Anticoagulation UK
2,323 members842 posts

New to rivaroxaban feel lousy

Was diagnosed with a PE on Monday and the hospital put me straight away on Rivaroxban. They mentioned how they were trialling antidotes. But I feel lousy on this drug. Feel very faint and weak, I will be going to my GP on Monday to switch to warfarin as I never felt like this whilst on warfarin after a DVT. Anyone else change? How did others get in with rivaroxaban?

49 Replies
oldestnewest

Sadly, whatever drug you are on, you're likely to feel rotten for the next few weeks, but it will pass. A PE really knocks one for six, and it seems to take far longer than it should to feel better! I should give rivaroxaban a fair try - once you have had the first three weeks and are down to 20 mg once a day, you won't know you're on it!

1 like
Reply

Thanks for the reply. I never felt this faint when I was on warfarin. I know now I'm on blood thinners for life, but I'm not sure I can cope with the faint and dizzy feelings of rivaroxaban. How did you get on?

Reply

The faint and dizzy - as much as I had them - was due to the clots, not to the rivaroxaban! I had slight indigestion when I was on the 30 mg per day, but, as I said, I don't know I'm on the reduced dose - no side-effects whatsoever! You will probably find the same as your system gets used to them, but it is worth checking with your GP in case they think you should change. The joy of the modern anticoagulants is that you don't have to have regular blood tests, or avoid certain foods, or basically do anything special!

Reply

Yeh, I hated being on Warfarin at the time. I guess its also the lack of available antidote. If they had one, I might try and muscle past the dizzy spells but I just hate feeling like i'm in a fog. My clot is only very small, its more the blood infection that has caused me the issue. Feeling a wee bit unlucky right now.

Reply

What is your dose now?

Reply

The maintenance dose of 20mg a day. I had to take 15mg twice a day for the first couple of weeks - I forget now whether it was two or three weeks - and since then have been taking 20mg per day, one tablet after breakfast! You do have to take it with food - I expect they stressed that to you - and it's thought not to be a great idea to have grapefruit or grapefruit juice (but that's the same with most medications). I do remember feeling awful at first, but I was also on horribly strong antibiotics - the kind you have to be careful not to drink nor to go into the sun with! Awful, as there was a family party, and they didn't have any decent soft drinks, so I was reduced to water with a slice of cucumber in it!

Reply

I too felt terrible when they first gave me the 20mg pill of Xarelto (AKA Rivaroxaban) for my PE (which, in my case, is massive). In fact, I felt so weak and lousy I could not walk without using a walking stick (and I am only 45!). I was also worried about the fact that there is still no antidote -my husband even warned me about the law suits happening in the US re: bleeding.

However, the idea of having to go back on Warfarin and have to have blood taken out twice a week and the special diet you have to follow when on it made me continue with Xarelto and now, after 2 months, I am the happier for it. I feel a lot less weak, I use the walking stick only when I walk in the woods (I live in a mountainous area and the paths are quite threacherous at times). I can eat what I want (in moderation, obviously) and I don't have to worry about hospital appointments. In my case, I think Warfarin would have restricted my life a lot more.

As for lacking an antidote: generally speaking, I think life is also about managing risks, so I am super careful when, for example, I am using knives or when I am doing something in the garden. Of course, some risks cannot often be controlled (such as, for example, a car accident) but such is life.

Reply

Yeh at 37 I'm feeling a bit down on my luck. I'm hoping that due to my levels of activity my dosage will only need to be a small one. Warfarin can be restrictive but I always felt in control, with this I dont. It feels like there isnt quite enough info out there

Reply

That stinks being 37 and having that happen!

Reply

I doubt it’s a side effect of medication and could just be the PE - rivoroxoban got a good safety record and less side effects than warfarin and of course less need for monitoring - maybe just pursue for a bit longer to see if symptoms improve

Reply

No, its definitely the drug. My PE was a bit unlucky, and was only small. The only side effect I had on warfarin last time was nose bleeds.

Reply

You could try another nowac such as apixoban I’m sure your GP wouldn’t object rather than go onto warfarin

Reply

why do you think GPs are so keen to avoid warfarin? The new stuff while it seems to have a positive beginning are still new and therefore dont quite have the body of evidence

Reply

Hi, I was on warfarin, it was an absolute pain with repeated blood tests & dosage up & down, 15mile round trip to GPs, probs getting the blood (3 or 4 attempts each time) now take rivaroxaban 20mg & it's hard to believe it's so easy though I must admit I have wondered if it's too easy? How do they know it is right or is it just that warfarin was sooo bad!

Reply

Yeh, every dr keeps pushing how much safer it is, but those tests were done on 80yr olds. I'm not 80, the way things are going I'd doubt I'll get there. But I seem to be reacting to it

Reply

Please don't be like that, you wouldn't want my life at present - in a nut shell - hubby in hospital been home twice (3 wks in total) & back in since 22nd October, me in day surgery tomorrow so had to stop rivarox. cancer was Dec 2016 but still can't eat so surviving on Fortisip drinks, they took my teeth out (here's a laugh) & my mini yorkie (in pic) has stolen 'two' bottom dentures so am at dentist on Friday - third time lucky! I'm not fit so hubby can't come home until care plan in situ but hey some have it worse, keep trying Ed I'm sure there is an answer out there for you

Regards, Jackie

Reply

Thing is you want a life not some miserable old existence!

Reply

The problem I have with anticoagulants is that its a major life change, which will mean I'm less active. I don't enjoy jogging, I enjoy lifting very heavy weights and pushing my strength, but I now risk haemorrhaging if I do this. Its a major lifestyle change based on little evidence other than a small clot caused by infection.

Reply

I like walking so there was no problem with that.

I was really cross though about that crap surgery and when I complained they lied and said they had asked me to contact them when I received my march prescription but I never received anything and they struck me off the list all because I complained and I was also shouted at there by a male gp which is most unprofessional!

Reply

Yeah I totally agree personally I'm pretty fed up with my existence at present, social life is made up of appointments which is certainly not 'a life'. We are all different and one for all doesn't exist, all I was saying to Ed was that there is an answer out there and its clear it's not rivaroxaban. Kind regards

Reply

I am sure you are correct in suspecting Rivaroxaban to be the cause of your dizziness etc. i suffered so badly with faintness when I was taking it after a massive PE and a DVT that the specialist tried Edoxaban. This was just as bad, but as soon as my GP prescribed Apixaban the dizziness disappeared, almost overnight. I am on the drug for life, so I am very relieved. I also found that Rivaroxaba caused me to feel very depressed, whereas this also wasn’t the case with Apixaban. It isn’t perfect, ut it suits me .

Reply

I had a pe back in December and they started me on the 15mg rivaroxaban twice a day for 3 weeks as well which I found difficult but persevered with it and things are a lot better now I am on the 20mg once a day as once you have taken it you can forget about it for the rest of the day then.

Reply

The risk of no antidote concerns me. If they had one I might persevere but I feel very limited by this drug

Reply

Are there any who have switched? What has been your experience?

1 like
Reply

I was on coumadin for the past 6 years and they switched me to rivaroxaban about 3 months ago. I couldn't get the inr stable so they thought it was best. So far its ok. I do get nervous when I think of no way to reverse it. But in general I feel alright and not having to go to the dr all the time is cool. I was nervous but it hasn't been too bad so I guess I will see in the long run.

Reply

How did you get on with the warfarin, long term? I was on it 6 months previously, and had the issue of stability but I think I will purchase Coagucheck INR tester so I can take more control of it

Reply

I loved it I never had any problems. Within about 6 months of my dvt I was pretty stable and didn't have to see the dr much. But the last maybe 4 months on it my inr was all over the place so I wanted to get a tester too but they are so expensive. My dr said he would have changed me anyway because I was fluctuating way too much lately. So now I'm happy about not having to spend that money on a tester and see him so often (just once a year now instead of sometimes every 3-4 days). But it is unnerving to see those xarelto lawsuit commercials on TV lol. But really so far so good.

Reply

Hi , I had a small clot and was feeling tough for a good 3 weeks, which I was tpld was normal. I was injecting everyday for 3 months, after 3 months I decided to try xaltro, and after 6 months taking now so far so good, everyone different, so if you fell its making you feel like that talk to your doc ,but as its only been a week, small or not small, you will have effects while the medication gets to work, as for antidote, believe it or not after not taking for 36 hours, the drug no longer has the thinning effect.

Reply

Yeh I feel like I'm in a mental fog with it. Get very dizzy and faint at times, just don't like how I feel with it

Reply

I also have a PE & a DVT and take warfarin and I’m totally fine my INR is stable. Hope you get sorted.

Reply

Thanks have you tried the new stuff?

Reply

No just warfarin.

Reply

Maybe it's some sort of allergy that is kid of scary if it continues you should tell your dr. So why are they putting you on rivaroxapan instead of coumadin now? Is it just because they feel that you need it for life and it's less monitoring? Because if I could stay on coumadin I think I still would. If i had the choice at this point.

Reply

Yeh I'm gonna chat with my GP tomorrow, I just don't feel right.

Reply

I was on warfarin for nearly eight years then in 2016 got cancer & had to stop warfarin because of treatment was injecting heparin for around 5 months then started on rivaroxaban just about a year ago, as said not had any problems just a bit suspicious that it's too easy. Hope you get sorted & soon feel better.

Reply

If I didn't feel so dizzy I would carry on, but I just find my head is spinning, even whilst sat.

Reply

Hi Ed, I wouldn't be too quick to jump back to warfarin but having said that there are alternatives, perhaps rivaroxaban just isn't the one for you, dizziness IS one of the possible side effects listed in the 'When should I seek advice from my health care provider' so I would certainly go back to your gp & see what they recommend. I really wouldn't wish the warfarin regimen on anyone especially if it's for life (yep, that's me), so as previous hoping you get sorted quickly & start feeling better, please let me know.

Kind regards, Jackie

Reply

Making the switch to warfarin, will happen on Wednesday. The side effects of Rivaroxaban were too much for me. Just got to hold out until Wednesday. My mind has also been put at rest as well, as I feel there is a greater level of care.

Reply

Hi EDBrae, I was wondering how you are feeling now, if the switch from Xarelto to warfarin has gone as smoothly as you had hoped for...

Reply

I feel a lot better, in fact Ive been able to drive now. No longer feel dizzy or faint. In fact I feel better!!

1 like
Reply

I've been on Rivaroxaban for a year now after a PE in both of my lungs . I've had no side effects what so ever

Reply

I'm glad to hear that. I had a terrible experience with it, so it wasn't for me. I'm still not convinced about the drug yet, there seems to be other motives at play

Reply

Apixaban was given to me after one day on rivaroxaban. No real problems except two gout incidents.

Reply

I had a DVT and PE last June and tbh I think it’s the impact of the PE. I was off work for 4.5 months and was shocked by how awful I felt. On the Sunday I had walked the dog 8 miles but when I got home from hospital the following Friday I couldn’t get out of the car. Think that lousy feeling only left me after about 9 months, so u have to take it easy and listen to your body.

Reply

I came off riveraxban, the side effects stopped immediately. Most definitely not a drug for me

Reply

I switched from warfarin to rivaroxaban and it was the worst thing I did. Felt very unwell on it and switched back to warfarin which suits me better. Everyone reacts differently.

Reply

they do, what bugged me is that the hospital just stuck me on it without talking to me first or giving me options. They also said no side effects, which wasn't true. I think its always better that Drs are up front and honest with drugs, as its a big decision to make

Reply

Yes, that was mean of them saying no side effects - they are rare, but people can be allergic to it, and need to use something else. The very nice nurse prac I saw just before I was discharged from hospital told me that serious allergies are much rarer now that they know what to look for and who not to give the drugs to, but they can still happen, and bad side-effects can still happen (as with any drug). Rivaroxaban suits me, but obviously it wasn't for you! Hope you are feeling much better now.

Reply

Hi Ed so pleased you are feeling better, I didn't have a problem with warfarin but was taken off it and had to inject heparin for 6 months after which was given the rivaroxaban which thankfully have been ok for me. I wasn't asked or given any information other than 'it will save you from all the blood tests' so I know what you mean just glad you're having a better time of it now.

Regards Jackie

Reply

You may also like...