After my recent post about my intolerance to thinners. GP visit, now on 2.5 MG X 2 daily with pill in pocket top up if I flip back into AF. Still having side effects although less back & stomach ache/bloated/breathless(guessing due to less oxygen in blood?) Thick head/bloating/weak. GP referred me to Cardiologist- which was rejected, I must try all meds, more weeks of misery. I had my gall bladder removed 10 years ago and asked if that could affect meds intolerance, was told no.
GP has referred me to Gastrointestinal - i suspect PPIs messed up my system (I never had a problem with acid previously) she did let it slip that some don't get on with the new thinners and went back to Warfarin.
Please Warfarin users, what are the does/dont's/ restrictions, do you have to be strict with food? In my previous life, pre AF (March 23) I always ate plenty of fruit and veg, always had salad on fridge. Non red meat 30+, diet= 1/3 chicken 1/3 fish 1/3 vegetables. Although not much in fridge lately as appetite diminished greatly to cereals ,soup , no incentive to food prep.
Are you one who tried the new thinners but headed back to Warfarin,Experiences/ side effects?
Seriously thinking as a Chad's score 2, age and sex, binning the lot and taking my chances, after all , I was left in persistent AF for 3 weeks before someone deemed to precribe thinners!as it is, not much QOL can't plan, as don't know how I'll feel...
I have gone from being an active, exercising, 69 year old , young at heart lady who liked to travel, make plans and do things to someone with no energy or motivation, I'm trying hard.....but I just want my old self back .
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All yopu have to do is be consistent with your diet and your INR will stabilise. In fact teh moer the merrier with vegetables as any variation is % wise much less if you eat a lot to start with. The actuial does of warafarin is unimportant as only the result is what matters. Some people may take 3mg and other 15 or more to get the same INR.
So if appetite comes back (lost 1.5 stone , every cloud) I can eat as I did ( which wasnt large meals) but all vegetables ? How often do you test, have you tried new thinners and any side effects?
I’ve been on Warfarin for very many years and my INR never has stabilised and I have blood tests almost every two week even though I keep strictly to the Warfarin precautions. Here is a list from my Warfarin Clinic at my hospital where I still have to go for the INR tests. Hope this helps.
Thank you for your reply. The last paragraph of foods would be a lot of my diet gone. I like greens, a s a non red meat eater I eat soya and cheese ( when I feel well). Can't win it seems
I don’t eat any meat at all, not that I’m vegetarian it’s just that I don’t like meat, and I avoid the vegetables on that list and I stay very fit and healthy. I do miss Cranberries, though. But I have to stay on Warfarin for the rest of my life due to a mechanical heart valve replacement.
When I was on warfarin, I said to the specialist nurse the same as you, about not being able to eat so many of the veg I normally did. She explained that so long as you are consistent and don’t chop and change the amounts it wasn’t an issue, it’s only if you are erratic and binge. So I just carried on with my veg. I take Xarelto now so it isn’t an issue.
I don’t want to worry you but should your GP not be looking further than intolerance considering your symptoms? They could just have been the last straw for a completely different ailment? I would be wanting some tests and a scan…..
Please note that you do not have to avoid green vegetables nor any foods apart from grapefruit and cranberries. The byword is consistency ! Eg do not suddenly deviate ftom eating , say a large helping of broccoli or Brussels sprouts one day and then no similar green veg for a further few days.
I've never seriously considered changing to one of the DOACs ...as they say " if it ain't broke why fix it". I have my own testing kit so regular blood tests present no problems for me.
I've been on Warfarin for many years and don't think too much about what I eat. I know what I shouldn't have, so don't, just second nature to me now. Honestly it's no big deal. I have my own INR measuring machine and am usually in the correct range when I self test.
Warfarin has been around for 50ish years. The new anticoagulants around 10.
Hi, You ask .................... Please Warfarin users, what are the does/dont's/ restrictions, do you have to be strict with food? In my previous life, pre AF (March 23) I always ate plenty of fruit and veg, always had salad on fridge. Non red meat 30+, diet= 1/3 chicken 1/3 fish 1/3 vegetables. Although not much in fridge lately as appetite diminished greatly to cereals ,soup , no incentive to food prep.
I've been on Warfarin for 13 years, 14 in January. I've never ever been a fruit and veg person and I have no issues with Warfarin. In fact I've never made any concessions to Warfarin .. EVER .. that includes booze ! I have no trouble with maintaining a steady INR ... my INR Clinic reckon I'm boring and/or not very challenging. My INR always hovers in the range 2.2 to 2.7 ... nice. Very very occasionally it goes outta range and we just tweak the dose.
In the early days of my AF, in early 2010, I found food (causing massive and painful bloating ) to be a trigger for AF kicking in following a range of gut symptoms ( not heart ) and my GP ran some blood tests for Coeliac Disease and IBS - all clear. I then gave up with GP and consulted a Nutritionist. After her treatment and spread over several years my gut issues disappeared and with them so did my AF. My current GP has tried to get me to take these NOAC's but I've refused, using the line ... if it ain't broke don't fix it. I don't consider that NHS healthcare professionals as very skilled at diagnosing food intolerances/ allergies. Private Nutritionists do and have been a saviour for me.
It is a more increasing fact that although many good folk can't hack Warfarin ..... increasingly many can't hack the NOAC's either and do in fact go back to Warfarin.
I can't recall your earlier post but this one seems to lay all the blame for your issues with Warfarin ........ I'm wondering why so ? What evidence do you have ? I also wonder if you are on a range of ther meds too ?
Ducky - if you read my reply you'll see I was acknowledging one para ......... as an easy reference I highlighted it in BOLD and ITALICS ........ this was what I was commenting on.
"I can't recall your earlier post but this one seems to lay all the blame for your issues with Warfarin ........ I'm wondering why so ? What evidence do you have"
And this was the paragraph on your reply, which I was responding to....... in BOLD as an easy reference 😊. To clarify again, the lady is not on Warfarin so is clearly not blaming any of her issues on it, just asking if it would be better than what she does actually take.😊
Thanks for your enlightening reply. Not blaming Warfarin, working my way through all the thinners due to bad side effects. Was hoping to avoid all the checking , restrictions and monitoring with it (although it might not suit me either, just that and dabigatran left).
But people seemed relaxed, chilled about taking it, which is why I asked for experiences. Only on thinners , I stopped adizem, PR too low and light headed.
I have had similar problems to you. I have had all of the NOAC’s and also Warfarin.
Started on Apixaban, after a few months caused severe nausea and generally feeling unwell. Next came Dabigatran 150mg x2 daily. Same thing happened. Next came Rivaroxaban. This caused an acute gastritis with a gastric ulcer and some bleeding. Tried Edoxaban, but this contains a filler that I am intolerant to.
My cardiologist referred me to a haematologist who said I should try Warfarin. This was a nightmare. I just couldn’t keep in range even though I resorted to eating the same meals on the same day every week (boring). Then after a few months the severe nausea re started.
Also Warfarin was not easily available on my area. There was a testing clinic but you then had to take the yellow book to the pharmacy. Only problem was, that if out of range they wouldn’t give any tablets. How am I supposed to get back in range with no tablets?
The haematologist suggested that I have the reduced dose of Dabigatran 110mg twice a day and I have been ok on that. That was my last option.
Hopefully, in the not too distant future, I will be having a mini maze which should remove the need for anti coagulants and all of the other nasty meds that I am on.
What other anticoagulants have you tried? If you haven’t tried it, try Dabigatran. It is also worth giving Warfarin a try. We are all different and it may suit you. There are a few on here who have taken Warfarin successfully for many years.
I've tried apixaban 5mg, rivaroxaban, edoxaban all twice, now on 2.5mg X 2 times daily (with optional PIL extra to take if I flip back). Suspect omaprazole messed up My system (stopped now) to too low acid, want to get that checked. Was trying to avoid dabigitran after researching and reviews, it's acidic and causes abdominal pain, heartburn my stomach has barely got over PPI if at all.
Even 2.5 apixaban is causing problems, I don't understand why the 9pm one doesn't seem to cause pain/discomfort, but the 9am one does, perhaps something to do with a slower metabolism at night, I don't know?
I have always taken all anticoagulants with plenty of water and also with food. Never on an empty stomach. They do say take with or without food, but especially after what Rivaroxaban did to my stomach I am very careful.
I take Dabigatran at 8am and 8pm. The usual dose is 150mg twice a day, which I can’t tolerate. I take 110mg twice a day.
As for side effects, I get hair loss, which I get with all anticoagulants. While not nice for a female, it’s better than having a stroke.
It sounds as if you are very sensitive to meds like I am.
Yes, I tried all ways with meds before, during and after food, plenty of water, no difference. I could take basic over the counter meds paracetamol, ibuprofen etc in the past, but system is not tolerant. Thanks for your replies
Hi. I was put on Warfarin about 10 years ago when I was first diagnosed with PAF. I tolerated it without any problems except fairly early on when I would see a red ring around y poo in the toilet. When I mentioned this to my first cardiologist (horrid man), he sent me for a colonoscopy and everything was fine. Eventually the red ring went away. I was always told by the GP and nurses, eat what you like as they would just adjust the dosage to suit me so that my INR was within range. I didn't like the idea of it because basically it's rat poison. I mentioned it again to my second cardiologist (wonderful man) and he said Warfarin has been around for so long that they know everything about it so to stick with it. However, during the pandemic, my GP suggested I switch to Rivaroxaban as I was at risk and it would mean that I didn't have to go to the surgery for INR checks. I checked with my cardiologist and he said it was a good idea so reluctantly, I changed to Rivaroxaban. Haven't experienced any problems and on the plus side, I only had to stop it for one day before my recent ablation rather than the 5 days necessary for Warfarin. Coming up to 5 weeks post ablation and all OK so far. I'm 69 next week. Good luck with whatever you decide to do
Thank you for your reply, it all helps me to decide next option, only two left. although I don't think I have a choice. Cardiologist referral from GP rejected, ( haven't seen one yet)advised to try all meds options.
I had catheter RF ablation so not sure if that's different. Don't understand why your cardiology referral was rejected as they may have some new ideas for you to try. Is your AF ongoing or is it paroxysmal and if so, how frequent?
Relitively new to all this.Had first episode end March triggered by (unknowningly ) shingles, was in persistent ( on meds which only slowed rate, didn't convert back)AF until 19th May had first cardioversion. Lasted 3.5 months, I got back on track a bit with back fitness walking 4/5 miles in thinners discomfort respite window. Then 3 weeks ago, I woke up in AF. I was in abdominal pain on and off for weeks, even went to a & e after 7 hours of it, didn't flip back then wake up and it's back. They cardioverted me back in A &E still NSR ..touching wood.
They work here on 3 strikes (shocks) and you're out, then they look at other options. From what I've read, seems meds only delay things and perhaps ablation is better sooner than later, so I thinking of going with that. Only ever see arrhythmia nurses and GP. Guessing I'm not priority.....yet.
I was first sent by my GP to another GP with cardio speciality. They did ECG, Echocardiogram etc - all normal but put me on Warfarin. After about 3 trips to A&E, my BP tablet (Diltiazem) was increased to 300mg and was then referred to a cardiologist who officially diagnosed paroxysmal AF and offered me an ablation. I didn't fancy this but after several appointments and various tests to see if the AF was physiological ie nuclear medicine test which led to an angiogram, I was told there was nothing physically wrong with my heart. As AF cannot always be explained, it was agreed that stress was probably my main trigger. I did what I could to avoid stress (difficult as I worked in a hospital), stopped caffeine and cut right down on my drinking and episodes were about 9 months apart. However, as I had been told, the AF gradually became more frequent even after retiring to the point that over the last couple of years, it was happening every month. So during my next appointment (telephone) I asked to go on the waiting list for an ablation as it is more successful if you have it whilst still not in permanent AF. Luckily, I've always managed to get rid of the AF with a Flecainide PIP so never had to have a cardioversion (so far anyway). My arrhythmia nurses have been great so talk to them. Maybe they can get you an appointment with an EP cardiologist to discuss options and blood thinners. I do wish you good luck
Thank you. I've talked to nurses, but there's only so much they can do. Seeing them on 9th October, going to push for some answers, although doubt anyone will be interested until I flip again. Wish you well too.
Waited about 18 months for ablation and yes, I will have to stay on the anticoagulants probably because I had a possible TIA in 2001 which I put down to a migraine but erring on the side of caution, they've decided I should take the Rivaroxaban. I will ask though when I get my follow-up appointment
I have been on warfarin for 14 years without problem. I suggest you consider two things if you take up warfarin:
1. Get a Coagucheck monitor. I test roughly once every 2 weeks.
2. Take Vitamin K2 tablets. I take a 90mcg tablet p.d. This helps stabilise your INR by reducing the impact of diet changes.
I have been in the right INR range (2-3) about 98% of the time, If you are in range more than 70% of the time, then warfarin is more effective than DOACs.
I nearly always have a very salad heavy lunch (lettuce, toms, celery, peppers, kimchi, etc.) and spinach or broccoli most nights. Otherwise my diet is very varied (Italian, Turkish, Indian, Thai or fish fingers!).
What I particularly like about warfarin is that I'm in charge and I don't have to rely on a drug which I can't monitor.
Thank you for your reply, it's helpful. I'm guessing that like others as your happy, you haven't tried the new DOAC , just wondering how they'd compare. No problems if you travel abroad etc? Normally I love salads, but all gone out the window lately, I'm expecting it to be a while for INR to settle as not eating Normally for me lately.
Snap! I can't get on with any of the thinners, and warfarin diet restrictions just couldn't be good for me, I need salads, green veg and fruit. I left thinners off and took aspirin but I had a stroke, a friend was taking Xarelto when she had a stroke. I mentioned this to a cardiologist I paid to see and he said "Ah! Xarelto, Apixaban, all the same. Some people just get strokes. I recommend you continue with Xarelto." I get breathless, tight chest, feel faint, daren't go anywhere alone lest I need to lie down before fainting. No more dancing, playing in the ukulele band, lunching out with friends, swimming. They all tell me there's nothing wrong, but never mention the meds, except my lovely GP who has changed my meds til there's no more choice.
We can use natural food remedies, turmeric, garlic, etc, but how to know quantities and effects?
Warfarin does have restriction until you can get the balance it right. Once you have the warfarin and food intake of greens right if you stick to the same everyday there lies the balance.
I have the added consideration of thyroxin I take as through discovered with a shadow on my thyroid which was biopsied and yes it was papiliary thyroid cancer in lobes and 12 right lymphs showed 2 affected.
Warfarin says take the same greens day to day then the test will remain the same to take in this greenery.
I couldn’t take apixaban and have a new warfarin prescription, but haven’t started on it. I’m rural for one thing, and only have Afib episodes every few weeks, and feel better every time I reduce or quit a med and eat more fruits and veggies. I’ve been researching my risk of ischemic stroke, which blood thinners would address, versus hemorrhage, and like everybody else the future is still a mystery. In my situation, I’ve decided not to take warfarin, but to take nattokinase, which is an unregulated supplement, but has scientifically proven anti clotting properties. So that’s my personal decision though it carries no weight with the clinic people who are pushing me to get on more drugs (in the u.s.)
Like you I don't have a gall bladder. Mine had disintegrated. Problems with acid from a little girl.
Reading all about loss of gall bladder means starting off each day right.
Drink a glass of water with some lemon/lime in it.
I had ca thyroid so I have water and thyroxin pills to start every day one hour before food but then my Diltiazem 120mg needs no food for 1/2 hour.
I have PRADAXA 110mg twice day. Taking it twice means the load is halved.
PRADAXA I'm told has a hard capsule so I take it with fruit, banana, raw apple and I have never had trouble.
Warfarin you need to gauge your greenery but the new modern ones you don't but I keep the greens dowm. Reason they can take away the work of the anti-co.agluants.
Remember because of no G/Bladder the biledrips into your stomach all the time. No regulation as what you eat/meds you take.
You are 2 and I am 3 on the chad score. I had a stroke 2019 and AF. 4 days in whilsrt having a carotid scan the scanner saw a shadow on my thyroid.
4 months and lots of arguments amongst my triage team, endocrinlogist disagreed. She wanted the thyroidectomy to be 6mths down the track. It was done at 4 months and out of the 12 right lymphs 2 were affected by the cancer.
I am sure with a good look at your diet you should be able to take your anti......
Thanks for your reply. During the 10 years since gall bladder removal, I never noticed any difference apart from no more excruciating pain ,also,the day after eating something greasy (i.e melted cheese!) When I had to go, I HAD to go. I was told that after op, that the body adjusts ref bile, but I appreciate that some does drip down, so I nibble/graze during the day to use up bile hopefully. I've never had any problems with acid or this abdominal pain until I was given PPI -omaprazole, then things seemed to ease when I stopped it, but I've read that it can take up to months for the stomach to re-regulate acid level.
Like you though, I considered a link and have asked more than one 'professional' who have dismissed it. Hoping for GI referral and I will as the questions again. I feel that there is more than one thing going on that may affect/ may not affect the meds . Wishing you well.
You know the worse items of food are: fat on chicken, melted cheese, avocado until months after.
Chezels.
You know the episodes that you had.
I was given the stomach O.......... before gall bladder was removed. Surgeon said that I had more keyholes because the gall bladder bits were stuck to other organs.
I have 2 stainless steel clips but some folks have up to 25!
I can still have reflux if I bend over after a meal.
They say that lots of small meals are better.
So glad that you are getting balanced. It takes a while.
Thanx for your good wishes.
I would like the heart rhymn to switch back to normal heart beat.
Sorry to hear of your problems and concerns. As others have advised, don’t deny yourself but continue to eat vegetables, greens etc.(which contains Vit K), your warfarin dose will adjust if tested on a regular basis.
Try though to be fairly consistent with food, in quantity and type. Warfarin doesn’t like fasting diets for example. In fact Warfarin likes consistency in all things, where possible, including exercise.
This will minimise your INR results varying too much.
With regards to PPI’s, don’t take them for too long if possible. Extended use can cause pain and bloating for some people.
This is from someone who has had permanent AF for 20years, and has taken PPI’s over a long time because of a hiatus hernia.
Of course this is my experience, and may be different for others.
Recently I was prescribed Rivaroxaban (20mg daily). for AF. 3 weeks later, my IBS started getting worse. So the cardiologist changed the med to Apixaban 5mg BD. It did not help and I am currently getting 3 hours sleep a night or so. Not good for QOL.
Have had a colonoscopy and all is well, so nothing bad is likely.
Some 10 years ago I was prescribed amitriptyline 10mg or 20mg, and it was very effective. My IBS actually got better.
This time around. my GP would not prescribe it because it is contraindicated with arrhythmia.
"[Do not take Apixaban] if you have heart problems such as disturbances in heart rhythm which are seen on an electrocardiogram (ECG), heart block, or coronary artery disease"
This comes from the package leaflet.
My cardiologist wrote to the GP and said that 10 or 20mg was OK. I am now taking 20mg of amitriptyline at nought, and the signs are positive. I have been on amitriptyline now for 2 weeks and have got a good night's sleep for the last 2 nights, so it took a while to be effective. .
There is no doubt at all in my mind that the IBS I suffer has been made worse by the anticoagulant (either Rivaroxaban or Apixaban. ).
The alternative was going to be warfarin. I don't know if that would have been helpful, but I was put off it because of the INF stuff, and the fact that it was yet another unknown quantity (to me)
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