Anticoagulants?: We are doing some research... - AF Association

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Anticoagulants?

RachelAdmin
RachelAdminAdministrator

We are doing some research for our resources, I hope you can help by answering the following questions:

Did you have any initial concerns when first prescribed anticoagulants? Was your GP or specialist able to reassure you? Or did you turn to AF Association or another charity?

Thanks for your co-operation.

Rachel - AF Association Patient Services

124 Replies
oldestnewest

No concerns at all,had fought for 2 years to get on them with my GP They said they didn't antucoagulate their patients at score 1 for female. I was actually 2 ...hypertension. Had a TIA and was put on immediately.

This forum has given me more support than anywhere else

Never been to anticoagulant clinic

I was offered Amioderone.I knew it was not apropriate since I had an unresolved thyroid problem so refuded the Amioderone.

Then after a TIA ....a year or two later...I was offered Warfaring but did not want to take it as i was unsure how helpful or harmful it would be.Not much in depth explaination .I was eventually in the hospital given the warfarin and took it grudgingly not really underdstanding why i should take it.....eventually found out after an Echo. the TIA was due to an embolism and connected to a hole in the heart.

BobD
BobDVolunteer

Anticoagulation was only started in order to have ablation but this was long ago before CHADSVASC etc. No issues with starting. I remember it being around 2007 before it became part of normal AF treatment. How lucky are we all today!

When I started the apixaban i didn't get any information about side effects etc from my miserable gp only after reading posts here and taking notice of other people did i feel reassured but I detest taking them and i don't really think they are as marvellous as people think

A new cardiologist recommended that I start Apixaban, which was quite appropriate to my chadsvasc score. The GP was not that supportive. In fact my own AF research via this website helped me persuade him with facts.

I needn't have been concerned about the drug side affects and the bleed risk is mainly in the background.

I had terrible anxiety about taking anticoagulation.

My GP had little patience with my fears.

Luckily I had nearly 2yrs from diagnosis before I had to start it & with the help of the AF forum I managed to get some confidence.

Can't see me ever being 'happy' about taking it though

Hi Rachel :-) I had great concerns about taking Anticoagulants,

The GP I saw (after being diagnosed with P-AF by letter ) explained nothing about them to me. She asked me if I had a computer, wrote 2 words on a piece of paper CHADS and HASBLED and told me to go and look them up then to go back if I and decide I wanted to be prescribed ABs

What I read about them sounded scary to me then I chanced upon this site and things became much clearer.

Docs explained reasons for so not seeing reasons to believe Dr Google scare stories I said yes.

No problems since including dental and eye surgery- a 6 hour major operation and now on chemotherapy

Anticoagulation is my friend 😊

When I was prescribed Apixaban by a cardiologist at diagnosis, I assumed it was just ‘until I got better’ - a few weeks or so at the most. 😩😂 ☹️ The hospital pharmacist told me only to avoid NSAID’s and St John’s Wort.

Reassurance, information, side effects and everything else I have learned from this forum and the AFA website.

Three big cheers for all of you with my thanks.

I was scared when first prescribed Apixaban and for me it was the pharmacist that helped. They asked me when dispensing, if this was my first time taking. I said yes and he took my phone number and called me after 48 hours, then again in a week, then again after 2 weeks. Very reassuring that someone was looking out for me.

I was prescribed Warfarin to prepare me for a cardioversion, no explanation. On Christmas Eve I had an anxious call from my GP to say my latest test had shown my inr far too high! Luckily I reverted to NSR so I was able to stop. Years later when AF returned I was put back on Warfarin, hated it because I couldn't stay in range, got needle phobia but had frequent checks. After a battery of tests was taken off Warfarin and told to take baby aspirin every day which I didn't do because it wrecked my stomach. Was told off by GP. Had a big operation and bled buckets because the aspirin hadn't worn off enough 😱 Eventually had bad episode of arrhythmia and suspected heart attack (after age 65!) and prescribed Rivaroxaban - absolutely delighted! Now taking Apixaban because suits my IBS better.

hi Rachel

I take warfarin and have done so for some time now. I tolerate I well. It is well tried and tested and can be reversed quickly . It is easily obtained and as far as I can see , a veey effective insurance policy. I have followed other posts on this site and wish to thank all those who took the trouble to put them there.

TBH I was terrified. I know this sounds overly dramatic, but I had had a blood clot in my arm during an episode, sent home by A&E, saying it was an RSI. Requested to see a vascular surgeon privately, who 3 weeks later said i should go on Warfarin immediately. So by this time I was just convinced i was going to die soon!!.

My GP did his best to reassure me, but being told, after what I had been thru', "if you start bleeding from any orifices, contact A&E immediately", did not really help. However, he also set up the district nurse to come for 3 days to give me a Clexaine ??? injection to ensure blood clot had gone. That was nearly 7 years ago!!

As INR results came and went I found AFA, a source of great support and reassurance. The practice nurses who do the blood tests really know very little about diet and warfarin etc, and rely heavily on what the computer says about dose....when really there is more to it than just an isolated test on a certain day, if you see what I mean.

With the help of AFA I have become an expert in my condition......thank you!

Contact me, if you want more details!!

In 2011 I was put on low dose aspirin. 2013 my cons said guidelines had changed and suggested see my GP for a warfarin script. My GP now retired (being of the doctor knows best variety but an excellent GP nonetheless) in the presence of a GP trainee told me the salutory tale of an MP "too long ago for you to remember" as an aside to trainee. Apparently he was on warfarin and dropped dead on the steps of 10 Downing St of a cerebral bleed.

This did not put me off in the slightest as I had been hoping for "proper" anticoagulation for some time in view of current thinking.

I have now swapped to apixaban

I would prefer not to be taking Apixaban, but if it can help to protect me from a stroke that's got to be a plus. My Pharmacy was very good at ringing me when I first started it, also GP has done a six months review before reissuing. I consider that I have had excellent care since being diagnosed with A Fib. A bit unhappy that I have gained weight on the Bisaprolol.

Initially I refused anticoagulants, much to my EP's dismay. He then talked me into taking 325 mg aspirin daily instead. I had a major bleed with dental surgery. After reading lots of information on the web, including all the research done on the NOACs, I was convinced that anticoagulation with a NOAC was the way to go. I was reassured by the information on the AFA website, but the information that convinced me to the greatest extent, was reading the studies done on effects, both pros and cons, of taking anticoagulants. I was not persuaded or reassured by GPs, or EPs. My own research and decision about which anticoagulant to take.

Hi, I was diagnosed with A Fib last Whitsun bank holiday(2019) I was given 7mg Bisoprolol & 20mg Rivoroxiban. Felt terrible on the Bank Holiday Monday, BP VERY low, referring to the Rivoroxiban leaflet, stopped taking it and phoned 111. Vist back to hospital. Why I was put on Rivoroxiban with a CHADS VASC of 0-1 🤷🏻‍♀️🤷🏻‍♀️ Saw my consultant cardiologist and he was astounded by the doses. Now on 1.25-2.5mg bisoprolol & 50mg x2 Flecainaide NO anticoagulant.

There was no way I was going on warfarin anyway, not heard good things and I’m only 62.

My worry on anticoagulants, I have cats and adult children do too and can get scratched!

R1100S1
R1100S1
in reply to LaceyLady

Retired from my part time job as a Groundsman a couple of years ago, hardly noticed any bleeding difference pre anticoagulant to being on Rivorvaxiban

Hey Rachel; Was told for 4 yrs to be on them and I just would not. My reasons were that I am quite clumsy and have accidents around the house and kitchen weekly. I believed that if I was to fall while skating or off a ladder and bump my head, I could have internal bleeding and not know it. About 6-10 months ago, at my new EP's visit, he asked why are you still not taking any anticoagulants? I told him the same answer as above. His reply was "oh.. ok, I have a patient next door that is 26 years old that can not talk due to a stroke she had. Want to meet her"? His statement gave me a new perspective. Ive been on them ever since. No, Im not happy about it, but also I didnt want to put my husband in a care-taking situation because I had a possible "preventable stroke."

Yes I had very big concerns when first suggested & no neither GP or Cardiologist were able to reassure me.

AFA campaign, video & education & Patient Day of WHY anticoagulants were advisable & experiences of people on this forum did reassure me.

Hi Rachel,

I was put on anticoagulants by the Consultant who worked on me immediately following my AF diagnosis in January 2010. My stuff is Warfarin. He explained all about it to me, dealt with whatever questions I had. My surgery at the time were also very helpful and supportive too.

Warfarin and I are best mates, I don't give it trouble and it doesn't give me trouble and I have no concerns or issues at all.

Nowadays not only do I self test with my Coaguchek XS device but on rare, very rare occasions I adjust my own INR levels either by varying my intake of green veggies or using an algorithm used for adjusting my Warfarin dosage.

No problems.

John

I had no concerns taking Warfarin and like others bought my own machine and self test occasionally adjusting the dose.

It's been really useful when away from home or when I need to come off it for surgery then go back on it again I can judge as good as any doctor how to figure out what to do if too high or low it saves so much time as well

I was diagnosed with AF and advised to take anticoagulant. The GP explained about warfarin and NOAC and gave me a leaflet to help decide. I chose Apixaban to avoid all the blood tests with warfarin. I found this AF forum a little later and it is very helpful. The GP did a 3 and 6 month check now I am on annual check with blood test and time with nurse practitioner or GP.

Big concerns about what long term effects they could have. Apixaban seemed best of a bad lot. GP and cardiologist tried to reassure me but their statements did not match the scary research I later found out about rebound hypercoagulability. Now I feel like I'm stuck on Apixaban for ever, or risk a stroke by going off it. It's made me gain 5-6 kg of weight; vein in my foot broke for no good reason (except anti-coagulation) and it's been swelling for months; headaches; nosebleeds; feeling trapped on the drug. I want out but don't know how to do it safely.

I've been taking coagulants for several years. Eliquis most of the time, Savaysa for about 2 years, then back to Eliquis. When my doctor prescribed it, he didn't mention any risks, and I assumed there were none(?). So I didn't ask for reassurance, didn't need any, and never got any.

I had a stroke on aspirin regime. When apixaban was offered post a stroke which resulted in occipital damage and peripheral vision loss, I was relieved. I jumped on it.

Hello Rachel, I have been taking xarelto since June 2018 due to P.E's, 12 months later along came AF so have stayed on the same medication. I was prescribed xarelto by my haematologist and the cardiologist seems happy about that

I was very hesitant to take some drug I would be stuck taking for the rest of my

Life. My cardiologist told me

A story about being in the hospital with a patient who also refused them and he had a stroke and his wife was so upset who had tried to get him to take them

All along..... so I took the bottle

Of Pradaxa ..... seemed

Clear Noacs were better than Wayfarin. I still didn’t want to take them and ....... then was with my spiritual teacher and telling him I didn’t want to take them and he told me

To take

Them

And blew on them 3 times and I have

Been taking them ever

Since!!!!!

So that my story

LaceyLady
LaceyLady
in reply to Spiritji

I put my pills on a strong magnetic coaster!

No I was never told anything about them , I was just given them , apixiban , twice a day ..no explanation, sill on them with no side effects.

The A&E consultant suggested Apixaban but also mentioned Warfarin as an alternative. I was happy to take the former and didn't want all the testing etc. that came with Warfarin. I was quite content. I *really* didn't want a stroke!

I was put on anticoagulants due to having a TIA, I was started on warfarin then I stayed on it for three years until late last year it was then changed on hospital recommendations after having an op on my lung. I find the people on here so helpful and reassuring as my AF is up and down a lot atm and just reading what all you fellow friends with AF say is a big help.

I, like others who have posted, was petrified of taking Warfarin in 2014. I appreciate why I am taking it but have never stopped being anxious and every time I have a test the anxiety level rises. When I have a high reading I try eating more green veg to bring it down

Concerns: I was prescribed anticoagulants after a stroke, so no option. I am concerned hen I have to come off them for a biopsy.

Reassurance: none given.

Other source: the NHS used to have a drugs guide - no longer - that said Rivaroxaban should not be used by people with lung issues. As I had recovered from pulmonary toxicity, I knew to avoid it.

An EP had advised that I didn't need an anticoagulant, but a stroke 18 months later was proof that I did.

No worries at all, as soon as I was diagnosed with afib in July of 2019, started me on Eliquis right away, been on it ever since.

I was concerned about bleeding on the brain. I found some of the comments on health unlocked website a little reassuring

Started on warfarin 2013 whilst in hospital and first diagnosis of AF. Not told very much, given yellow book, warnings to carry alert card and I was quite alarmed starting out on this road. INR variable (1-6.5) which meant I was at INR clinic sometimes 3 times per week, mentioned this to hosp cardiologist in May 2017 and he said to ask my gp for a noac. I had previously asked my gp but no luck there! Later that year I again said to cardiologist that gp keeps refusing me noac so he wrote telling them to put me on one which they did (gp's choice -pradaxa). In Nov 2017 readmitted to hosp with AF and finally got changed to Apixiban which I have remained on since. The hosp asked why hadn't I been put on apixaban before - my only answer was 'cost?' Aparantly Apixiban is the best (or gold standard - quote)

I was concerned when initially prescribed warfarin as I didn't know anything about it and it did indeed prove to be a difficult drug for me, yet no-one explained much to me or as to why it seemed so unsuitable for me for so long. Apixaban is so much simpler, less side effects, no testing (that in itself saves 3 trips a week to the doctors surgery) and no dose adjustments or having to keep several strength tablets.

I got most of my info from BHF, their leaflets and articles and by my own on-line research, then taking a bundle of questions to the INR clinics and a great INR nurse. I seemed to be for ever querying whether things were related to warfarin but now I'm on Apixaban everything is so much more straitforward and settled.

Deezy24
Deezy24
in reply to Cat04

Hi I hope you don’t mind me contacting you. I have just been prescribed Apixaban as it seems I’ve gone into permanent AF and have to have a cardioversion. Your post seems to reassure me as some of the others seem as tho there are side effects and now I’m worried about starting them. Have you had any side effects? Thanks

Cat04
Cat04
in reply to Deezy24

Hi there, following all my problems with warfarin I find Apixiban really so much better. I don't bruise as much and when I cut myself I bleed much less than when on warfarin. No dietary restrictions either and my hair falls out less. Wow what a mess this AF makes us! I take Apixaban 12 hourly and have no side effects at all. Good luck and hope it suits you too.

No worries at all. Was offered them at 63. GP said why wait you’ll have them in a couple of years anyway. I was more than happy and anything to help was fine by me. GP was happy to prescribe a NOAC as well. Didn’t need reassurance as I was already wondering about possible stroke risk.

I was put on Rivoraxaban 20mg by my EP while on a waiting list for an ablation.My GP wasn't happy and actually wrote to my EP asking why I needed to be put on it immediately ,his reply was that if a cancellation for an ablation came up then I was anticoagulated and ready to go for it. I have been on this drug since July 2017 and was initially very scared to take it because of the risk of bleeding after a fall or an injury,but like others have said the thought of having a stroke scares me a lot more.

I have had 3 ablations now, and since my recovery from my last one in March 2019 I have been AF free.The last time I saw my EP 6 months ago he said at my next visit which is in April, he will probably take me off them ,but now I feel scared to stop taking them .I do have minimal side effects from this drug which is mainly not being able to get warm and cold hands and feet and the only other thing is having to take it with a meal as I work shifts and this sometimes is difficult .This forum has been a godsend to me and I thank everyone for all the valuable information I have gleaned from it .

No concerns at all when I was first prescribed anticoagulants. Both my parents died of stroke so I was very happy to try and prevent that dreadful situation.

I was a little concerned as when I picked my initial Rivaroxaban prescription up from the pharmacy I was asked if I would call them within the first 30 days to let them know if I was experiencing nose bleeds as they were doing their own research. I seem to remember the doctor being very matter of fact about the absolute benefits so that didn't worry me unduly.

I was originally prescribed daily aspirin which upset my stomach very badly. Warfarin was Ok until a no-added-sugar diet sent my INR plummeting. After my ablation I was given Pradaxa/dabigatran along with an antacid. My stomach wasn't happy but I posted on this site and CDreamer advised that Pradaxa needed an acid stomach. Antacid was duly dumped and no further trouble.

I consider that Pradaxa helps me to avoid a stroke &, as Bob says, A STROKE CANNOT BE UNDONE.

When AF was discovered, during surgery after an accident two years ago, I was put on Xarelto. Whilst I was an inpatient, the hospital pharmacist came to talk me through meds, and answer any questions. Cardiologist was unhelpful, aloof, and unwilling to listen to my concerns. After discharge from hospital I was called for an appointment (at hospital ) with the anticoagulation nurse to talk through implications. This was useful.

I was soon keen to reassess my situation, and my GP was understanding, knowing my reluctance to use any medication. At that time I was also taking Bisoprolol. Looking at my CHADS score, and talking it through with the GP, it was clear that the sensible decision was to stay on the anticoagulant. I have close experience of the effects of stroke. ( Bisoprolol was first reduced and finally stopped, thank goodness.)

I remain on anticoagulant, so far without obvious side effects. This forum has been helpful, offering me education and reassurance.

I had a stroke in late December 2019 which luckily for me was thrombolised and I've had no after effects. I was diagnosed with AF and put on Lixiana at the hospital and was told what to look out for. Apart from bruising easily if I bump myself I've had no other side effects. I'm assuming I'll be on them for the rest of my natural. Just add what a brilliant site this is for support.

Well I have read the replies. I seem to have been on anti coagulants longer than anyone!

In 2000 I had mitral valve repair.

Soon after I was put on Warfarine.

My readings were always up an down for years. This did not bother me, I was grateful for being monitored.

3 years ago my turn cardiologist changed me to Rivaraxaban / Xarelto. I have had increasing debilitating joint pain since. My gps in all these years have had very little input . I only have a yearly hospital check up , inspite of having persistent AF.

No one will say whether the Xarelto causes the joint pain , it is too young a drug to have sufficient result data ( apparently).

I miss the sense of contact and back up of being on Warfarine , it was reassuring to be monitored.

I am on anti coagulants for life so I just get on with it. I would give anything to have an answer to my joint pain though. I should have had 2 MRIs last week on spine, pelvis and feet. These did not happen . I fought my terror of those machines

but, when I got there

they did not have notes about my heart surgery of 20 years ago!

I wept!!!!! On has to be very proactive these days!

I had and have huge concerns; the GP was not very informative and I have had to seek information here, with other doctors/EPs and with the BHF. After two days of Dabigatran I had a subconjunctival haemorrhage which an EP suggested might be due to having rubbed my eye whilst asleep... highly implausible imo. My concern about anticoagulants involves the risk of a brain bleed (including minor bleeds which go unnoticed and result in cognitive decline) as well as major ones which are the result of knocking ones head accidentally. Also, rthere seems to be a difference of opinion concerning when they are to be taken- my GP advised against whilst others were strongly in favour. Also

Some doctors advise not taking until a CHADSVASC score of 2 is reached. And what of aspirins? European doctors say there is no evidence that they work, whilst American doctors say otherwise. Why the difference of opinion? One side must be wrong.

I found out that I had AF in a copy letter to my GP which included a request for me to commence anticoagulants. After making a swift appointment with my GP (as I was concerned at the letter’s content) I was given reassurance and subsequently referred to my local anticoagulation clinic who were marvellous, reassuring and explained everything in full detail.

Having taken aspirin for about 8 years, after being diagnosed with AF, it was almost a relief to be offered Apixaban by the time I was diagnosed as in permanent AF. Yes, the thought of bleeding out if no assistance was available has crossed my mind on many occasions, when even the smallest cut seems to bleed for a considerable time, but for me it outweighs the other choice!

After a few minor palpitations I was given Warfarin. I was out of control more than 50% of the time and attending the clinic weekly.

Eventually I was changed to Dabigatran and have never looked back. At 76 and with a Chadvasc score of 4 I am just so happy to take it.

Specialist gave me full information, explained why I had to take them and the need for them. He also answered any questions I had. That was 2001. I have PAF

Hidden
Hidden

I was frightened of NOT being anticoagulated on diagnosis as a 64 year old female within 6 months of my 65th birthday. I knew little about AF at the time and got scant information from the hospital or GP, the latter refusing anticoagulants based on my age & CHADs score.

Initially I turned to BHF for advice and found signposting to AF Association information there - both were invaluable and led to my decision to see a Cardiologist privately who was disgusted at the GP’s decision saying, “what do they (GP) think anticoagulants are? A Birthday Present?” He sent a letter to my GP who then prescribed Apixaban.

Hope this is helpful - please let me know if I can assist further.

Pat

I was a bit concerned as I had a history of bleeding, but understood that the risk of a clot was much higher.

I did my own research, first reading the leaflet in the box, then checking my bleeding risk score.

Because of the increased risk for me, I have been extremely careful not to have more than 2 units of alcohol on any one occasion and keep to an absolute maximum of 6 units per week.

It does concern me that so many people avoid reading the information leaflets, in case they then start to imagine side effects. They could be missing vital information, putting them at risk of serious repercussions.

Hi ... yes I was very anxious , my reasons being my elderly fathers experiences

dad at 88 and an afib sufferer too had a near fatal gastric bleed on riveroxyban and the later move to warfarin left him with occasional subcutaneous bleeds. He died last year but it was not his heart or a stroke so in retrospect the anticoagulant did their job in full

So when apixoban was suggested to me I was nervous I would be a mottled and bloody mess.

The reality is that I have no side effects other than the big positive of really solid reassurance that in any afib episode the risk of stroke has been addressed as best as possible

It was my cardiologist who persuaded me but my ( fabulous) pharmacist who convinced me when he said as he laughed at my concern “ you won’t bleed to death when you cut yourself shaving ! “ adding “taking these is a brilliant insurance policy “

He was right

Hi Rachel I take Apixaban. When I was diagnosed with p-af they said I had to take an anticoagulant, my GP gave me full information on Apixaban, Riveroxaban and Warfarin. He asked me go home read all the info then to go onto the internet and look at this site and forum. I chose Apixaban, I absolutely hate taking it. I get headaches and bleeds behind the eyes which my optician checks regularly. My EP absolutely does not want me to stop taking them. But for me at the moment the jury is out!

Consultant in hospital intially prescribed. Gp followed with repeat prescription. Of course knowing better than them I eventually stopped taking them. As I felt fine and no conscious symptoms. All credit to GP after a few months received a call to ring surgery. Don't you just hate those call requests- what is it, what's wrong with me now. Long story to short, after a letter from consultant saying it is my choice. But to avoid possible (however likely or unlikely) risk of stroke his advice I should take them. So I am. Have to say appart from occasional headaches ( I'm not normally a headache person) no side effects I'm aware of.

My cardiologist first suggested Warfarin, but my veins are difficult to get into, this was long before the surgery had the bloods done by finger prick. I was put on other anticoagulants the reasons why were explained and I have had no problems with them.

I was put on warfarin after I started getting Afib nearly 4 years ago.

I have been back in sinus rhythm for about 3 years since taking flecainide but gp still wants me to continue warfarin. I have had the odd period of Afib recently and flecainide has been increased, ok since then....I know when I am in Afib, I use a HealForce PC80-B which clearly shows lack of P wave, so there's little danger of me having any extended period of unknown Afib.

My INR is fairly stable but I do have some concerns about long term effects of taking any drug, not quite sure why I have to continue warfarin as I am pretty much in SR permanently.

Did I have initial concerns? Absolutely, didn't ever want to be taking meds every day and I was anti taking any medication,let alone a lifelong anticoagulant.

Was I reassured by GP or specialist? Cardiologist told my GP to start me on an anticoagulant even before seeing me. Well GP didn't know what brand to prescribe, was purely because I was given a leaflet at an A&E visit for Elquis that I ended up on Apixaban. After the GP visit I didn't start taking them. When I saw the cardiologist who was recommending a cardioversion I was convinced I had to be on anticoagulant.

Advice? Well this site of course has been more helpful than one could imagine. It reinforced the need for the anticoagulant prior to the cardioversion.

I resisted all heart medication for quite a few years. The first thing I went on was a beta blocker - Bisoprolol. Various medics kept pushing me to take other things including ‘blood thinners’. Because I have always bled quite easily, I was worried about taking them. I was also having regular acupuncture at the time and the acupuncturist said that I always bled more than her other patients when she took the needles out so she thought it was not a good idea to take them. I also had an angiogram around this time and it took the nurse about 15 minutes to stem the flow of blood from the artery in my leg which was a bit scary at the time. However, in January 2019, I ended up in hospital in Madeira with a chest infection which also affected my heart and I found myself on a number of various intravenous drips and eventually discovered that one was Riveroxaban. I was not given any information about it other than to read the accompanying leaflet when I got actual tablets. So I have been on it ever since. I only found this site some time after I had returned home and then I learnt, along with a lot of other useful information, that they are not ‘blood thinners’ but anticoagulant, mainly thanks to Bob repeatedly trying to rectify this popular misconception even amongst some medics. A far as I can tell, I have not had any side effects although it is difficult to know what causes what side effect when you are taking several things.

Hi Rachel,

I was a bit disappointed when I was told I had to go on Warfarin, but that was because of my condition rather than the medication. The weekly checks were a pain, and got in the way of my regular life a bit. The restrictions in what I was allowed to eat and drink were a nuisance. I was just able to get consistently in range before Ablation.

After Ablation I was told that as I was a reliable patient, I was OK to go onto Rivaroxaban. No issues with that at all.

I had no concerns. I was relieved having been on just aspirin but all medical practitioners were giving me conflicting information about what I could eat and drink etc. This was before DOAC's so I turned to the internet and found this forum. When I was put on a NOAC because of this forum I knew more than most of the medics. Worryingly this is still the case with some very nasty blunders and unneeded tests being avoided due to the knowledge I have gained here.

Hello Rachel, I was prescribed Warfarin immediately after diagnosis of lone persistent AF. Although it was a difficult time, I did have some previous knowledge about anticoagulation and was not overly worried about it and was well supported by my INR nurse. Due to my involvement with the AF Association and my local AF Support Group, I became aware of the alternatives (then NOAC’S) and was able to change to Apixaban around 4 years ago and apart from getting blood shot eyes (twice) I have experienced no problems.

Yes, I had concerns, having previously used mainly homeopathic remedies. A nurse in the GP practice talked it through with me and the GP also explained the reasons for anticoagulation and I was convinced of the need and remain reassured it's necessary.

I was prescribed warfarin in hospital after a prolonged af episode. I understood it was to prevent stroke, so I readily accepted I needed to take it. Never been a problem for me.

My pharmacist explained all about Warfarin before he gave it to me and the anticoagulant clinic also went through the possible side effects. I was very careful about keeping to the rules re eating the same sort of foods and taking the tablets regularly. Moving to apixaban was a piece of cake!

Hi Rachel, was prescribed Apixaban and Bisoprolol in A&E after first episode of very symptomatic P A.fibb ( lasting 8hrs and spontaneous reversion to nsr) by cardiologist who saw me for brief examination the following morning and ECG review. He apologised for having no time to answer any questions but remarked that I appeared very anxious, was feeling quite shocked, department very busy, no one to answer any questions or offer reassurance, had been left on my own all night. He said that I might need an ablation and explained what that was which only worried me even more. Was discharged to care of GP had to wait 3 weeks for appointment who was quite abrupt and not very reassuring. Told was on medication for life. Saw local chemist who took the time to talk to me and was very helpful but was still a lot to take on. Have found that this site to be a very important fund of advice and reassurance that has kept me sane and feeling that I can take this in my stride.

Don't really like having to take the anticoagulant at all but like the idea of a stroke even less. Worried about the risk of a brain bleed (father died after subarachnoid haemorrhage at age of 56) but feel that I have no alternative. I don't know how I would cope without the very helpful tips and posts on this site.

Hi Rachel - I have had AF for about 12 years now. Firstly I was put on Warfarin, but could never stay in my INR Range, so I was never really protected from the risk of a stroke. I wanted to move onto dabigatran (Pradaxa), but before I could (cost reasons I suppose) I had to monitor my INR readings, and once I was able to show them the ineffectiveness of Warfarin for me anyway, they relented and I have been on Dabigatran ever since. Just need to remember to take the two doses required on time each day, but I have no issues whatsoever about taking anticoagulation - after all, it is lowering my risk to a stroke!

Initially yes because I had, two months previously to my having AF, a pituitary tumour apoplexy, but so far so good. I am on Apixaban, but I also have recently been given a diagnosis of a condition called Lupus Anticoagulant which causes clotting problems, plus a leaky Mitral Valve. My consultant is considering Warfarin, only because she says it has a longer trial span. I will let you know the outcome.

Initially I was worried and upset about going on warfarin but was reassured by the anticoagulant team at the hospital. Am now on dabigatran which I find much better for me. I have always found the bhf booklets very helpful.

Have had a couple of falls recently, no particular reason, just keeled over. Slightly worried now about anticoagulants but am under investigation.

When I was first prescribed Xarelto I was given hardly any information, only that it was to stop blood clots , that I was to stay on it for life and to contact doctor if I had unusual bleeding. I did my own research, found your site and got all my information from your forum and the very helpful members, ye are lifesavers

I am so glad to hear about research projects and think this forum is an excellent place to gather info.

I was put on Apixaban after being taken to A&E with PAF. No-one really explained more than the Chadvasc score (I was 1 then) and the danger of stroke associated with AF.

No- one told me that I shouldn’t take neurofen until I tried to buy some at the same time as picking up my pills about 2 years later.

The GP has never checked to see how I was getting on with them and I have never had any kind of anticoagulant check.

I only discovered by chance, 3 years on, that I shouldn’t be taking fish oil with them.

I’m still not sure about grapefruit juice which a friend stopped me drinking!

I have learnt most from this forum but also researched through Google.

Janey1955
Janey1955
in reply to t1cker

I asked my cardiologist about fish oils with apaxiban and he said he could see no reason why I couldn’t take both things

t1cker
t1cker
in reply to Janey1955

Thank you very much for this, Janey. I will ask again!

My cardiac consultant discussed all the options with me after my initial diagnosis. I had no concerns and elected to take Apixaban. I have had no problems with the drug since and expect/hope to continue with it.

There was no discussion. I had been diagnosed with AF and a defective mitral valve and my cardiologist told me that she was putting me on warfarin. That was 15 years ago and I'm still on it and have a test every month. No problems save for some slight bruising under the skin on the backs of my hands. I am 73.

No concerns. It was explained that now I was diagnosed with AF I’d need anticoagulants for the rest of my life. Saw the Clinic and started on the Warfarin journey.

Touch wood no problems. Dear

I had no worries or concerns, I was told the pros and cons when I was started on rivoroxaban and decided if it was gonna help me then I’m having it. Have been on it now for four years with no problems.

After my first afib attack for which I was in hospital for several days the cardiologist put me on Préviscan (a VKA) and they would not let me out till my INR was over 2. Two months later when I saw my own cardiologist he said I could stop it though muttered something about restarting when I hit 65. I was relieved as my INR had been up and down and I had had bad pains in my legs all the time I was on it. After afib reared it's ugly head again after bowel surgery the hospital cardiologist (a different one) wanted to prescribe Apixaban but I was wary about such a recent drug and opted to try Coumadine (Warfarin). My surgeon was happier with this as there is always a possibility that the join in the bowel will undo necessitating another surgery in the first week. However on being discharged from the hospital my INR was not going up fast enough before my twice daily Lovenox jabs were due to finish so my GP switched me to Pradaxa. Awful indigestion and even worse no interest in food ( disaster in France!!!) Again my own cardiologist said I could stop them despite now being 65 as ESC guidelines had changed . I started taking nattokinase but a year later had a mild TIA. I knew I had to take the anticoagulant but still hated having to do so! I now take Apixaban. I have increased joint pain but don't really know if it is Apixaban that is causing it. I do worry a bit if I bump my head and scratches from gardening take ages to heal ( my arms look awful) but I feel reassured strokewise.

Some concerns but specialist was able to reassure me that risk of brain bleed was less on well controlled warfarin than on aspirin

No concerns. Saw it as trade off between taking Apixaban or having a much higher risk of stroke

I was given Apixaban just before and a few weeks after a cardio version to fix flutter. I was back in a few months after when the flutter returned. This together with a couple of episodes of syncope led to a pacemaker and then ablation. Another birthday was enough to put my score up to the number that means I have been on Apixaban since.

Other than being aware of a tendency to bruise and bleed more easily, which I was warned about, I have had no issues with it. Just a nuisance having to take it twice a day, but that's pretty trivial.

I was a bit concerned when first prescribed Apixaban over two years ago, but was more concerned about stroke risk. Never had any problems. 😊

Hi Rachel

I was prescribed a low dose aspirin, had no idea what it did, just knew it was needed. It made my stomach sore, so I stopped taking it without consultation with anyone. After a hospital admission I was put on warfarin, again I don't recall having been told why. Took myself off that and all other pills, when I felt better, as to to start with my AF attacks were quite rare.

It was probably on this site that I learn't they prevented blood clots and strokes. Wouldn't dare stop taking them now.

I hate taking ANY pills though and am still not sure of their efficiency (apart from warfarin). With other heart pills you have to decide whether the benefit outweighs the side effects!

Jean

The opposite. I had to fight my GP to impress on him how urgent it was that I be put on them right away. I’d already had two suspected TIAs. In the end I went to A&E (my one and only time) with a particularly bad bout and the doctor there kept me in overnight. I made a fuss in the morning so he sent me directly to the warfarin clinic which was in the same hospital. That was 2013.

I was prescribed anticoagulants (Warfarin) by the Cardiologist, while I was still in hospital after my second episode of PAH - 18 years ago. I was quite anxious about taking this medication as I had heard of someone who died of a bleed when they fell in the snow due to anticoagulants. However the hospital pharmacist had a very clear and concise talk with me about taking the medication and the benefits of it. It was so worthwhile and focused me on this drug. I took this for 17 years without a problem, checked every 2/3 months until the cardiologist has now changed me to Apixaban, he was worried I would have a bleed if I stayed on it, I have had a couple of bad nose bleeds in the last 18 months, not something I had ever had since I was a child. Only been on Apixaban for 5 months so not sure yet about it. Would like if it was checked to assure me it works!

I now find this forum to be a great source of information and re-assurance, so keep up the good work.

No concerns at all.....

The only thing my GP and Cardiologist approved of as an anticoagulant is 81 mg Aspirin. I am on Aspirin 81 for heart disorders (Tachycardia, Mitral Valve Prolapse nd PVCs I've had since birth) AND also for my Polycythemia Vera 1 to ensure the blood doesn't clot and cause myocardial infarction or stroke. I'm told anything stronger can cause my heart conditions to worsen.

I was put onto warfarin after my first AF episode. Was worried I would have a serious bleed for the first year as no advice given. I guess I got used to it and have learned to keep my NRI constant without giving up vitamin K foods. Now I don't worry and only get tested every two months.

I went into AF July ‘17 and have been prescribed Apixiban ever since. No problems that I’m aware of specifically related to anticoagulant but had two cardioversions and further investigations in hand.

Did you have any initial concerns when first prescribed anticoagulants? NONE

No concerns at all, were prescribed by cardiologist after 2nd AF episode.

Hi I have been subscribed by my E.C Apixaban 5mg which I take with out any problems twice a day. Hope this helps.

Bob

I have been on Apixaban for 4 years. It is the only medication I take that has no appreciable side effects. Everything was explained to me while actually in hospital when my AF first started. I also took part in the 4 year research program and was happy to continue taking Apixaban.

Had no idea what they were for except from the name. Have turned to googling and asking on here. Had a very bad reaction from the first one ticagrelor so the cardiologist changed it.

No- it was pretty clear as to what was entailed with the use of these drugs

Was given Warfarin to take but had a ‘brain bleed’ so now off them.

I was a bit concerned that there was no antidote for Rivaroxaban should there be a serious bleed but otherwise I was happy to take it having had a Pulmonary Embolism. My haematology consultant reassured me by saying I was at a higher risk of another PE having had one and that the anticoagulant would help prevent it, adding that he would have no hesitation in taking art himself in similar circumstances. I then did thorough research on line for further reassurance including the AF Association and HealthUnlocked. I have since been diagnosed with PAF and advised to continue taking the medication.

Yes I had concerns but got my reassurance here. I knew it was coming at age 65 so had time to come to terms with it. Im almost 67 now, still undecided whether I should do things like ride my horse. I do and try to b as safe as I can. Im in the US, my heart doc doesnt do much teaching and minimizes a fib. If it werent for the good people here, I would b a mess.

No concerns as we had a cardiologist advised Riverixiban

I started on warfarin and took it for about 8 months before moving to apixaban. No concerns about apixaban, but the dietary issues with warfarin and frequent INR testing were very concerning to me. No issues with apixaban after 3 years or so. Most of the good information I've learned has come from this forum! Thank you so much for that support!

Hi Rachel

I was prescribed Apixiban some 18 months ago and had major concerns about taking the drug and actually deferred commencing it for two years.

It was a combination of a cardiology consultation at the hospital (where yet again it was suggested that I take it), combined with my (doctor) daughter asking me if I wanted to die that persuaded me to start it. I replied 'no' to my daughter's question, she then told me to 'take the bl**dy drug!'

I did view AF material too which was helpful.

Hope this helps...

So many responses indicating how different our situations are, gender, age, heart condition, medical history.

I have been prescribed Apixaban since last August and not experienced any problems, other than heavy bruising from garden "accidents". Checked with Dr when toes and foot went black and blue, but all disappeared after a few weeks.

As I am 81 and follow this site for most of my information, especially on dosage,which is very useful when I go to the GP as I find their information is limited.

If it helps me to avoid stroke risk then I will continue

I was very concerned when first prescribed anticoagulants (and if I am honest, still am). I was diagnosed with paroxysmal AF and put on Apixaban just over 2 years ago now. I was given no information by either the consultant or the GP, only told that it was critical that I take them. I was not informed of the associated risks when I was put onto this medication or what I should look out for. Neither was I told that the risk of clotting would increase substantially over pre-medication levels should I stop taking them , something as I have since learned from a Danish research study. This is quite alarming!

On two occasions I have sought advice as to whether I need to stop taking them prior to minor surgery - one was a dental intervention, the other removal of a rather large cyst. On both occasions I sought advice both from my GP surgery and the dentist/doctor responsible for carrying out the intervention - on neither occasion did I receive very helpful advice and I was pretty much left to make up my own mind on this as no one was willing to commit to a firm opinion.

There seems to be a woeful lack of information in this areaand no consensus of opinion amongst the professionals. All the information I have gleaned has been obtained through online forums and articles.

I was put on Rivoxiban when in hospital I was given a leaflet to read and a doctor explained why I needed to be on it. At first I thought oh can’t wait to get of these now I realise I want to be on them they could give me a better chance if I were ever to have a stroke unlike my poor mum.

Hi RachelAdmin.

The doctor put me on flechanide anticoagulant when I had my second attack of af. My doctor explained the reason for me needing the anticoagulant and we have never needed to distrust him as he is an excellent doctor. My wife was also put on anticoagulants for af also but different from me because she used to collapse occasionally. We both had no problem excepting that they were safe and we needed them.

LaceyLady
LaceyLady
in reply to Flyer2820

Flecainaide is not an anticoagulant, it’s for heart rhythm

Flyer2820
Flyer2820
in reply to LaceyLady

Hi LaceyLady. You spotted the deliberate mistake (Not) I was lying in bed last night and suddenly realised the mistake, intending to rectify it this morning. You beat me to it. I was taking flechanide for af and riveroxaban for an anticoagulant. I am slowly coming off all my tablets now due to having an ablation which seems to have worked. But not riveroxaban as I will always be taking them. Thanks for your reply.

Regards Flyer.

I think anybody would be concerned when told that they must take a tablet for the rest of their lives. A tablet with a risk attached.

The CHADSVASC scoring does seem to be a very blunt measure as to whether an individual does need an anticoagulant.

It seemed to be a joint decision with a consultant as to whether a dvt and AF at the age of 57 warranted a Anticoagulant.

The consultant wanted to err on the cautious side and I went along with it.......trusting in his expertise.

I was unaware of the AF association at this time.

Unfortunately my GP would put me on Warfarin, despite a NOAC being recommended. At that time the NOACs were relatively unknown and our GP surgery were not prescribing.

Subsequently my GP has agreed and the surgery is now prescribing NOACs as and when.

I am on Rivaroxaban.

I still don't know if I need to take them at age 64.

No problems they put me on warfarin after my opp in 2004 and have been on it ever since.

No concerns being prescribed Apixiban after being diagnosed with AF. Was more concerned regarding risk of stroke.

Been on apixaban for 2 months. I have afib but other than that no other reason to go on them I am only a risk factor 1 for being a woman. However my cardiologist was concerned with the risk of the afib. I was very cautious about taking them but I seem fine on them. I did ask my GP for his advice and he did help with my anxiety

I am a nurse and was very concerned about taking anti coagulants.After my AFib diagnosis I did not take them for about 7 months and then I saw my E/P cardiologist who strongly recommended them as risk of stroke Chad score of 2 ,female over 65.

I was put on Apixapan/Eliquis 2years ago. I didn’t want to take it because it is a fairly new drug and I was aware of the bad news about Pradaxa. Warfarin has been around for a lot longer but my cardiologist persuaded me to take Eliquis which is an expensive drug in the US even with insurance.

My GP has a relative who had a stroke and basically also scared me into taking it.

Thank you for this forum. I have learned a lot about A Fib which my cardiologist calls “ the uninvited guest” who visits me about twice a month. An ablation has been recommended and I am considering it.

Yes, I did have concerns about taking Anticoagulant. My cardiologist reassured me more than once. I’ve been taking it for approximately three years..

I was started on Warfarin and was very enthusiastic to take a Xeralto when it was offered (2013) a few years later. Never had any qualms about taking anticoagulant as it seemed such a logical thing to do .

As an aside I was talking to the technician who did my echocardiogram and the subject got onto marathon runners , a new thought was they should take anticoagulants as the number who suffer strokes is statistically significant.

I had no concerns at all. I was prescribed them by a cardiac nurse in hospital and she went through all concerns in great detail over a good half hour (maybe longer) appointment. I was put on apixaban (Eliquis) back in 2017 and have had no problems with it at all. All I notice is that I bruise more easily as for healing and bleeding I see no difference as I have always healed quickly and stopped bleeding pretty quickly too. My knee surgeon did say that being on blood thinners caused more problems with recovery from my total knee replacement last August as my leg was swollen and bruised for about 6/8 weeks which didn't help with the exercises I had to do.

My GP has had very little input into anything cardiac other than checks and repeat prescriptions.

I have always found it most useful to find a forum like this when you have been diagnosed with a condition as you do get to hear of othere treatments that have not been mentioned and get brilliant advice on how to deal with the nitty gritty of the condition from people who have gone through the same thing.

Yes I was concerned about bleeding if cut . The GP was helpful and reassured me to be confident. I do take more care with DIY now which is good anyway.

I have been on Anticoagulants for 2 years. due to torn muscle and DVT. This was my first visit to my GP in 35 years. Note: The cause of my cancer in my consultants opinion was the prescribing of Quinine Sulphate and drug that is banned in many countries?

The prologue>

1. Initially prescribed with Apixaban 5 mg twice daily for about 18 months and due to suffering side affects such as tingling all over my body including itching and occasional flashes of dizziness my GP decided to put me on Edoxaban 60 mg daily.

2. Now on Edoxaban, initially no side affects but now after 6 months I suffer pain in my fingers such that I lose all dexterity in them, strange tingling in my body and occasion dizzy spells that though last only a micro second are like getting a strong painful electric shock.

3. Despite being 77 I still run daily and weight lift 3 x a week. each time I see my consultant he says the same thing, I am exceptionally fit not only for my age but any age. and my cancer isn't advancing so no further treatment yet. I am considering stopping all medication.

Various answers from GPs at my practice. Some said a score of 1 meant it was practically up to me about risk of bleeding against risk of stroke. Others said to take it. Cardiologist assured me that taking Rivaroxaban was in my own interest and like others have said, forget the horror stories re bleeds. So... I am on the Rivaroxaban and so far so good. Find this forum is the biggest help on advice and reassurance .

I was happy to be prescribed Apixaban in 2017 for Aflutter and Afib as I had sadly lost a sister to a stroke and likely undiagnosed afib six months previous. Sadly, I have lost a second sister in the past year, again to stroke and likely undiagnosed afib. I am grateful I ended in an ER, and furious I couldn’t convince someone to put an event monitor on my sister, as I am one of four sibs with afib. I feel it has saved my life. Need more attention to genetics!

I had a massive stroke Nov 2019. Did not know I had AFIB, had been taking NSAIDS for some leg pain. Clot formed in left atrium and went to brain. Fortunately, we have great first responders and E M S personnel who quickly got me to a hospital where the wonderful team performed a thrombectomy. Came out of recovery with no visible damage..miracle! I take apixiban (will take for rest of my life), metoprolol, flecainide, lisinopril, zoloft, zetia...doing great..EKG showed no AFIB and B P is 120/73, pulse 63. I have no qualms about any of the meds. This website has been very helpful with information on all the meds and how they affect others.

The reassurance I desperately wanted as been provided by the members of this forum and I am very grateful.

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