Introduction and question on Rivaroxaban

[IndyH]

Hi guys,

I am new to this forum, with this being my first post. Following a P.E in Jan, I have been diagnosed with Hughes Syndrome (two positive lupus anticoagulant blood tests). I did 7 months on Warfarin and have just been switched to Rivaroxaban yesterday.

Has anyone got any experience of Rivaroxaban for APS?

Indy

[Manofmendip]

Hi Indy and welcome.

Where are you from?

Dave

[IndyH in reply to Manofmendip]

Hi Dave,

I am from the UK, I live in London.

Indy

[Manofmendip in reply to IndyH]

Thanks Indy

Who is managing your APS?

Dave

[IndyH in reply to Manofmendip]

I only received my diagnosis formally yesterday through the NHS - an anti coagulation clinic at Newhman Uni Hopsital. I used to live in East London at the time of my clot and my nearest A&E hospital happened to be this one. They have discharged me from the haemo clinic at this stage after figuring out the reason for the clot and put me on rivaroxaban.

Privately, i am seeing Dr Hannah Cohen @ UCL, who also suspected the same diagnosis. I am waiting for my follow up consultation with her the moment - she repeated a thrombophilia screen. Can i ask why you inquiring?

Also, do you have tips for managing this condition going forwards with the NHS?

Indy

[Manofmendip]

Hi Indy

We always ask people to say where they are from, as then others near them can chat.

I was diagnosed on the NHS in 2002, saw Prof Hughes, privately, several times, now under NHS care again in Bath, at the Royal National Hospital for Rheumatic Diseases.

There is a list of local APS specialists on hughes-syndrome.org

Keep in touch.

Best wishes and regards.

Dave

[IndyH in reply to Manofmendip]

Thanks very much. Its good to see Dr Cohen is on this list! Take care

[Manofmendip in reply to IndyH]

And you

[rach1081985]

i have taken it 4 over a year now.......I was on warfarin previous for 5 yrs................. I have had a p/e twice, major dvt n clots on liver spleen and gut....feel fre message 2 message me 4 more info

[IndyH in reply to rach1081985]

Cheers i have dropped you a message.

[Barna2013]

Hi

I have been on rivaroxaban for about six weeks and I think my INR has been much more stable (all over the place with Warfarin). I am concerned as it's not as easy to reverse - in the case of an accident or injury - and I do wear an ID wrist band when travelling. I don't think there's been any side effects (although I did start Plaquenil at roughly the same time and I think there are some side effects for that). Hopefully it will keep your INR stable and you'll feel better as a result. It doesn't get rid of all the symptoms from flares, but day to day it does seem better.

[IndyH in reply to Barna2013]

Hi Barna2013. Thanks very much for your comment. It was my understanding that Rivaroxaban does not impact your INR but works in a different way. I am glad to see that you are doing well on it.

[tim47 in reply to Barna2013]

Really surprised that you were started on Plaquenil at the same time. My consultants who have made multiple changes to meds always get me to do one at a time, for a month, so as to be better able to identify what may be responsible for any side effects.

[chrissybell]

I've been on similar to Rivaroxaban for over a year (Dabigatran) Just diagnosed with Hughes a few weeks ago and local hospital want me back on warfarin. I wasn't very stable on warfarin, which is why I was swapped to Dabigatran in the first place, so will ask If I can change to Rivaroxaban - no it doesn't control inr - and yes biggest problem is the lack of reversibility - if you have an accident (whereas with warfarin they just dose you with Vit K) you could just bleed out - need to get to A & E quickly and need to have medical id on you (just in case) - my inr is 1.1 on Daqbigatran so they would never guess if they had to operate!). Am seeing specialist in 2 weeks - my GP said he'd go along with whatever I wanted and specialist suggested (Which I hope will just be a swap from dabigatran (unlicensed) to Rivaroxaban. Will update after 21st Aug. Good luck - I prefer the NOAC's (new oral anti-coags) - as there's not much testing!

[IndyH in reply to chrissybell]

Good luck and let me know. My nhs consultant did not want me to go on dabigatran at all but was happy to recommend rivaroxaban even in light of my aps result.

[chrissybell]

Thanks IndyH - will cross fingers! x Chris

[Barna2013]

There's another alternative which does not have the bleeding risk - my Consultant told me - administered by injection but apparently it's very expensive and it was unlikely my GP practice (or most others in my area) would want to fund. Not sure if it's heparin or something similar. Ideally I and others would have this but in practice GP wouldn't agree because of the cost (although in my case it's partly their fault things have gone so far without treatment as they insisted on the migraine/stress diagnosis - ho hum)

[IndyH in reply to Barna2013]

I think it will be interesting to see the outcome of the RAPS trial looking at the novel agents. Could your consultant be referring to clexane?