Rivaroxoban or aspirin?

[Rachelthepotter]

Hi. I had unprovoked pulmonary embolisms 3 years ago, and was put on a recently NICE approved anticoagulant Rivaroxaban . Much better than warfarin or aspirin I was told. But now that Ive been diagnosed with ET/MF. ( which I think I likely had at the the time, bur no none looked for it) Ive noticed that people only mention being on aspirin. Is fhere any reason for that, apart from the fact that aspirin is a lot cheaper?

[Dianne-Guisborough]

Hi Rachel

I virtually mirror what happened to you - I too had an unprovoked PE on New Years Eve 2015 and was diagnosed with polycythemia Jak 2 + in Niv 2016 nearly a year later . This was following a routine blood test revealing my platelets and red cells were raised. I too was on rivaroxaban . Following my diagnosis my haematologist changed my rivaroxaban to warfarin as she said at this stage she wanted to be able to accurately monitor my clotting time rather than remaining on the rivaroxaban which she said can't be as easily measured for its efficacy.

I was also commenced on aspirin - as my platelets were quite raised at 840,000. I was told this was to reduce the stickiness of the platelets. It turned out I was allergic to the aspirin so this was changed to clopidegrol.

As I have polycythemia meaning both my platelets and red cells are raised I am also having weekly venesections to reduce my haematacrit ( blood viscosity) to below 40% ( it was 52% at diagnosis) . My Haematologist explained she had opted for this combined treatment because having a history of PE and confirmed polycythemia I am at an increased risk of another thrombolytic event if my blood levels and cardio vascular risk factors are not managed effectively. With this in mind she also advised me to stay as active as I could, to drink at least 2 litres of water or fluids per day, to avoid ever getting dehydrated and to keep my weight down . I don't smoke or drink and my BP is fine so no problems there!

I think it is definitely worth talking to your Haematologist regarding your diagnosis, treatment and management particularly the aspirin.

I know we are all different and the treatment for these quite rare blood disorders can vary according to our individual medical history and risk factors but I do know it's vital to ask questions and find out as much as you can about these rare and sometimes confusing blood disorders

I hope this helps. As a newbie myself to this diagnosis I am by no means an expert but just hope by explaining to you my experience it can help a little .

There are some very experienced fabulous pepes on this forum who I am sure will be able to give you some really helpful advice and support.

Love Dianne xxxxx

[Hidden in reply to Dianne-Guisborough]

I am intrigued why to get you to 0.40 or 40% as you describe? That's below the average for a woman.. do you know if this is because of something other than due to your PV? I am at a target of 0.45 and sit comfortably at around 0.42/43 and my platelets have been up to over 900 but sit comfortably around 600 - 700 with no issues so far since 2009. xxx

[Dianne-Guisborough in reply to Hidden]

They first wanted me 44% or below but changed it to 40% or below - think it was because my platelets were rising constantly. Also they said I was high risk for another thrombolytic event with previous PE plus a melanoma 6 years ago.

Kind regards

Dianne x

[Rachelthepotter in reply to Dianne-Guisborough]

Hi Dianne

Thank you very much for this. Especially the kisses at the end! Mostly I feel very grown up and fatalistic about being told I have MF. I'm 67, i've had a full life and may well have longer. My prognosis is about 3 yrs. And then somwthing as simple as a complete stranger not only giving me helpful information but also putting kisses at the end makes me burst in to tears.

I'll just deal with it as it comes .

I can now see why my haematologist looked very thoughtful when I told him I was on Rivaroxaban . He was obviously weighing up risks. Its odd having a disorder that increases both clotting and bleeding risks. I think I'd rather be on Rivaroxaban and take the risk of having a big bleed and die quickly than be inadequately anticoagulated have clots and have a stroke that left me disabled. Tho' of course a brain bleed could do that too.

Thank you again.

Much love

Helen xxxx

[Dianne-Guisborough in reply to Rachelthepotter]

Hi Helen

It is all quite complicated but I have read people's stories on here that have been living really happy lives with these illnesses for years which is a great boost for us newbies.

I've just got back from seeing my haematologist and they have started me on anagrelide to try to reduce my platelets. Every visit lately the goal posts seem to be changing but I'm lucky to have very proactive Haematologists looking after me.

The important thing for you to do is keep asking questions when you see your Haematologist, keep checking in on this forum and try to keep as healthy and active as you possibly can . I regularly check in on the forum as questions I have in my mind are often questions that other pepes have had so it is really helpful to read all the replies and advice. Plus and a big plus! You are not alone- everyone on this forum understands what each other are going through and are always so kind and supportive.

Keep positive Helen and keep asking questions .

Lots of love and positive wishes

Dianne xxxx

[tracey13 in reply to Dianne-Guisborough]

HI my husband has pv jak 2 positive he's on a daily asprin and he takes 500mg hydroxy

I read so many post with people on blood thinners then on other posts Ive read blood thinners shouldn't be used it should be warfrin.

I'm confused with all this.

[Dianne-Guisborough in reply to tracey13]

Hi Tracy

I agree it is all very complicated . Until I left work a few years ago I was a Cardiovasvular specialist sister-- and I still find this disease confusing !!

I am on the warfarin because I had the Pulmonary embolism last year so am classed as high risk for future thrombolytic events . I think if you have no previous history they don't automatically start you on the anti -Coagulant.

Best wishes

Dianne

x

[tracey13 in reply to Dianne-Guisborough]

I've had 3 DVT In my right thigh after the last intensive one and nice guidelines I'm now on rivoxaban for benefit versus risk.

I've got factor 5 leiden it's a blood clotting abnormality I was diagnosed 18 years ago. I was told the pill and pregnancy caused my first two clots and I shouldn't get another clot.

Whilst in Turkey in August 2015 after 5 days of being in the resort I have that dull feeling in my right thigh I had a feeling it was another dvt, but I talked myself out of it and flew home after another 6 days.

When I arrived home I went straight to the gp to my horror I should have been taking a tinzaparin injection before flying anything over 3 hrs.

I'm so lucky to be alive as we flown to florida 4 times.

What with my husband and his pv we make a right bloody pair.

Tracey

[Hidden]

I think the more likely question would be Riveroxaban or Warfarin as from discussion with my cardiologist I was changed between the two as they no longer needed the constant weekly blood check as needed on Warfarin. The only difference I was told was that if you had a major bleed while on Warfarin that the effect of the Warfarin on the blood could be immediately reversed with other medications but that Riveroxaban has to work its way out of the system.

[MarkD6701]

As I've got varices I was told I couldn't take Rivaroxoban just in case I have a bleed. Until they find an antidote most people in the same situation will probably have to remain on warfarin.

[Hidden]

part of me would say cost but I don't know enough about Rivaroxaban or Warfarin to comment - I have been on aspirin since diagnosis, with no issues so far, obviously entric-coated xxx