Do you need to be weaned off Rivaroxaban?

[Mouse2021]

I was diagnosed in May 2021 with a significantly large DVT in my left leg - Femoral Vein into Distal. Also multiple Bilateral PE's.

I started taking Rivaroxaban - 15mg twice daily for 21 days. 23 further weeks of 20mg once a day. Due to stop mid November.

I have had an interim Doppler which showed some improvement in my leg DVT. Other than a few blood tests which were only done only because I had a few vitamin deficiencies along the way, I have had no further follow-ups.

I am awaiting an appointment at the Cardio Respiratory Clinic- no date as yet 3 months down the line.

I had my 3 month blood review and all was good thankfully.

I have now been told by my GP I will be coming off Rivaroxaban after my 6 months treatment is completed. Also told its too dangerous for me to be on it any longer than 6 months. I expressed my concern and was just brushed off.

Obviously I am terrified to come off it. With the severity of what I had and no confirmation as to any progress whatsoever in my lungs, I would like some reassurance.

Has anyone had their Rivaroxaban just stopped after 6 months and what was your experience?

I have read you need to be weaned off Rivaroxaban in a controlled manner and must not stop it cold turkey.

Would greatly appreciate any advice. Thank you.

[Hidden]

Hi Mouse2021, purely as a layperson, I'd say that there would be absolutely no point in 'weaning off' Riveroxaban. For it to have any useful effect it needs to be taken regularly and quickly loses its efficacy (after a few hours) if you stop taking even one tablet. So the question really is, "is this the right time to stop taking Riveroxaban?" If you are unhappy/unsure that this is the case, you should try to set your mind at rest by talking about this with your GP and explaining your anxiety around stopping. You are owed that much at the very least. If you are in the UK then I know it's currently quite hard to arrange even a phone consultation, but you should never be left worrying about any situation in which you've been left feeling you were fobbed off.

[Mouse2021 in reply to Hidden]

Thank you for your reply.I understand once stopped, blood returns to "normal" consistency within 24 hrs.

My concern is will I have any horrific withdrawl symptoms?

If I have any clots still in situ, will they start to "grow/build" again?

I asked my GP they said absolutely not. I'm not convinced hence I am getting a second opinion.

Might I add, GP had little to no concern about my anxiety with regards to any of this, didn't want to know. Shocking.

[Hidden in reply to Mouse2021]

Hi Mouse2021, No, don't worry, there aren't any side effects to stopping your Riveroxaban but you clearly have questions and I think a second opinion and some proper reassurance are the way to go. We shouldn't be left after a consultation with any of our questions unanswered and it's a great pity that you were.

[Hidden in reply to Hidden]

I remember when I was due to be finishing my initial 6 months of rivaroxaban and I was terrified and had talked it over with my gp and she had said yes I was best to stay on it and that I have done and have had no problems with them.

[Mouse2021 in reply to Hidden]

Thank you for your reply.My GP has told me I have to come off them so I have no choice.

I hope you are better now.

[Brighton58]

MY GP told me you can come straight off Rivaroxaban and I did with no adverse effects. I am now taking Grapeseed supplement and other natural blood thinners.

[Mouse2021 in reply to Brighton58]

Many thanks for your reply. 👍

[Penpop]

Hi Mouse 2021About 4 years ago I suffered a similar dvt and multiple embolisms in both lungs. I took Rivaroxaban for 6 months then stopped as I was told I only needed it for this period. Only three days later I felt out of breath and my heart racing and was again taken off by ambulance to hospital. I had again multiple embolisms as a result of stopping the blood thinner abruptly. I am now on Rivaroxaban for life.

[Mouse2021 in reply to Penpop]

Thank you for sharing your experience Penpop. This is exactly why I am getting a second opinion as I don't think 6 months is long enough. Although I have no choice if my GP won't prescribe it.

May I ask, did you have any time off work through all this and if so how long?

Sincerely hope you are better now.

[MillaZ in reply to Mouse2021]

I think getting a second opinion is an excellent idea.

I had a similar experience to yours, and after the initial 6 months, the second specialist I met with said I should continue with Xarelto (AKA Rivaroxaban) for a little longer. That 'little longer' became a total of 18 months.

I came off it 2 years ago, abruptly, with no real side effect. The only 'side effect' was that for a time my dreams were always about finding myself in situations where something was always missing from reaching my home: for example, I was going home from work and realised I had no money for the Tube, or I was walking in the woods on my way home and realised I had no shoes on. I was told it was probably my subconscious that was 'missing' the safety of taking the anticoagulant (if that makes sense).

[Mouse2021 in reply to MillaZ]

Thank you for your reply MillaZ. I have had very vivid "dreams" since taking Rivaroxaban anyway so wouldn't be a shock. Lol. Hope you are now feeling much better.

[Suebo2 Moderator]

Not read all the previous replies but as a thrombosis nurse it is hard to give you definitive advice without knowing the whole story. Your initial question- do you need to wean off rivaroxaban- is simple to answer- you should be fine.

But

There is a question about stopping at all - depending on why you had a clit in the first place and, if a clear reason why clotted abd that risk has gone, you can safely stop. If ongoing risk the. Perhaps need to revisit.

My advice would be to stay on it until you have had a discussion with a thrombosis specialist and looked at risks on both sides- clotting and bleeding- and understanding the decision made.

Good luck.

[Mouse2021 in reply to Suebo2]

Many, many thanks Suebo2.

I have consulted my GP Dr again and he "cannot offer me an appointment or referral" but has agreed to "seek further advice".

That was over a week ago and still heard nothing.

Still awaiting Cardio Respiratory Clinic appointment and untiI I have some sort of confirmation I will be "safe", the battle for the Anticoagulant will continue.

Your input has been of great importance to me so thank you.

[moo196]

I was on warfarin for 2 years for a blood clot on the brain. Then we decided that it was best not to be and my consultant suggested I could just stop.I was terrified so asked him to write me the reasons why I was stopping ie Risks outweighing the benefits - so I could look at them anytime I was scared.

I distracted myself with a trip to India 🇮🇳🙏

Hope you get on OK

[Mouse2021 in reply to moo196]

Thank you 😊

[highlander777]

hello - I had a similar thing to you , large DVT in my left leg - Femoral Vein into Distal. Also multiple Bilateral PE's. but in the right leg . I was put on Rivaroxaban and stayed on it for 18 months. I then went to see a blood specialist who ran a load of blood tests which all came back negative , so I came off Rivaroxaban and I was ok for 2.5years then suffered another clot in my leg. so I am now on Apixaban as they put me back on Rivaroxaban but I was having stomach issues ( never had them in the past) . Given the Covid and sticky blood issue , I am staying on the thinners . Given the extent of your episode, I would consider staying on the thinners a bit longer

[Mouse2021 in reply to highlander777]

Thank you for your reply.I too have sticky blood.

Just very concerned being taken off meds as unprovoked and no follow ups as to what has caused it. However, battle is with the GP who says I have no option as too dangerous to stay on it. So just like that, it's a matter of getting on with it and hoping no reoccurrence.

Good luck to you and hope you are a lot better now.

[highlander777 in reply to Mouse2021]

i would ask the Dr to define Dangerous. Having a PE is very serious

[Suebo2 Moderator in reply to Mouse2021]

As your DVT was unprovoked you should have had some standard investigations. See NICE guidance on unprovoked VTE.

[Holliemorris]

I coildnt help, but im the exact same in may 2021 although it was my right left, exact sake diagnosis although i was pregnant and nearly lost my life i was rushed for an ivc filter to be inserted then blue lighted to the RVI in newcastle to deliver my daughter via csection, they said im lucky to still be alive, i was on enoxoparin sodium 100mg daily then was transferred on to apixaban 5mg twice daily after the removal of the ivc filter. Carlisle have saidi can stop cold turkey on 5th november as thats 6months from diagnosis however RVI want to review me.. Im refusing to come off my blood thinners unless i have the all clear through tests.

Id try get a second opinion..

Hope youre well

[Mouse2021 in reply to Holliemorris]

Hello Holliemorris,

I'm sorry to hear of your ordeal.

But glad you are both safe. X

Since my last post, I have strongly aired my view to GP and they couldn't offer me an appointment but did a written referral to seek further advice from a Haematologist.

I will find out response 06/10/21 as have a telephone consultation booked with GP Dr. Fingers crossed.

Hope you're feeling much better now. X

[Saintchief]

HiYou need to find out if you have a blood condition? I had dvt in right leg nearly 6 years ago docs only scanned my leg. turns out have Factor 5 Leiden. Put on Rivaroxaban for 6 months then took off them. Roll on to this August ended up in A&E and stayed in hospital whilst on holiday in UK multiple PE on both lungs after CT scan. 2 different acute medical doctors couldn't believe I was still not on medication and also I was never CT scanned on lungs previously. All under investigation now. Keep asking questions and don't get fobbed off.

[Mouse2021 in reply to Saintchief]

Thank you Saintchief. X

Since my original post...

GP Dr advised taking me off Rivaroxaban mid November as that would be 6 months treatment as initially prescribed. I asked for a second opinion and Dr has communicated with a Haematologist who looked at my initial scans when first diagnosed.

It has come to light that there is sufficient evidence from the scan that this is a recurring episode and in view of that, decision has been made to keep me on meds for life. No screening is apparently required as to why...

Rather a shock as I had no idea.

I am still awaiting Cardio Respiratory appointment to define extent of damage.

Keep strong and wishing you well. X

[djbailey]

There is a NICE document giving guidance on patient management with DVTs. MY GP was very good at following the guidance and she tried to book lower abdominal scans as recommended in the guidance at that time. I worked at the hospital where the scan was requested and the radiologist rejected the request with no reason why. I was annoyed that my GP could request something and then someone that had never seen me or reviewed my history could determine whether or not I needed a test. My GP said it was pointless complaining and just requested the scan at another hospital which was duly completed for me.I was taken off Warfarin after my first 6 months treatment and then after two Dopler scans due to feeling like I had a further problem was identified as having a clot in the Popler vein behind my knee and so was put on Edoxaban for life.

There is a published NICE patient pathway for a reason and it should be followed.

[Mouse2021 in reply to djbailey]

Thank you djbailey. I would be interested to read that so will take a look.

Sadly, we all know the current state of appointments in England...

Had I not have pushed, very strongly might I add, for this second opinion, I would have been taken off my meds. I have been told throughout this journey that it is not commonplace to rescan. So I strongly doubt I will get any more.

I have no idea what they will do at the Cardio Respiratory appt so may be lucky and something might be done, I don't know.

For now, I feel a bit of reassurance knowing my meds aren't being stopped as it could have been a very different story.

I am concentrating on getting as healthy as I can be again and getting back to work at some point. My GP is deeming me not fit for work still and with sufficient evidence of it being a recurrence, I need to have my Respiratory appt before I return to work. (I've been off since May).

Some small improvements but still very much taking things day by day.

I appreciate your time in commenting.

Hope you are better now.

[Seraphine2021]

Hi MouseI had similar diagnoses in 2012 and 2016. Because I was still working in 2012 and the treatment of choice was then Warfarin. I persuaded doctors to let me give myself heparin injections fo 6 months. At the end of this time I was just taken off this - no weaning or even ultrasound. In 2016 I had the same problem - large. DVT and PE it this time I was living in France . I was given ultrasound and scan and by this time Xerelto was approved for use. They also sent off blood to find out if I had the gene that makes you more likely to clot which it turns out I don’t have so I was taken off the medication after 6 months. I expressed concern too but just got the shrug. I have a worryingly large family history of clotting and strokes so I set about finding a herbal alternative and found Nattokinase which is a natural anti-platelet supplement. I started taking this after I came off Xerelto and was fine until I developed two general DVTs and bi-lateral PE last month when they finally put me on erector for the rest of my life. Here they are now recognising other genetic factors that can cause this type of clotting and are looking into that for me. You have a right to ask for further tests to identify why you developed these serious and life threatening clots. It is not unreasonable to insist on this before just being taken off the medication. I had no after effects from stopping the medication at all but the long term implications deserve further tests.

Good luck.

[Mouse2021 in reply to Seraphine2021]

Hi Seraphine2021,

Thanks for sharing your story.

Don't know if you've read my previous post....

No update since as still yet to have my Cardio Respiratory appointment.

GP are not focused at all on the why it happened now there is sufficient evidence of a recurrence.

When I asked about being screened, it was a blatant "not required".

Getting anything out of the NHS at the moment is like digging for gold sadly.

I am grateful for the ongoing Xarelto despite the side effects that go with it. For now, I'm focusing on getting well and just cross everything that the meds keep any further episodes at bay.

Maybe when I actually get my appointment it might shed some light. After though, I will look into getting screened privately but cannot afford at moment.

I appreciate your reply so thank you again. Be well and take care of you.

[Seraphine2021 in reply to Mouse2021]

I feel for your situation in the UK. I used to work for the NHS and really major decisions should not be left in the hands of GPs many of whom border on incompetent tbh. You have a right to be referred to someone specialising in the field and if not complaints should be made as these things can be life threatening. Although not perfect here in France, it is much better than that and I feel at least looked after and cared about. We all understand the pressure that has been put on the system by Covid but my family in the UK tell me that it is not even possible to get an in-person appointment with GP now, which is dreadful and asking for disaster. If people don’t complain the slow steady decline will continue until the NHS is sold off to private enterprise (which is probably the plan) but how many people will have suffered by then?Xeralto is fine as a prevention but it does not break down clots - that is left to your body to do and after a scan after two months, I still have a clot in my left lung which is terrifying. I am not convinced that medicine anywhere is dealing with these problems as well as they should.

I am glad that you are feeling safer now that you are staying on the Xeralto - hopefully you will be fine now. Best of luck.

[GW08]

I am on riveroxaban for life due to having facter V leiden which caused DVT and PE not been told its dangerous long term hopefully is not the case as I want to live a lot longer

[Mouse2021 in reply to GW08]

Strangely GW08, I take some comfort in taking the Rivaroxaban.Despite not being our choice, the Rivaroxaban deserves respect, especially for those of us that require it lifelong. I am only 46 and want to live a lot longer too for sure.

At least you have an answer as to why you had the experience you did.

Having had no screening and unprovoked repetitive episodes, I am a bit frustrated by it all to say the least. When I can afford it, I will get screened. GP's in England are currently useless.

Keeping positive plays a huge part I believe, not only during recovery but also in moving forward.

Stay strong, try focus on enjoying life and spending quality time.

Wishing you all the best.

[Mouse2021 in reply to GW08]

GW08... Forgot to mention, when Haematologist advice was to stay on meds and my prescription was changed by my GP without hesitation, I did ask the question about taking Rivaroxaban long term being dangerous and was told its fine in my circumstance.If you're unsure, speak to your Dr for reassurance.

Everyone's experience is different after all.

I believe "what will be will be".

[GW08 in reply to Mouse2021]

Great attitude wishing you the very best for a long and happy life

[Mandylor]

I just started Xarelto last week due to 2 high d-dimer tests in October and November. Had a CT scan of my chest and ultrasound of left leg. All negative, but d-dimer rose and I’m high risk. Im scared being on it with no evidence of clots. Doctor said they could be micro clots so it’s preventative. On them for 3 months. Did you go for regular blood testing initially? And any symptoms on Xarelto? Hope you are feeling better now!!

[Mouse2021 in reply to Mandylor]

Hi Mandylor,

I initially started off with injecting Tinzaparin as a preventative after an exceedingly high D Dimer result. (I didn't get my scan and diagnosis until 5 days later...)

3 months is a standard course. Rivaroxaban doesn't need regular monitoring like some other anticoagulants.

I had a blood test after 1 month just to check all was going in right direction and another at 3 months, but must say at that point I knew I'd got at least a 6 month course. I'm now on it for life.

Side effects differ for each person. You might not get any at all.

I had really vivid dreams and still do.

But nothing one should worry about.

My advice is, be consistent with times of day you take it and eat before and after (eg. during an evening meal).

I suggest if you have any concerns and it's worrying you, speak to your GP.

Good luck to you. All the best.

[Mandylor in reply to Mouse2021]

Thank you for responding! I’ve been so scared. The worst thing I’ve had is dizziness (feel like I’m walking on the ocean) and head pressure/fullness. Not sure if it’s the Xarelto or what. But I hate the feeling so much. I also hate not knowing why this is happening. Doc said it might be micro clotting.I’m taking with dinner. Any medicine/supplement you were advised to stay away from. The doctor hasn’t been super clear about that.

Thanks again Mouse! Hope you’re feeling well!

[Mouse2021 in reply to Mandylor]

Hi Mandylor,

I was advised no Ibuprofen which used to be my "go to" if required. Now I just take Paracetamol if I need to.

No activated charcoal which I also used to take.

I was healthy and fit prior to this so all been a learning curve for me and still is in terms of managing a healthy diet, adaptations etc. I used to eat what I wanted, when I wanted. Has definitely made me more mindful. I completely lost my appetite at the beginning. Still have "off" days, but requiring food with tablet helps motivation to eat.

Your Dr should have done a medication review with you if you're on anything else. If not, request one. Do not be fobbed off, be persistent. You must mention also with your GP if taking any other supplements and they will advise you further.

Hope this helps. 😊

I'm improving slowly thank you. Recovery ongoing.

Look after you. X

[GW08 in reply to Mandylor]

No adverse symptoms in the 3 years that I have taken the drug hoping that continues