Bilateral pulmonary embolisms

[NannyP71]

I am on rivaroxaban for bilateral pulmonary embolisms, my question is as this happened out of the blue no warning signs at all, do I have the right to ask to stay on some sort of anti coagulant long term to prevent this happening again, as I am at higher risk of it returning

[WestWalesPaul]

I've had 5 dvts & 2 pe's and am on a-c's for life now.

My latest dvt, in August happened while I was taking rivaroxaban, which I'd been told was impossible. I took it every day for 6months without missing a single dose.

The dvt before, december 2013, happened while on warfarin.

I never miss any of my meds, as I take quite a lot for various conditions. So now I worry about another clot appearing... if the anti-coags don't stop them, what can I do/

[NannyP71 in reply to WestWalesPaul]

Thankyou. But do I have rights to stay on the anti coags for prevention?

[RibvanRey in reply to NannyP71]

I don't think "rights" is necessarily the right word as I think it may vary a lot with where you live. NHS England, NHS Scotland, NHS Wales are all so different these days.

I recommend that you phone BLF on 03000 030 555 during office hours. It only costs a local call even on a mobile.

They will be in best position to discuss your location and what your options are and how to proceed. HTH Rib

[WestWalesPaul in reply to RibvanRey]

I was asked at the anti-coag clinic after my 2nd dvt if I was happy to stay on anti-coags for life. That is their preferred preventative treatment after a second clot.

If you are worried, I'd just tell whoever is treating you and say you'd like to stay on a-c treatment. I don't think they'd refuse.

Or as suggested above, ring helpline & ask?

[WestWalesPaul in reply to WestWalesPaul]

Sorry, also meant to say there's a healthunlocked anti-coag group too... healthunlocked.com/ace worth a look.

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I have atrialfibrillation and I am on rivaroxaban as a preventative measure, even though I have not had a DVT. Discuss it with your consultant but my experience is that they would probably prefer to keep you on it. Have a lovaly Christmas.

[Offcut]

Question Points Your Score

Do you have congested heart disease? 1

Do you have hypertension (high blood pressure)? 1

Are you over 75? 2

Do you have Diabetes? 1

Have you suffered a stroke (even a mild stroke)? 2

Do you have vascular heart disease? 1

Are you aged between 65 and 74 years? 1

Are you female? 1

Total score

Your annual risk of stroke rises from under 2% a year with no risk factors to over 10% a year for five or six. Experts who use this scoring scheme (the CHA2DS2-VASc score) may suggest that the tipping point for benefiting from taking anticoagulants over their risks is at a score of 2 or above. However, there are situations where, even with a score of less than 2, anticoagulation may be recommended.

I have been on Warfarin since 1992 from what you have said I would think you would be long term. but your doctor should have the score sorted out.

Be Well

[NannyP71]

Thankyou. I am 43 years old, and never had DVT. There is history of clots causing strokes/ heartattacks in my family. I just think the risk of me coming off some sort of a/c is too high, especially as I had no warning and it will more than likely happen again. Since being on rivaroxaban I have felkt better than I have in years, no backache, no excessive sweating, no shortness of breath. So I really do not want to be taken off this medication and just left to go it alone and risk it happening again, I was very lucky this time ... I might not be next time