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Rivaroxaban and Ulcerative collitis

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Posted 6/11/2015 3:54 PM (GMT 0)
Hi,

I have had UC for 2.5 years and took budenoside and azathriopine on and off.

I was diagnosed with portal vein thrombisis recently and i have a blood clot which was seen on the CT scan.

does anyone know why we get blood clots?

I live in the UK and the haematologist gave me Rivaroxaban which I have only just started.

it is a new anti-coagulant drug in the UK and I am a bit worried about the lack of antidote if I will bleed internally in the future ( hopefully it will not come to that but heamorrhage is a risk wiht blood thinner drugs).

is anyone using that drug?

do we know what causes PVT for UC sufferers?

Thank you

Marie 

Posted 6/12/2015 12:58 AM (GMT 0)
Sorry Marie I cant help with your question, maybe someone else knows...
Posted 6/12/2015 7:14 AM (GMT 0)
Yes I was on this drug. Had a major bleed (unknown to me) and ended up being rushed in for blood transfusions. When first prescribed they emphasised it was irreversible ... But that as it only takes 24hrs to get out of your system, they just transfuse you until cleared. However when I had a major bleed the story changed ... And I was told that I had to come off it as if it happened again they could not guarantee keeping me alive and getting blood in fast enough. Quite a shocker.

The drug is great and far more favourable than warfarin or injectables (the latter I now do every day). However if your disease is not well controlled it's risky. With my disease now better controlled, I'm looking at moving back into it (albeit cautiously).

So it all depends on how well controlled your disease is. Keep an eye on your HB results with this drug!
Posted 6/12/2015 7:20 AM (GMT 0)
Forgot to add... I've asked too why exactly we are at increased risk but it seems unclear. I've had 2 DVTs in last 12 months and two instances of bilateral PEs. For me they've always come after a major flare (about 3/4 weeks after). So in my non medical brain I wonder if as the body bleeds with a flare it is working harder to try and stop it through clotting ... And kinda gets a bit too good at clotting.

I keep meaning to get tested for Hughes syndrome to see if that's something I've perhaps developed.
Posted 1/28/2016 11:18 PM (GMT 0)
Hi , recently came out of a flare about 5 weeks ago and felt so good! However about a week ago serious calf pain forced me to head to the Emergency service whom diagnosed me with a DVT! Was prescribed rivaroxaban twice daily (30mg in total).
Prior to diagnosis I had notice small amounts of blood in what was formed stool and so though an Infliximab infusion was due (every 6 weeks)
After starting rivaroxaban I have noticed heavier bleeding and diarrhea , and am unsure whether it is the rivaroxaban causing this or that I am flaring up with my UC . I am thinking rivaroxaban as I have no other symptoms associated with a flare (loss of appetite , cramps). I had an infliximab infusion yesterday and hoped that would stop things but to no avail(now I'm thinking that Infliximab has lost responsiveness , but maybe it's due to the fact I'm on an anticoagulant???)
Where do I go from here? I know how vital the anticoagulant is to treat my DVT but this bleeding has to stop??
Posted 1/29/2016 2:26 AM (GMT 0)
Hi,
I'm on warfarin for anti phospholipid syndrome after suffering a life-threatening major cerebellar stroke. Have been on it for about two years and it's never caused a drama with my UC and I've not seemed to bleed any more regularly with it, although I do freak out when I see blood in the toilet. I initially tried to get them to prescribe me dabigatran as there's an isolated case report of a patient with severe steroid-resistant UC going into prolonged remission with it, but they wouldn't due to the lack of antidote. I found clexane to be the best, UC symptoms improved dramatically, and certainly there are a lot of reports in the literature of that happening, almost made up for the painful twice daily injections!
Posted 1/29/2016 3:52 PM (GMT 0)
In simplified terms, inflammation and hypercoagulation hang out together and feed off of each other. I found out 2 years ago that I have Factor V Leiden. I got a line clot after being discharged from the hospital and it happened again last year. I think the guidelines for screening are for patients 40s and younger who have a clot. Neither of mine were true DVTs so I was on lovenox while symptomatic. I did have a clot in my leg as a child after my shin was mistaken for a soccer ball.
Posted 1/29/2016 8:55 PM (GMT 0)
What meds are you taking for your UC? You said that you had taken "budenoside and azathriopine on and off". You should be on something continuously and azathioprine takes a while to start working. The last thing you need now is to start bleeding from your UC while you are on a blood thinning medication.
Posted 1/30/2016 4:01 PM (GMT 0)
Hi,
I am also from England and am currently flaring an awful amount of blood etc for the last 3 months. I have been on Rivaroxaban for about 3 years I have had dvt's x 2 and V Leiden as well.
I have monthly blood tests for blood counts and iron etc. Yes you bleed far more than you think is normal for UC, do not panic if the water stays pinky red in the pan in my opinion your ok. However if the water and your stools are red/black go t A&E immediately.
I know you feel concerned that's totally normal if in doubt go straight to A&E. Take no heed of any advice if your worried if you're bleeding too heavily call an ambulance better to be safe than sorry.
I apologise if this upsets anyone but the health system in the UK is free from point of entry so we do not have to try endless alternatives or wait to see a specialist the emergency system will fast track you to seeing a GI sooner than waiting for an appointment.
UC and Rivaroxaban are not bed fellows however for blood thinning they are far better than Warfarin which made my hair fall out, after all it's basically rat poison.
Posted 1/30/2016 5:00 PM (GMT 0)
I can't agree with Rivaroxaban and IBD sitting comfortably together. Subsequent to my posts above I was put back on it ... Only to then have another major bleed and need transfusions. Ironically this was when my disease had been better controlled.

Whilst UK docs said the first major bleed was down to poorly controlled disease (I had a major flare) they did no follow up investigation. Said I could go back on it ... Which I questioned ... But they said it's fine. Then wham ... Back in hospital again needing transfusions. Now I live in France and they did some investigation ... Finding that rivaroxaban actually over thinned my blood to a dangerously low level. It was simply an INR test (normal for warfarin patients but not rivaroxaban ones in my experience).

So from an initial position of thinking great drug - I'm now far more sceptical about its controllability, management (in the UK at least) and suitability (for IBD patients specifically). Just from personal experience ... And maybe I'm the exception ... But maybe not!
Posted 1/31/2016 3:11 PM (GMT 0)
As I explained in a previous post Rivaroxaban and UC are not great bed fellows , however having experienced several dvt's over the years thanks to V Leiden the balance must be met. You don't have an INR test like I did up to 3 times a week because warfarin was for me unstable. The balance is knowing your own body, maybe jumping for help a little prematurely sometimes when bowel bleeding becomes unacceptable. I know UC may not kill me but a clot would, and sometimes without warning. So I have learnt to have blood tests when flaring monthly, monitoring daily my blood pressure, when it dips low I seek immediate help. Knowing and taking care of ones body is your own responsibility. Yes, at times I worry but hey I could get knocked over by a bus tomorrow, at least my knickers would be clean! (English humor the Brits would get the last line lol)
Posted 7/12/2017 11:25 PM (GMT 0)
Was on rivaoxiban after my heart attack , everything was going fine well apart from my mental state was always thinking the worst , anxiety, abit depressed, nightmares , headaches, itching , rashes and other symptoms , but the worse was peeing blood and to be honest it wasn't pink it was just like red wine, that happened approx 20+ days I monitored it it was like beer colour in the morning, then as the day progressed it got darker and darker, obviously I was thinking organs damaged or cancer this went on for 10 days , horrendous, anyway I went gp after a cpl of days , did a sample, then had blood tests my arrhythmia nurse told me to stop taking rivaroxiban, and tell my gp to change it to edoxiban, a cpl of days later I finally was peeing clear👍🏻 Then believe it or not started peeing blood again after 20+ days so I stopped taking edoxiban as I had a consultation a few days later with my cardiologist he said he was going to stop them anyway I've been peeing clear ever since but tbh ever time I pee I hope it's clear or yellow and nothing else ,
Asprin
Clopidogrel
bisoporol
Atorvastatin
Ramipril
I will also add whilst on the rivaroxiban/ edoxiban I would wake up in the morning my gums had bled too due to aspirin clopidrol and edoxiban/ rivaroxiban now I seem to be well on the mend
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