months ago I was then diagnosed with aps and lupus and put on warfarin, I have since taken part in a drug study for rivaroxaban run by st thomas hospital in london and since the trail ended I requested to stay on it. For me it's a more convenient drug and I feel better on it than I did with warfarin and have had no side effects but everyone is different and you have to do what feels best for you, they only recommend it for patients with a INR range of 2-3. I have added a you tube link to the HSF Aps patients day in London where Dr. Beverley Hunt talks about Rivoraxban I hope it helps. youtube.com/watch?v=QHON1Xa...(Not working as expected?)

[Lure2 in reply to Rob79]

Hi, I have listened to your link. Thank you.

She says there just as you write that it is for people with an INR betwen 2.0 - 3.0. May i ask what your therapeutic range is?

Most of us with APS need an INR of 3.5 to feel free form symptoms, Perhaps therefor it is not approved for APS yet. We have so very thick blood. It is now after I have started to selftest that I have noticed that I am not bleeding at all when I am on 3.5!

So I guess we do not know how thick our blood actually is. Doctors are very afraid to let us up.

Thank you for sharing with us.

Best wishes from Kerstin in Stockholm