Query re Rivaroxiban

[marion4711]

Hi I’m Marion. Been on here since June but only posted once or twice in reply to others. A couple of months ago I changed from warfarin to Rivaroxiban and I feel very well on it. For the first time since I can remember, I feel properly warm. However, the strange thing is that I’m bruising less than before I was on any medication. I had a bad fall yesterday after tripping over a paving stone and expected to develop a large bruise on my knee and hip. I only have a very small bruise on my knee and none at all on my hip. This makes me wonder if the Rivaroxiban is working but it must be doing something as I no longer have icy cold hands and feet.

[HollyHeski Administrator]

Hi, I have been on rivaroxaban now for 18 months, switched from clexane, I have had strokes so its really not approved for arterial clots yet - I also take clopidigrel and aspirin daily.

Ive not noticed any change in my health, was pretty stable on clexane. Funny thing is I bruise more!!

As long as you are under an APS specialist and you inform them of this change in bruising, - and more importantly your symptom free/better then I wouldnt worry.

[MaryF Administrator]

It will be interesting to see all the replies. I know Clopidogrel is known to be pretty 'bruisy' MaryF

[HollyHeski Administrator in reply to MaryF]

Not seen any difference on clopidogrel - been on it for over 10 years - probably my low ferritin causing it?

[lupus-support1 Administrator]

Hi Marion,

If you have any concerns, please make an appointment with your doctor.

With good wishes,

Ros

[Ozchick]

I've been on Rivaroxaban for a few years now. I do bruise less except for one time I missed the edge of a chair to steady myself and crashed down on the dog's bed and had quite a whopper! That one took a bit of time to resolve. I find the odd small bruise now and then but I also don't bleed as freely as I did on Warfarin or Clexane. It more or less just seeps on minor cuts. I also take a daily 100mg Aspirin. I feel great on this combo.

I do get 6 monthly checks with Haem for kidney and liver function as Rivaroxaban can have an effect on these organs but so far all have been within normal limits

[Wittycjt in reply to Ozchick]

Ozchick,

Apologies, I can’t remember and didn’t see anything in your bio, do you have a stroke history? If so how did you get on Rivo?

[Ozchick in reply to Wittycjt]

Had PE's in 2011 and subsequently diagnosed with APS. On Warfarin first-very unstable INR's, then Clexane and got a 15cm DVT after about a year then changed to Rivaroxaban. I had TIA's on Clexane and also vision disturbances and Haematologist changed me to Riv. Not long after starting it there *may* have been a small clot (not confirmed by scan) and added aspirin 100mg to the mix. Since then I've been fairly trouble free.

[Wittycjt]

I see, thanks for the reply🧐

[suntap]

Hi.

I was put on Riv. after my P.E's in early 2015. I never felt any relief of my APS symptoms (am seronegative) yet collected many more diagnoses along the way. In 3 years on Riv. I never once got a bruise or bled, so much so they had trouble taking blood for testing! I cut my finger one day whilst slicing tomatoes, it stung and I rushed to hold it under some running water, only to find out not ONE drop of blood came out of the rather decent sized cut. Whilst on Riv. I also suffered about 10 T.I.A's and migraine 3-5 times per week, every week.

My doc finally changed me to Camoudin about 2 months ago and am feeling so much better and have only had ONE migraine in all that time. Miracle! I have had frequent and debilitating migraine since I was 18. If only I knew then the effect of warfarin, it could have saved me from so many drugs and chemicals ingested in over 35 years; it can't have been any good for my system.

I honestly and truly believe that Riv. had absolutely no effect on me whatsoever.

[CormorantWatcher]

My understanding was Rivaroxaban worked in a different way to Warfarin, affecting a different pathway. No idea if this is the case, or if I just misinterpreted the explanation when it was suggested instead of warfarin (as being easier to manage long term).

Personally, I did notice bleeding events on warfarin - the odd bruise, cuts, slips when shaving - and notice less on Rivaroxaban, but I know when I have forgotten to take it, I get the headaches that others have described and I never experienced since diagnosis UNTIL I was on Rivaroxaban.

[Lure2 in reply to CormorantWatcher]

Hi Cormorant Watcher,

We spoke 7 months ago and we then suggested many of us here that you should look for a Specialist and also get more info about treatment.

When you were on Warfarin you had a low range of an INR between 2.0 - 3.0. I think you earlier also spoke of a PE (?) so perhaps you should have had a higher INR, at least 3.0 - 4.0. as most people with our illness have as we have very thick blood. You said that you had bleedings when shaving when you were on that low INR. How come?

Do you have Lupus Anticoagulant? Are you diagnosed by antibodies?

Some here on Rivaroxaban also take Aspirin or Clopidogrel to feel better and make the blood a bit thinner.

Best wishes from Kerstin in Stockholm

[CormorantWatcher]

Thanks Lure. I questioned the "low" INR and was told it was appropriate to my treatment, as someone who was highly active, etc.

I did ask for more info on APS, as I was never really given much more than diagnosis. I was referred by my GP and I am currently back in the haematology cycle, but appointments take about 4 months to happen, so I've seen the initial Specialist and am due back next week.

My symptoms with warfarin were always odd. I would get therapeutic, then inevitably something else would change and it would take a few weeks to stabilise. The bigger issue for me was leaving the Army and ready access to medical professionals, the medical advice I got (from my GP) was to consider Rivaroxaban (and others, I forget the collective name). The switch process certainly wasnt instant - requiring sign off from several consultants (managing my gastro issues etc).

I have never (to my knowledge) been tested for Lupus etc, but have been wondering whether a history of UC, APS and other symptoms point at something else, but that is more for future ease of management/medication than a desire to question diagnosis.

I think/hope my appointment next week will provide more answers, as it's the follow on from my initial Haematology referral and they took a wide range of tests.

CormorantWatcher

[GinaD in reply to CormorantWatcher]

FYI: the Lupus anticoagulant test’s name persists even though it is now understood to be a test for a blood condition — like ours! — which is sometimes associated with lupus.

Also — my uninformed Enlglish major theory is that eventually the biochemistry and molecular biology will catch up to our disease and it will be found that the reason why we all react so differently to differing medications may be that our autoimmune systems target varying “dominoes” in that multi, multi-step coagulation cascade.

Since changing my diet and identifying an unknown food alllergy thanks to Cleveland Clinic I am symptom free with an INR of only 1.5-2.5. But even when my INR was 3.5 I never had a bleeding/bruising problem. I recall that during my free range small town West Virginia childhood (did lots of fun but dangerous things) I rarely bled when I skinned my knee or other cut. I interpreted this lack of bleeding as proof that I was “tougher” then other kids!

[Wittycjt in reply to GinaD]

Gina , did you have symptoms before changing your diet and what did they say your allergy was? Tia, Cindy

[GinaD in reply to Wittycjt]

I had what call the dreaded and embaressing “ brown streak syndrome.” When CC prescribed a number of pre and probiotics they explained “ just because you ‘ve been gluten free for 10+ years doesn't mean yout gut has healed. “ And indeed, those symptoms went away shortly after starting their protocol.

blood tests they run on all new patients showeed high IgG #s which they attributed to an allergy to a “high histamine food” which included tomatoes,, eggplants, potatoes, cashews walnets and pistachios. I went on an elimination/ then slow, one by one reintroduction diet and the winner was (drum roll as I prayed it wouldn’t be tomatoes-) . . . cashews! So. no cashews. But gut improvement was well worth it!

[CormorantWatcher]

Well, I know research into my 2 diagnosed conditions - UC and APS - is limited.

I also know I used to donate platelets and generally had very few health issues until UC sideswiped me (at 30ish) and then when I thought I was out of those woods I got told my DVTs and PEs weren't just down to UC, but actually APS...