Newly diagnosed. Rivaroxaban - In shock! - AF Association

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Newly diagnosed. Rivaroxaban - In shock!

4optimistic
4optimistic
62 Replies

Hi, Just been diagnosed with paroxysmal atrial fibralation and on my third dose of Rivaroxaban 20mg. This is now on top of several other medical issues including really bad GERD. I was diagnosed in A&E after an hour of palpitations on Friday night followed by three hours on Saturday morning. Called 101 and they sent an ambulance round. The palpalations lasted for another 3-4 hours and was fully recorded on an ecg. Bloods all ok and pulse in normal range. The A&E doctor has referred me to the AF clinic.

Can anyone tell me what I should do next for some peace of mind?

Plus The list of side effects from Rivaroxaban looks horrific. Has anyone been on this drug and can tell me how they faired?

Any inspirational comments gratefully received!

Kind regards to all

62 Replies
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BobD
BobDVolunteer

The alternative of an AF related stroke is far worse! Go to AF Association website and read all you can then come back and ask any specific question. AF is not life ending but life changing and that can be for the better. We have all been where you are and yes it is scary. The unknown always is so educate yourself here and at AF Association as knowledge is power.

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4optimistic
4optimistic
in reply to BobD

My first post and first reply. Big thank you BobD. It is short, to the point and full of wisdom. The replies which have followed have been overwhelming in their compassion and outpouring of kindness and concern for a stranger. Bless you all.

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Finvola

Hello and welcome. Diagnosis of AF is a kick in the teeth, especially if we have been tootling along happily healthy. Rivaroxaban is one of the modern anticoagulants prescribed to lessen the risk of a serious AF related stroke. If you read the side effects of any drug or preparation you really wonder how anyone uses them and survives! Legal requirements stipulate this in fear of litigation.

The next step is the AF clinic and you can prepare by reading and asking questions as Bob has suggested. It’s probably true to say that all of us were somewhat bewildered and concerned at diagnosis but with knowledge and the right treatment plan, life does get back to normal - just different.

I would strongly advise you to read up on lifestyle changes - foods/drinks to avoid, weight, exercise, relaxation and general well-being. Any questions, do ask - someone will have an answer.

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Kellyjelly

Hi just wanted to say hello as I’m new here too, I’ve had this condition for a long time but just arrived here a few weeks ago. It must be hard to get your head around what’s happening and very scary. This forum is a real lifeline, I have been welcomed so warmly and have learned so much.

Hopefully your appointment will come through really quickly, are you in the uk? I know it’s really early days but If the appointment takes it a while it really does no harm to chase it up.

In the meantime take good care. 😊

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4optimistic

Yes, I am in the UK. Regarding the clinic appointment, I have just written a post (below) about scrapping up enough cash to go ditect to see a consultant. I am indebted to the NHS over the years for other medical issues but oh dear, the waiting times and cancellations etc are out of control.

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Grouchysmile

Hello, I'm new to both this site and AF. Until 3 weeks ago I'd never heard of it. I was given rivaroxaban 20mg too and I don't think I've had any side effects so far. Best of luck with your appointment.

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4optimistic

Thank you. And all the best to you too. I am feeling a lot better than two days ago when I was diagnosed in A&E. A week earlier I had been dicharged from thoracic clinic after being monitored for suspected lung cancer for three years. Was going to celebrate on Saturday with friend. Instead I was diagnosed with AF.

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4optimistic

BIG thank you and since my post I have in fact been to AF Association Website and found it extremely informative and rewarding. Without doubt this site is full of compassionate and inspirational people. Thanks you so much.

One question! As I was diagnosed in A&E is it worth going straight to an electrophysiologist for a further opinion/assessment? I don't mind selling the furniture if necessary! (As I live on my own I won't be depriving anybody of somewhere to sit).

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cassie46

Be aware that if pay to see an EP in the next few weeks or so he will want to see a ECG and a echocardiogram. The cost of the EP will be approx. £200-300 but the tests add quite a lot extra about £90 for ECG and I believe about £200-300 for a echo scan. If you go to the AF clinic you will get a ECG and may get booked for a echo scan, you can ask for copies which you can then take to an EP if you then wish to go privately, saving on those costs.

I went to see an EP privately but this was after 4 years of being diagnosed (was not happy with my cardiologist, long story) got my GP to refer me to an EP of my choice at Papworth. At the appointment he insisted on an ECG there and then, I had a recent echo scan with me that my GP had organised and done at my local hospital, but he was not happy with it so he wanted another one done at Papworth. I asked if I could go on his NHS list which he agreed to and the scan was done a few weeks later on the NHS.

Cassie

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Hugo40
Hugo40
in reply to cassie46

Might sound stupid, but I am very new to AF. I am reading about GP & EP what is an EP as opposed to a GP.

Hugo40

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cassie46
cassie46
in reply to Hugo40

A EP is a Electrophisiolgist, he is a specialist in the electrics of the heart, so specialising in Atrial Fibrilation. A Cardiologist is more on the plumbing side of the heart and of course GP, general practitioner. So if you can it is best to be referred to an EP.

Cassie

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Maureens46

Hi 4

Sell the furniture and go straight there. See an EP and have a list of questions to fill a suitcase based on the knowledge you have found.

Any help or advice you need will be answered by the lovely people on here who have all travelled the road you are now starting. Be assured we all feel your pain and are here to help.

Best wishes on your journey

Ps

Any idea where I could pick up a double wardrobe cheap?

Mo

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4optimistic

Thanks Maureen. Sorry cant help with the wardrobe - its one of those ugly ones built into the wall!!

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cassie46

Forgot to say in my earlier post I have been on Rivaroxaban for 5 years, not had any side effects to my knowledge, quite a few on this forum are on it.

Cassie

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4optimistic

Thanks Cassie for the information. Most useful.

Regarding Rivaroxaban. Woke up in the early hours of this morning with stomach ache after taking the drug for only three days, but that could be due to interaction with Reflux meds Pantoprazole and Gaviscon. It really becomes a minefield when taking different meds for different medical issues. Lots of good wishes.

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Auriculaire

You should know that long term use of PPIs can cause nutrient absorption problems particularly of magnesium and vit B12. The magnesium is important as lack of it can exacerbate heart problems.

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Buffafly

To add to other comments, the AF may be connected to your lung problems and/or GERD as they can both irritate your heart. I took Rivaroxaban without any problems except that it has to be taken with a full meal to be effective and as I sometimes have a bowel problem best treated by fasting I changed to Apixaban.

I wouldn't sell the chairs until you have seen a cardiologist because your plumbing has to be checked before the electrician can start work! The answers to KellyJelly's post about Cardiologist or EP? may be helpful to you.

Best wishes, time and knowledge and our friendly support will all help with the peace of mind 💜

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Buffafly
Buffafly
in reply to Buffafly

PS Do you by any chance have any Art Deco furniture......?

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4optimistic

Very interesting and kind. I am fascinated in the link between stomach and heart via certain nerves. I was aware of the strong link between stomach and brain but not the heart.

What do you mean by plumbing? is that the heart structure itself? Arent some Cardiologists also in the electrical business?

Thanks again. Unfortunately no Art Deco furniture - bit boring stuff really....!

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Buffafly

If you look up 'Vagus nerve' you will find a proper explanation of the effect it can have. Speaking only personally I am most likely to have an episode when I have an upset stomach or a respiratory infection/virus, partly I think just from the physical effect of bloating or congestion.

Cardiologists do have knowledge about the electrical system - my previous one was very interested and clued up - but for in-depth knowledge and ablation you need an EP. Cardiologists work on the physical structure of the heart - blood vessels, valves etc. The exception seems to be pacemaker insertion which can be done by cardiologists.

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4optimistic

Big thank you. Have began the research you have suggested and one thing has led to another and its all very fascinating as I suffer from serious acid reflux (GORD) and taking the maximum pantoprazole.

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Becksagogo

Hello and welcome to the forum. I was on Rivaroxiban for about a year when my AF was first diagnosed. As far as I was aware there were no side effects however you need to be mindful that you may bleed a little more if you cut yourself, or after blood tests. You may even need to stop taking it for a short while if you need dental work etc.

Your Pharmacist can put your mind at rest regarding the interactions of certain medicines if you are worried.

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4optimistic

Thank you for your reply. I am shortly going to have some blood tests. Can I ask if you (or anyone) have had blood tests accompanied by copious amounts of blood letting or is it just more than normal. I assume the phlabotomist will not freak out. Im going to need her to pick me up off the floor!

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Buffafly

Are you expecting to bleed because of the Rivaroxaban? If you enjoy a drama it will be very disappointing as there is no difference from normal 😌

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Becksagogo

I guess we are all different but I found on Rivaroxiban that I did bleed more than normal. Not to the extent where I was in danger of bleeding to death but I had a few episodes (usually after a blood test) when I found the bleeding took longer to stop. That was quite frightening for me and those around me including one episode when the lady in the bed next to me leapt out to help only to remember she was connected to a catheter. Ouch.

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Hidden
Hidden

Many of us have been where you are. Do not panic! What I found most helpful is the guidance of an electrophysiologist is Louisville, Kentucky named Dr. John Mandrola. I recommend you explore his advice. Here is a start - drjohnm.org/2014/02/13-thin... Best of luck!

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Andyc934

AF is usually (but not always) the result of something else up stream I.e high BP, being overweight , poor lifestyle, sleep apnea etc try and eliminate any causes if you can , dr John days site has a ten point plan to reduce AF check that out.

Good luck

Andy

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colliedog1

Same scenario as me... That's exactly how I started... Have been on Rivera Iban 20mg for 2 yrs.. No adverse effects... On Bisoprolol 7.5mg...pnly have the occasional episode of AF now about 4 months apart... Also have flecinaid to use when it starts.... Worked so far... Talk to these great people on here, they will help you.... They have helped me a lot... Its very frightening when it starts.. You do learn to cope tho... Just live a bit differently... Its no alcohol for me... And no caffeine... Good luck... Xxx

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4optimistic

Thank you. Thats both inspirational and encouraging. Just what I need to hear. Have yiu had much blood letting on having a blood test, may I ask?

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Morzine

Hello, oh poor you.....it’s scary to be told this afib word and we all go through not a shock of “our life is never goung to be the same again “, but trust me it does all get much more rosey as time goes on.....thankfully this forum has calmed most of us down after our awgul shock.....I’d have been lost without it......we are all n these blood anti coagulants and they are a life saver in as much as they knock down the risk of stroke.....I’ve nothad any probs with them.....those bit of paper in the packets are always scary I know, but they have to cover themselves.......next step will prob be more tablets I guess....don’t read the bits of paper in the packets!!!....I’m in France all mine are in French anyway!

Once you get to the af clinic,things will slot in place,

I feel for you...I was you last May......once I got the tablets sorted my life became normal, now had an ablation and it’s looking good....it’s a process you are now on.....a process that will make this scary time seem much more normal.......as bob said in nice you read about it you are armed for questions at the clinic.......askeveryone here....were a friendly bunch! itgood luck and chin up!

Sue

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Auriculaire
Auriculaire
in reply to Morzine

Hi Sue- I live in France too. So far ablation has not been mentioned by my cardiologist probably because I have only had a handful of attacks in 4 years. Where did you get your ablation done?

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Morzine
Morzine
in reply to Auriculaire

Hi, I live just outside morzine, I had mine done at Lyon three hours away apparently the chap there is highly thought of. Couldn’t fault my hospital stay, so caring. Weird herethe wards aren’t open wards like uk, it’s a corridor with single rooms or double rooms of, the ones with two beds you don’t pay for the single ones are 95 a night, but paid just 45 with the mutuel covering the rest.....so you have your own room and don’t realky see anyone unless it’s check up time.....it was very pleasant....

My cardio sajd I had the option the first time I saw him.....I’d just had my first attacks, about three in a matter of six weeks, then none.....he said the earlier you have it the better as you’re young...I’m 65 I’d not call that young!!!......I started the afib in May and once I had my tablets sorted ivehad no attacks although I apparently get small silent ones I’m not aware of......I think this cardio encouraged me to have it done......said it would be better to be off the tablets.....

Ask your guy, there doesn’t seem a waiting list, I could have been done in about 6 weeks but I wanted toget the hectic Xmas out of the way and be calm!....I’d recommend it, I’m seeing my cardio later this month nth and think I ditch the tablets then......funnily enough I think I will be nervous for a while after in case the ablation hasn’t worked......we will see eh......if it hasn’t I’d certainly have another one now I know it’s not that bad......I think in France they encourage getting off tablets......

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Auriculaire
Auriculaire
in reply to Morzine

I live in Corrèze but my cardiologist is in Haute Vienne. I have been in hospital 4 times now and compared to UK it's luxurious! I have not had many afib attacks and they have been spaced out so I think my cardiologist considers that I don't need an ablation. I can't say I fancy one. A Holter has shown nothing both times I've had one . Certainly my cardiologist isn't a pill pusher. He even said I didn't need an anticogulant despite my age (66). I'm not sure about this so I take nattokinase and other supplements that have anti platelet properties.

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Morzine
Morzine
in reply to Auriculaire

Funny how they vary so much, I was put on pills immediately in Spain where I took Ill with afib the first time,, they told u will be in these for life, but of a shocker, told me to go home straight away, and I saw this cardio........the main thing is though you feel content with it isn’t it.....

Sue

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4optimistic
4optimistic
in reply to Morzine

Thanks Morzine. Against that is what I need to hear, for encouragement. The people on this site are being a true inspiration for me

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Redbull45

Hi I have the same since Sept 2018 on bisoprolol and apixaban every tablet have side affects but not every one get them I am just getting my head around it but we are all here for you take care

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4optimistic

Big thank yiu for replying.

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Brizzy5000

Been on rivaroxaban now for 2 years, I have had an ablation and will be on this drug for the rest of my life, I have not had any side effects as far as I know.

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Hidden
Hidden

I love Rivaroxaban. Once a day, not much fuss to it. Some people do not get on with it or find another anticoagulant suits them better.

As others have said, you do need to take it during a meal and preferably one with some fatty content. Grapefruit is, I think, the only dietary restriction.

I have not found that blood flows when one has an injury - it may take slightly longer to stop but the erroneous use of the term blood thinner gives the false impression that anticoagulation means blood will gush freely. Not the case at all in my experience.

It would seem that some dentists and surgeons have not quite got the measure of the new anticoagulants. We see a variety of instructions for stopping anticoagulation prior to some procedure. Be aware that with AF you should ask for an adrenalin free local anaesthetic for dental work.

I found anticoagulation a very big step to take to start with. I suddenly felt very much older than I really was. Five years on I am much more relaxed and buoyant.

I'd echo the comment Morzine has made that thankfully this forum has calmed most of us down.

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4optimistic
4optimistic
in reply to Hidden

So true. Its only been nearly four days since my diagnosis and I reckon without this site I would be a nervous wreck and possibly even worse!

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Hidden
Hidden
in reply to 4optimistic

In time many of us get the measure of the AF that we experience and gain the upper hand as a result. It's quite an incentive to live in a healthy way!

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Brianboru

I do not suffer luckily from any side effects though I seem to with other medications. We are all different in our succeptability to side effects. Do not mentally expect to have them. Just observe and and hopefully avoid the “ placebo” effect.

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Auriculaire

It has it's own name for side effects -the nocebo effect!

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Ianc2

go and see you local MP and explain you are not happy about the start of the NHS and your case in particular. It may not work but at least you will have the satisfaction of doing something about it. Find out if the hospital has PALS and go and have a chat with them. Write to your local newspaper, stand outside the MP's office with a placard. Go and see your local councillor and tell him/her your troubles with waiting lists. Try the local radio station. Probably won't work but you might get lucky.

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4optimistic
4optimistic
in reply to Ianc2

Thanks for the reply Ian. I dont know why I would want to do all those suggestions as I have got great respect for the NHS from being a laryngectomee and having several other serious health issues.

Sorry if I gave the wrong impression. Bear in mind I had just been diagnosed and in a state of shock. I was just not looking forward to the queues, the long frustrating waits for the telephones to be answered etc. Plus I am 76 which doesnt help. If I could afford a private consultation, I would go for it. It would save the NHS some money and give someone a chance of moving up the list. But alas I don't have pots of cash.

Lots of good wishes. ( Thank you also for your suggestion of contacting PALS who were extremely nice and are ringing me back hopefully with some success!)

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Maura5

Rivaroxaban is the only anticoagulant I’ve taken which hasn’t given me any side effects..... I’ve tried a few!

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Tapanac

I have been on Rivaroxaban for about 15 months and all is fine. I have even had an ablation/dentist, etc and didn't have to stop it for that procedure. I found that taking it was so easy as just with my evening meal. No exceptional bleeding except that as I have one wonky kidney my EP has now decided to change me to Apixaban. I'm not sure if I want to change as don't know if I am happy with this as it is twice a day and from what I read it does have nuisances in that certain things to avoid eating. However please don't worry about Rivaroxaban. You will be fine. Best wishes

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Staffsgirl

I went through the same shock just over a year ago, diagnosed with AF while undergoing surgery for fracture of femur. Came as an enormous blow to learn I needed to be on medication for the rest of my life. I take Bisoprolol too. I am a very young 70😉. All my life I have avoided medications whenever possible. Yes...the potential side effects have to be listed, but it’s probably better not to dwell on them, and to take it with a pinch of salt.

Although I hate taking meds, I couldn’t bring myself to ignore the doctor’s advice. Talk it all through with a GP who knows you if possible....I found mine very helpful and understanding, in constrast to the cardiologist-with-no-bedside-manner that I encountered when it all first kicked off. He was more than useless.

Good luck...the shock will pass, and you’ll learn from this forum, and eventually you won’t think too much about it.

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4optimistic

Thank you.

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Marcus30

Have yous seen a specialist and had an Ultrasound of your heart?

- My EP specialist said if there is no structural heart concerns on US, then no need for blood thinners, totally against them.

- How many episodes of AF have you had so far?

- I having an occasional, up to 12 hour AF episode, no ore than once a month, I would do nothing and take nothing. (if your EP says that post normal US)

Cheers,

Marcus

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Lock5000

Hi hello paul here hope all is well your end . I had af some 3 years ago and am on rivaroxaban (excuse the spelling if wrong) and i ha e had no side effects at all i just take my 20 mg every evening about 6 and thats it and i would prefer that than watfrin where you have to ha e blood tests all the time . I also have a hiatus hernia that i am sure kick starts my af but the doctor never seems to see the link ie vegus nerve etc. Also i was put on bisoprolol from proprananolol as a pill in the pocket but all i find with bisoprolol is that if you go into af all it does is slow your heart rate yes but also just slows your irregular heart beat as when i took propnanalol 20/30mg it stopped my af after a coulpe of hours and a doctor once said that bisoprolol slows the heart rate. As does propranolol but propranlol has more of a anti adrenline substance sorry if that does not make sense But can explain more.... good luck

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4optimistic

Thank you for all that information. Again, much appreciated. Lots of good wishes.

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netie54

I 100 per cent agree with Bob. Sound advice. It must be 20 years now since my husband was first diagnosed with it. Very scary at first but you live with it. My husband has been on Riveroxiban for years and has no side affects at all. Get yourself a good EP even if you have to start privately.

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Leonardo3

Hi I have been on rivaroxaban since end of November, not really had any issues it’s all the other meds that’s the problem, but this is apparently the best for AF

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Petmad5

Hiya. Welcome.

Everyone here is wonderfully helpful.

Rivaoxyban is an amazing drug. New gen blood thinner with no horrid implications like warfarin.

Only once a year blood test, no draconian restrictions like with warfarin!!

I’m new here too.

Read up on AF.

Good luck xx

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silviageci

I am on rivaroxaban (Xarelto), no problems

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4optimistic

Thank you. (Run out of things to say, except a bug thank you to everyone).

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4optimistic

Sorry should read BIG thank you. Typing error.

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Red1183

You need to express the fact that your medication is having undesirable side effects that affect your way of life, and push for an ablation. I too have had paroxysmal AF. I expressed to my electrophysiologist that I need this taken care of before it becomes persistent AF. After all, it's your health, not your doctor's. At this point, having Paroxysmal AF (AF that comes and goes) is early in the ablation game and prime time to get it done. The success rates are higher (read below). I had an ablation about 4 months ago and I'm glad I did. I may need to have a touch up procedure but trust me, its no big deal. The success rate (which is measured as no symptoms of AF for at least 36 months) for someone with Paroxysmal AF is better than someone with persistent AF or permanent AF (about 70-90%). Patients with persistent or permanent AF have a success rate of about 50-60%. Of those patients with Paroxysmal AF who needed an additional procedure to touch things up, there was a 95% success rate in which they became predominantly symptom free. The worst part for me was the 20 minutes that they aggressively pushed on each side of my groin to make sure I didn't bleed where they inserted the catheters. I'd like to add that my case was not a straightforward AF ablation either. Do the ablation, and change your lifestyle. Exercise and eat a predominantly vegetarian diet that includes fatty fish, mono and polyunsaturated fats like those found in fish, olive oil, and avocados; stay hydrated; if you smoke, QUIT. If you drink, QUIT (or at least while you'll be on rate-lowering meds post ablation, and then in only very small amounts, every once in a while, if you absolutely have to have a drink). If you consume caffeine, QUIT. I bet you'd be surprised if you eliminated all stimulants that are known triggers for AF episodes. By the way, I'm not only an AF patient, I'm a nurse studying to assist in cardiovascular surgeries. Make sure whoever you chose to do the procedure has a lot of ablations under their belt. Get determined to get your life back. Just remember that generally the first 3 months post ablation, you may have some AF episodes which is normal while the heart is inflamed. This doesn't necessarily mean that the ablation didn't work so DONT GET DISCOURAGED.

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Ianc2
Ianc2
in reply to Red1183

Well said. Nice to hear a professional summing up what a lot of us think. Thanks for the write up.

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gixxerboy

l was on Rivaroxaban for a year.....l will never take it again !!!!!!! it made me bleed from my back passage, went onto apixaban and never had a problem since :) if you google Rivaroxaban they are apparently sueing the company for bowel side effects from it

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roger1952

I have been on 20mg rivoraxaban daily for about two years, and can honestly state that I have NEVER had any side effects whatsoever.

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