Blood Clots

[Mgtrob]

First I would just like to say Hi to all my new followers.

Has anyone who suffers from WG and has a thrombosis been taken off their blood thinning medication? I was talking to a young girl who has several in each lung and they stopped her meds three months ago? Is this safe? Has anyone ever been prescribed xarelto 20mg rivaroxaban?

[rubysue]

Hi Mgtrob sorry but I carnt help as none of these things apply to me I take asprin and warfarin but I would think her Drs would only do what is best for her.

Hope you get more positive replys from more informed members .

Take care RUBYSUE

[Mgtrob in reply to rubysue]

Thanks for the information. x

[Suzym2u Moderator Vasculitis UK]

John suffered a thrombosis 9 years ago this Spring. Caused by his GPA (WG). He was given Heparin injections to begin with followed by Warfarin. He has taken the warfarin in varying doses for the last 9 years and no one has suggested he stop.

Rivaroxaban is an alternative to warfarin. We have a friend who is taking this newer drug, but he does not suffer with a WG, he takes it for stroke prevention.

I believe the advantage of Rivaroxaban is that the patient does not need the regular INR tests.

I do know one young man who was gradually weaned off the warfarin but he has a different type of vasculitis and does not have WG.

Not sure if any of the above helps. But you can talk to John anytime if you would like to know more detail. He has the medical background not me. His email is [e-mail]

[Mgtrob in reply to Suzym2u]

Yes it is helpful Suzym2u - my son had the Heparin injections but they did not dissolve the clot . His Consultant is talking about taking him off Warfarin and trying another drug. However, my son is reluctant to try another drug.

[Hidden]

certainly patients can be taken off blood thinners, like everything else it's a risk V benefit decision which requires knowledge of that persons medical history and the likelihood of another thrombus.

Rivaroxaban is a newer anticoagulant, as Susan has said it doesn't require INR blood tests but there is no antidote to it ( unlike warfarin ) which makes some patients reluctant to take it and some Dr's reluctant to prescribe it!

[Mgtrob in reply to Hidden]

Thank you for your helpful reply.

[Mgtrob]

Thank you for your help.

[Chris-Bromsgrove]

Hi, I don't have WG, I have MPA. During my initial treatment I developed a blood clot below the knee. I was given Enoxaparin initially then Wafarin. My consultant believed the clot was caused by either the cyclophosphamide or the Vasculitis. However after about a year I was taken off the Warfarin. That was nearly three years ago and so far no problem. Chris

[beljac]

Good day, my husband has Wegeners. He was diagnosed 4 years ago and yes he was on Warfarin for almost a year after his diagnosis but is now on 81 mgs of aspirin and is doing great. I am literally shocked at how long your husband has been on the heavy duty blood thinner. How often do they check his INR? Having the wg must be hard finding his veins as he has a vasculitis disease.

Best of luck to you and your husband. Bella