Help with anticogaulants

I started taking Rivoroxiban 6 months ago but had to stop recently because it was making me feel very unwell.

My EP prescribed Apixiban as a replacement , but last week after only 4 doses I had a violent reaction to it, coughing up blood, blurred vision , rash etc etc so had to stop that.

I'm now waiting for my EP to get back to me about what's next. I'm worried that Wharfarin is the only option left, is there anything else?

I really don't want to go through the hell of regular blood testing and restricted diets.

Feeling very miserable today

39 Replies

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  • Sorry I do not understand restricted diet and I have been on warfarin for eleven years. OK no cranberry but other than that eat normally and consistently. I have NEVER changed the way I live or eat to suite warfarin and have always made it suit me.

    Many people have quite unjust objections to the drug and whilst yes there are people who have trouble staying in range for most it is a non event.

    Mind you, you still have two more NOACs to try yet.

  • Thanks BobD, I guess you can read too much on the interwebs.

    I'm not a drinker, but sometimes on a Saturday night it's nice to have a pint.

    Also sometimes I'll eat a load of green stuff and sometimes I don't.

    Not at all bothered by cranberries though.

    Good to hear I've got a couple of noac to try first though.

  • I have been taking Pradaxa ( dabigatran ) for 18 months. It was prescribed alongside an antacid originally. This turned out to be wrong as Pradaxa needs an acid stomach. Once I'd binned the antacid I had no further trouble. Warfarin caused me no problems beyond the difficulty maintaining the INR for no apparent reason. It certainly didn't affect my stomach.

  • Having taken pradaxa for 18 months, I have been taking omeprazol for a lot longer. As far as I can tell, there is nothing troubling about them. Maybe it only suits some people and not others.

  • I have been on wafarin with no problems for two and half years . I drink a few beers on Saturday nights butt limit it to 3 pints. I eat normally

  • It was the consistent eating that I found restrictive Bob. Same amount of and the same type of food every day is a restriction IMO. This isn't the same as bingeing and I love fresh fruit and veg.

  • Strange because I never think about what I eat. Some days we have non meat meals. some days curry and some plain old bangers and mash. Some days if it is my wife's day off we go out for a full English at a riverside cafe, some days peanut butter on toast whilst unloading the dishwasher. The only food I avoid is broccoli and I was never too keen on that anyway. The only time I ever go out of range is when I actually pay attention to what the vampire tells me. Their computer program is rubbish. These days I ignore them, nod convincingly and go back to what I have taken for the last eleven years. Better than 85% of time in range isn't bad? Lucky me.

  • I have broccoli most days. The nurse I trust at the surgery says that it is not as bad as the leafier types of veg.

  • Broccoli is not that high in vitamin K. The front runner is parsley (way out in front) then spinach, kale and spring cabbage (collard greens) - leafy greens, as you say.

  • This is quite an interesting article.

    cecity.com/ncpa/2012_projec...

  • I love spinach 😒

  • No problem! If you are on Warfarin, you can eat it (ideally every day) and take a higher dose.

  • As you have been on it for 11 years and it suits you, you probably don"t need to think about something that you do automatically. I am sure I'm not the only one who was given a shed load of literature by the hospital about what and what not to eat while on warfarin. Unless you test every day, and maybe you do, you cannot be sure how often you are in range.

    I don't think I'll ever agree with you on this one Bob, and I certainly don't think being on warfarin counts as lucky,but at least we have moved away from the "all take warfarin and have an ablation" dogma.

  • As you know / will see I have a warfarin intollerance. Also I had high cholesterol and was on simavastatin for 4.5 months but it through liver function 4 times out so statins are a no no. I also have persistent AF but it is variable. However by adjusting diet have managed to keep cholesterol under control. I find that I can have a good variety of foods, mainly cooked from scratch from fresh ingredients and keep all things balanced though the INR does go out of range sometimes (I am on weekly blood tests). I do eat lean cuts so that helps and cut off fat. Typical things I have are:

    MAINS: Chops (pork, lamb); joints (beef, pork, lamb); chicken (whole and cut up in casseroles); turkey (bought 2 large ones after Easter for £6 and put in freezer); casseroles of multiple types; fish (oily and non-oily); quiche.

    VEGATABLES: Carrots; leeks; onions; cauliflower; turnips; swedes; parsnips; mushrooms; salad items; sweet corn; etc.

    SALADS: Tomatoes; celery; radishes; beetroot (not too much); spring onions; cucumber; peppers, etc.

    FRUITS: Multiple types excluding blueberries and cranberries. I avoid too much of the sweeter fruits at the same time (eg wouldn't have just grapes for dessert). Occassional avocado (really love them) and banana. Also freeze many in summer and autumn.

    SANDWICHES: Use any of the joints, tuna, occasionally cheese (usually cheddar).

    TAKEAWAYS: Never was very keen on them anyway but have fish and chips a couple of times a month, Chinese about four or five times a year but really restrict to basic items that don't have too much sauce (even though local Chinese doesn't use MSG).

    No doubt there are quite a few things that I have missed!!!!

    Avoid very sweet things like jams, marmalade, etc.

    This probably hasn't given you many ideas but if you have a few new ones great. I do miss a few things like liver, avocados, blueberries,

  • Hi Peter, could you tell me why you say not too much beetroot,? I'm on warfarin but I've been having beetroot or drinking beetroot juice every day as I was told it lowers blood pressure. Thanks, Vee

  • I have my 5 or 6 fruit and veg a day and my two glasses of red wine. Perhaps that's why I'm on 8 mg a day!

  • I'm glad not to drink cranberry juice as it has so much sugar in it:-)

    There are not many things that I really have to avoid eating or drinking if having them in moderation. If you are retired the testing is no great inconvenience. I can stay stable if I don't have too many changes of medication for other conditions.

  • I'm 48, work full time have 2 young kids and a GP's surgery that is over subscribed and useless. Not looking forward to this at all

  • Mike. It was an old fashioned idea that the diet had to be restricted but as BobD said let the warfarin work around your diet. The only thing that you may need to do is be a bit more consistent with green veg and green salad.

    When I was having big problems with INR swings I was told to cut out green things but told that it is only a fraction of one percent of people who have this problem. Quite separately a genetic testing showed I had a warfarin intolerance. After 17 months my INR does swing more than most people but they don't want me to try greens again as they want INR reasonably in range for another ablation and possible other procedures.

  • There is truly nothing wrong with warfarin. Make sure you eat as you would normally while they work out your dose and as long as you dont eat loads more fruit and veg or no fruit and veg at all ,allshould be well. I have been put on apixaban temporarily (i think) and i must admit that i am enjoying not being consistent but that is a very small thing in the scheme of things. It is bad luck though that you have had such bad reactions to the other anticoagulants. Good luck x

  • Edoxaban Is the latest AC on the market and has the lowest number of side effects, according to my GP who recommended it. Pradaxa has the best record regarding internal bleeds. Does sound like a nasty reaction! Hope you are able to find an alternative.

  • Hi there Mikee69,

    I go along with BobD's comments and others who have posted on here for you. Warfarin - its one of my best mates ! Why be afraid of it - apart from adverse comments you read online. You can manage your own destiny. I found after a few months passed after AF diagnosis that food tripped me into AF. After tests and a consultation with a Nutritionist I went Gluten Free, Wheat free and picked the eyes out of the FODMAPS DIET, which has had the effect of reducing my AF events to the point my last recorded AF event was in April 2015.

    Apart from those 'Free From's, I make no concessions with food to Warfarin - no concessions that is apart from Cranberry products and Grapefruit. Peas and Runner Beans and baked beans too I don't eat. I eat all the other greens I want - for some reason they disagree with my digestive system, but everything else - Spinach, Cabbage, Broccolli, Sprouts etc. goes down the hatch ! But whatever I eat I do so consistently. I don't binge is what I mean. Oh! yes, I still drink - certain lagers, G & T, and red and white wine are my poisons of choice - no sweat !

    Also, I self test for my INR at home. I use a Coaguchek XS device, I get local support from my GP's INR nurse and get my test strips on prescription. The whole process is a bit similar to a diabetic self testing their blood sugar - a prick of the finger, a drop of blood onto a test strip and bingo a result soon follows. Every 10 tests my GP has me in for a joint INR test, one drop of blood onto her device and one drop of blood onto my device. This is to test the accuracy of my machine.

    When I test at home I get the reading and phone it through to the INR Nurse. She puts the reading into her Coaguchek computer programme and it spits out a result. Then she phones me back, sometimes up to 4 hours later, gives me the new dose (which is usually the same) and a new test date. Sometimes for weird reason I go out of range in which case she adjusts the dose and increases the frequency of tests. Usually though I am around 56 to 70 days between tests - however, I prefer to test more frequently, particularly if I'm on 70 days tests. So because I control my own destiny I take an intermediate test or two myself just for peace of mind. I'm usually in range something like 92% of the time.

    It doesn't affect my ability to travel or go away from home, I often go to Australia, no sweat - I'm 71 now and still work 30 hours a week driving buses - no sweat. I control my own life and destiny.

    Heavan forbid it should happen to you - but I've twice had to come off warfarin for medical reasons, once a CT Scan (with no bridging anticoagulant) and the second, much more demanding, a partial knee replacement where I was given a bridging anticoagulant (Fragmin).

    This is a convoluted way of saying - if you have to go on Warfarin do not fret, it doesn't affect my lifestyle at all.

    Good luck.

    John

  • As you can see, Mikee, there is plenty of support for Warfarin, but singing its praises seems to me a little like saying how easy it is to use the right hand. There's a small minority who don't manage to get on with it and their misfortune (which you so accurately describe) might not apply to you. Good luck!

  • I think if warfarin didn't have it's alternative use as a rat poison (in massive quantities) then we wouldn't worry about it. Most people are pretty stable on it and the testing is often every 6 weeks once you are stable, or you can even buy your own testing machine and your GP will supply strips.

    As for diet I just eat as normally as one can for a most-MI and pre-diabetic. Certainly not the warfarin restricting my diet.

  • All of this is very true, Mike. The problem for those of us who don't get on with Warfarin is that we do as suggested but every time we go for an INR test, it's not what it should be. Up goes the dose and the following week the INR is down. And then come the questions. Do you take your medication as directed? Do you eat of lot of greens? That's when a self imposed restricted diet creeps in because one tries not to drop out of range yet again and one reaches the point when every mouthful is suspect. Everyone else finds it so easy but it if doesn't work for you despite your best efforts and you are frequently having tests weekly, it's no fun. It can undermine one's sense of competence and wellbeing. It's a nightmare if you have a procedure getting postponed time and time again because you don't have a stable INR.

  • My initial problem with warfarin was painful weigh bearing joints. Now that I'm back on it I avoid the 1mg tablets that seemed to cause the problem as the colourings used are an E123 and Amaranth.

  • Ah that's interesting. I found that 1mg tablets don't work for me well so cut up 3mg ones instead

  • In what way do they not work? You can get 0.5mg tablets that have no colouring.

    My doctor and the INR nurse know why I don't take the 1mg but the print out with my dosage says, take 7 x Brown (1mg).

  • It should be saying 1 x 5mg pink and 2 x 1mg brown!!!

  • Indeed, it must be their computer program.

  • Couldn't put it better!

  • I think that it is less used as a rat poison now as they have better alternatives and the rats became tolerant to it.

  • Actually Mike it hasn't been used as a rat poison for years. Reason? They used to give it soaked onto vit K rich grain. DOH! Much newer poisons now so my local rodent officer tells me.

  • It's not the rat poison stigma that worries me. As a family we eat pretty healthily, but buy and eat what we fancy. this week has been lots of green salad , last week wasn't .

    Also I have been intolerant of pretty much every drug thrown at me so far, Amlodipine, Ramipril, Rivaroxaban, Apixaban, Amiodorone....

    Fed up of this whole AF mess , getting stressed about it all which has started the palpitations again. grrr

  • Try and chill !!!!

  • I agree with you Relllim - being on Warfarin affected my wellbeing and I became quite depressed. Every clinic reminded me I had an issue with my heart and then the questioning by the nurses was making me feel I was not managing my lifestyle. Also my life is not consistent enough to eat consistently. Now I am on Apixaban I forget I have AF (99% of the time). As Bob said - some people take to it like a duck to water - unfortunately not this chick! Regards Patricia.

  • I don't think the lucky majority for whom Warfarin works well can understand the impact unstable INR levels can have and trouble staying in range is only half of it.

  • ......... and so the discussion goes on ...... and it always will ....... bit like the 'Ins and Outs' of the EU debate. We'll be re-visiting this discussion again in a few months, just as has happened over the last 6 years or more, on this forum and its predecessor ( and now defunct) Yahoo website.

  • As far as I'm concerned Apixaban and NOAC`s are the best medical research so far for AF,they have been researching a replacement for Warfarin for years!

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