Rivaroxaban for blood clots - British Lung Foun...

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Rivaroxaban for blood clots

I am wondering if anybody is on them I have just started them about 4wks ago but don’t know if they are doing me any good or not so I am just trying to see if anybody else is on them

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Hi Jimmy

I have been on them for a few years and have had no further problems. I was monitored closely for the first year as they were a new drug and not widely available but here we are and alls well.

Good luck

Patsy

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Thanks for your help

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I had my first deep vein blood clot last Tuesday and was given Xarelto which is the brand name for reveroxaban. It is the standard of care for DVTs. I feel like a ticking time bomb so scared a clot will break off ang go some place vital. Anyone else worried like I am?

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Presumably you need an anticoagulant. The only way you can tell if it is working is if you don’t have a worsening of the condition that needed this medication.

In my case I am on Warfarin for chronic thromboembolic disease, it prevents my getting any more pulmonary emboli but it does nothing to alleviate my symptoms. Were you expecting that rivaroxaban would in your case?

Are you happy to explain a little more about why you are on this drug?

Sorry, I am always curious about people’s Illnesses.

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My consultant says he putting me on them for six months as I have some clots on my lungs he did not say much more but said they will help

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Thanks. Do you know what caused the clots? Anticoagulation stops any more clots happening but does not “dissolve” any clots in your lungs. But our bodies are brilliant at doing that. The system moves into clot-busting mode and beavers away to clear the debris. Which is why 98% of people who have PEs make a complete recovery. Unfortunately I was in the 2% group and now have chronic thromboembolic disease. I will be on anticoagulants for the rest of my life. Are you happy to give me a little more history? As I said I am always keen to compare notes with others in the same boat.

K

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I will know more on Thursday when consultation takes place when he will phone at 2 it is a new scheme when consultants phone to see how I am doing and any questions I have to ask him it is 40 minuets long he seems to think otherwise but I will keep you updated on how things get on

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My husband takes these. He was put on them following an operation called an ablation which he had for an atrial flutter. His heart rate was very high and did not respond to medication to slow it necessitating the ablation. He's had no further problems and his heart rate is normal but continues to take the Riviroxiban which the consultant prescribed.

Corin

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Hello Jimmy. Nice to converse with u. I had a blood clot in my lung in December 2017 and they put me on RIVAROXABAN then. I have not had any side effects that I know of. I was told that I have to take them for the rest of my life. I must admit I just resided to the fact that that’s how it is. The blood clot I got was after having surgery on my hip and as it was the second clot that is why they put me on it. Hope all goes well for you. Best wishes, Roy.👍🤓

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Thanks for your support

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Yes, I am on these (about 2months). Not noticing any problems so far. Saw the cardiologist on Friday- he seemed happy enough with my readings.

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I had a blood clot on the lung last November but I’m on pixaban I think it’s called. Haven’t noticed any difference being o n it. Just had my CT scan to make sure there are none lurking and waiting for my appointment with consultant to see how long I have to be on these for. I must admit I’m scared of having another as there was no reason for this one. No surgery not inactive just came out of the blue.

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I was on warfarin for 30 years with very regular tests, after a knee replacement op I had a clot. It was decided to put me on Rivaroxaban. Blood test every 6 months. That was 3 years ago and no clot but I did feel more assured with regular thrombosis test. Jane

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Had mini stroke about 2 years ago and been on these ever since. It added to lots of other medication I take and I am not aware of any ill effects. Problem is to stop bleeding once you start. Last year I spent 3 days in Exeter Hospital tying to stop a nose bleed which happened during a rehab exercise course. Day to day cuts also bleed endlessly since taking Rivaroxaban just have ;lots pf plasters handy.

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Hi Jimmy,

Do you you know if you have an underlying cause for the pulmonary embolisms you've had, or did they occur due to being very immobile, or having been on a long haul flight etc?

Katinka46 has mentioned she has Chronic Thromboembolic Disease, has this or any other clotting abnormality been mentioned to you, as the reason you have had your lung clots?

I am only asking this because the new NOAC anticoagulant meds like Rivaroxaban are great and eliminate the need for having your blood INR regularly tested. However, if you're someone who needs to maintain a higher INR level, were you to have been put on Warfarin instead, then they are not suitable.

Claire.

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Thanks I will ask him on Thursday you and everybody else has kind made me bit more happier with all your answers thank you

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I don't believe you have anything to worry about regarding taking Rivaroxaban, it works very well for any patient who only needs an equivalent INR of 2.0-2.5, when taking Warfarin.

There is a clotting disorder called Hughes Syndrome /APS, which is an autoimmune condition, where certain antibodies cause the blood to become very sticky. The chances of you having this condition are rare however if you do have this condition, then the new anticoagulants like Rivaroxaban are not suitable for you. Perhaps check with your doctor during your appointment, to make sure that you don't have this condition.

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I have been on Riveroxoban for about a year, following unprovoked PEs second time around. I have had no side effects and so much better than Warfarin with its copious blood tests. I was given apixaben initially but experienced leg pains so asked to be changed to Riveroxoban. I have been told I will be on it for the rest of my life.

I hope it suits you too.

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I hope so

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