Advice needed about anticoagulation

[IanB48]

My doctor told is now recommending that I take an anticoagulant to reduce my risk of an AF stroke. However, having done some homework on Warfarin I'm slightly concerned with the changes it may make to my life style as I'm still relatively active and enjoy doing things like DIY. I'm also worried about the changes to my diet and the need for frequent blood tests. Is a Warfarin regime that restrictive and, if so, should I consider some of the newer anticoagulant drugs that seem to be slightly less hassle? I would talk to my doctor but he seems preoccupied and busy and surgery time with him is always limited.

[MarkS]

Hi Ian,

A number of us are oin warfarin and find it has little impact on our lives. I was terrified when I first went on it. I gave up hockey due to the danger of head blows, but then I was getting to the end of my career anyway! However I've found that I need not have worried. I can do what I want (I still lead an active life cycling and travelling) and eat what I want (I have a very varied diet).

I have a Coaguchek monitor so I can check my own INR once a week (takes about 2 minutes). I keep mine in the 2.2-2.8 range consistently. It is really important to keep your INR in range so I'd recommend you get a Coaguchek, it's the best thing I've ever bought.

If you can keep your INR in range, warfarin is actually superior to the new OACs. If you can't keep your INR in range more than 60-70% of the time, then try the new OACs.

With DIY the problem is cuts, they will bleed longer than they would otherwise on any anti-coag, but that's not dangerous as long as you don't cut an artery!

Mark

[IanB48 in reply to MarkS]

Thank you for replying, Mark. It's good to hear something positive and your comments have given me a lot to think about.

Ian

[Mrspat]

I have been on the NOAC Rivaroxaban for 9 months and was previously on Warfarin for a year. The issue for me was keeping in INR range because of the interaction with other medications that I was on at the time, principally several courses of antibiotics that I needed to control an ongoing infection. There are other medications that affect INR as well. I know that some people regard Warfarin as a comfort - I found trying to keep in range and the constant visits to the nurse a intolerable restriction. I have had no problems with Rivaroxaban - cuts and bruises seem no worse than normal.

[IanB48 in reply to Mrspat]

Thanks for your comments. It was good of you to be so helpful.

Ian

[Rellim296]

Well, I hate warfarin - really loathe it, but I still take it after 18 months of difficulty. My surgery think I am stable (I don't agree) but now that I'm on blood tests every two months, I find that concerns about warfarin and the impact it has made on my life have quite taken a back seat. I'm fairly relaxed about what I eat. I avoid cranberries and grapefruit, all herbal and over the counter medication, herbal teas. I go easy on ginger, mango and chick peas, and try to have a green thing or two every day. I drank about 8 glasses of wine last year and no other alcohol. It does impact, really, on my enjoyment of food but it's manageable. I don't much like eating out or at someone else's house. I find the INR tests a dreadful hurdle and have 10 days to go before the next. I had 33 in my first year and things didn't go well at all. I have a less bad attitude thanks to this forum. Your GP should either find time to discuss this with you or delegate. It is not a temporary thing and a significant step to take. The new alternatives are gaining ground and most people seem to like them. I'm scared of warfarin and more scared of the NOACs but I acknowledge that I am being irrational. Cuts and bruises don't seem to be a big issue with either. Good luck!

[IanB48 in reply to Rellim296]

Thanks for your best wishes. You've given me a lot of useful information to think about.

Ian

[Bryonny]

I was prescribed Rivaroxaban just over a year ago. I have never been prescribed Warfarin and on Rivaroxaban I don't have to worry about diet/foods I eat and don't have to go for regular blood tests. I've had no problem with the anticoagulant I am on. I have heard some GPs don't like prescribing the novel anticoagulants because of the cost!

[IanB48 in reply to Bryonny]

I note your comments and, yes, that's why I'm attracted to one of the more modern drugs. You've given me a lot to think about! Thanks for taking the time to reply.

Ian

[IanB48 in reply to Bryonny]

Yes, I've heard the about cost being a factor as well! Thanks for your advice. Very much appreciated.

Ian

[Jenbo6]

I have been on Apixaban for several months but it took a lot to get it prescribed by my GP as ' they only do Warfarin'

No hassle, eat what you like, great. I had a tooth extracted with very little bleeding.

Obviously it's a personal choice but I didn't want the daily worry of being in range and blood tests. Apixaban is taken every 12 hours so the possibility of bleed problems can be overcome apparently.

We all have our favourite form of anti coagulant, so please make an informed choice by doing your homework - I read up a lot about the choice of new drugs to decide which I thought would be best for me. The most important thing is to be on something.

Good luck

[IanB48 in reply to Jenbo6]

Yes, I take your point about doing homework! I'm certainly doing a lot of that thanks to helpful comments on this website. Thanks for taking the time to reply.

Ian

[Hidden]

Hi Ian

I'm a farmer and I'm on Warfarin. Nicks, cuts, grazes, bruises happen almost daily. It hasn't been a problem although things take a little longer (sometimes) to heal. I asked my EP if I should change to one of the new anti-coagulants, and he said no because Warfarin has an antidote (vitamin K) which when injected will work within 20 minutes. So if I had a bad accident, which is a higher risk for me than "normal" people, I'm better off on Warfarin, he said.

I haven't changed my diet or my life one bit. We have meat, veg, sometimes veg only, salad, chocolate. I just avoid cranberry and grapefruit (can't remember why grapefruit but I hate the stuff anyhow).

Koll

[IanB48 in reply to Hidden]

Very down-to -earth advice and much appreciated. Thank you, Koll.

Ian

[IanB48 in reply to Hidden]

Hi Koll, just to let you know I started Warfarin last week. The nurse at the Warfarin clinic has been incredibly sensible and supportive and - so far - the whole process has been hassle free.. Many thanks, Ian

[Lal531]

I agree with Mrs Pat, rivaroxaban is one of the new ways forward. We all have different blood chemistry, so warfarin can affect people in different ways. As of course canrivaroxaban, but there are more flexibilities with the new drugs. Especially whenit comes to cuts, bruises and surgery.

Cheers

Lal

[IanB48 in reply to Lal531]

Thanks Lal. I'm certainly getting lots of advice to help me make a decision. Thanks for taking the time to share your thoughts.

Ian

[Mamamarilyn]

Have just started on Pradaxa because my INR didn't stabilise with Warfarin although I had no other problems with it. I was on 2-weekly visits to the clinic at my local hospital but after 18 months of this and a little persuasion on my part I made the switch on Monday. So fingers crossed! Would love to hear of other people's experience on Pradaxa.

[IanB48 in reply to Mamamarilyn]

Thanks Mamamarilyn. I hope your change in medication is successful. I appreciated your advice.

Ian

[Kiplingharry in reply to Mamamarilyn]

Have been on Pradaxa since last August without significant problems with one exception. If I take it just before a meal I get an acid stomach. I now take it about two hours after eating a meal and just before bedtime.

[Mamamarilyn in reply to Kiplingharry]

Many thanks for your response.....I've taken it on an empty stomach for two mornings and have a feeling I might have to do something different as my stomach has felt uncomfortable afterwards.

[Maggie5]

I have been taking Dabigatran for over two years, the only issue I have is night sweats , used to suffer with migraine ( at least one a month ) but since being on Dabigatran have only had one in that two years , no blood tests ,no change in diet , and I have a glass or two of wine at weekends

[IanB48 in reply to Maggie5]

Thanks for your very interesting facts about Dabigatran. Hope things continue to go well for you. Keep enjoying the wine!

Ian

[Mamamarilyn in reply to Maggie5]

Thanks Maggie. Hope I don't start night-sweats....mind you maybe at 68 I might be less prone to having them, here's hoping.

Keep well!

[Offcut]

healio.com/cardiology/arrhy...

Good read. i have been on warfarin since 1992 and not looking to change until I am 70.

Be Well

[IanB48 in reply to Offcut]

Thanks for your best wishes which I happily return. Thank you also for your comments.

Ian

[Hidden in reply to Offcut]

Why when you are 70 Offcut?

[Offcut in reply to Hidden]

Higher risk of cranial bleeds at 70 when on warfarin.

[Mattpga]

I've been on warfarin for nearly a year, and after initial confusion about diet it think it really boils down to continue with your normal diet (apart from cranberry and grapefruit) and don't start eating tons of leafy greens or avocado or the other listed foods if you don't already. I haven't changed my diet, INR stable on 2.8 and gone from weekly to once every 2 months for INR check. I still go to the gym, still run, i just get a few more bruises but the impact on my life is minimal, but i did find the information and advice given about diet to be confusing at first.

[IanB48 in reply to Mattpga]

Yes, I take your point about confusing dietary advice. From what my doc told me it sounded as if I'd be living on fresh air so it's been useful to get a bit more detail from someone who's actually experienced Warfarin

[IanB48 in reply to Mattpga]

Sorry, I forgot to add my sincere thanks to my last message. Many apologies!

[IanB48 in reply to Mattpga]

Hi Mattpga. Just to let you know that I started Warfarin last week and, just as you said,have found it a very easy process to manage. Thanks once again for your help.

[Mattpga in reply to IanB48]

yr welcome. Not too bad is it! Once the diet confusion was cleared up for me by anticoag clinic nurse its been a breeze

[Jason1971]

Hi Ian, I guess the biggest inconvenience is the tests, or getting to them. I wasn't looking forward to starting warfarin, I thought everything I enjoyed would have to stop E.G Food, hobbies and pastimes, but it's really not the case. I have to travel a little to get my levels checked, but the test is so simple a finger prick of blood it taken, fed into a machine and BINGO they inform me if I need to take more or less tablets. I'm very active and they have found my dosage has to be increased now and again, but other than the odd issue it's fine. I still play football, all be it in a Veterans league now, so it's not as fast flowing and I carry on with other activities. If I get a cut it takes a little longer to stop bleeding and I do bruise easier, but there are worse things out there.

[IanB48 in reply to Jason1971]

Hi Jason 1971. Many polities for not replying to your message to me about Anticoagulation. I have now started Warfarin and - so far - have not experienced any difficulties. Support from the Warfarin clinic has been really good: practical and sensible. Thanks for your help and support.

[IanB48 in reply to Jason1971]

Sorry - just seen the typo. Should be apologies!!!

[Langara]

At the moment I am on Warfarin and having to have my INR checked every week because a yukky cold and varied Christmas diet sent it a bit haywire, but hey ho no real problem. I play golf at least 2 or 3 times a week, often suffering cuts and scratches from rummaging in shrubbery trying to retrieve golf balls ( I must learn how to keep to the fairways!), but so far I have not suffered any prolonged bleeding or long lasting bruises. I have not stopped doing anything because I take Warfarin. It, along with other medication, is simply another pill which takes a second to swallow and then I forget about it.

[IanB48 in reply to Langara]

Hi Langara, Many apologies for not replying sooner after you took the bother to reply to my original question. I started Warfarin a week ago and so far have not found it to be any hassle at all. Thanks for the advice. Ian

[Finvola]

I have been taking Apixaban for a year without any side effects that I am aware of. The only thing I was told to avoid is St John's wort or anything containing it. My cardio said it is his preferred AntI-coagulant as it has the lowest bleed factor.

As yet the new drugs have no reversal agent, but I believe the manufacturers are close to making one available. I have had several small mishaps and a large tooth extraction - with no excessive bleeding problems, apart from my own worry that is.

[IanB48 in reply to Finvola]

Hi Finvola, I think I forgot to reply to your very helpful comments. That have given me a lot to think about. Have a happy, healthy 2015.

[Wightbaby]

I was terrrifed of taking Warfarin, mainly coz the initiation was handled very very badly at my GP's surgery, but I had had a blood clot in my arm, so jusy went for it in the end!

Beancounter reported just before Xmas that cranberries are considered OK now....but not cranberry juice!!!...Rather strange.......

Rellim I think every 8 weeks is not enough frequency for testing. I will be doing a post on this later. I get very anxious when the month comes around.........its the variations in between that worry me.......

[Rellim296 in reply to Wightbaby]

Yes, I completely agree, Wightbaby. I was concerned when they put me onto 6 weekly tests and said so and was told I worry too much. Next INR was exactly the same as the one before, so it moved to 8 weeks. I then made an appointment with my GP to have my say but when the day came he was ill and I haven't made another appointment as I'm actually quite enjoying not being INR'd every five minutes. The crunch comes when I've shot sky high or dropped down low!

I know I should be self testing, but we bought a little ECG thing and then the software to print out the ECGs it stores and then a Fitbit (which I love) and I went to Patients' Day in Birmingham and to London twice last year and it all makes me feel I'm spending enough on AF and reluctant to spend anything on something that ties me to warfarin.

[IanB48 in reply to Wightbaby]

Hi Wightbaby,

Thanks for your reply and for taking the time to offer your advice.

Ian

[NJ47]

Hi Ian,

When I knew I had to go on anticoagulation, I thought through exactly the same stuff as your good self. When the subject was raised whilst in hospital last November, the Cardiologist who spoke with me told me that GP's will nearly always recommend Warfarin because it is cheaper, and advised that I clearly explain why I didn't want Warfarin.

When I saw my main Cardiologist on Christmas Eve, he had already been given the message by the hospital Cardio and I simply explained that Warfarin wouldn't suit my lifestyle.

If you do the same, I'm sure you'll get the same result. I am on one of the NOAC's called Riveroxaban and so far, so good.

I really wish you well in choosing the medication that suits you. Any probs, please feel free to pm me and I'll give you plan 'B'.

All the best,

Nige

[IanB48 in reply to NJ47]

Hi Nige,

Thank you for taking the time to reply and for your concern. Thanks also for your offer of further advice if I need it. This was very much appreciated.

Kind regards,

Ian

[NJ47 in reply to IanB48]

Any time, Ian.

[Hidden]

G'day Ian,

I have only made two or three concessions to Warfarin - based on Cardiologists advice when put on it initially - no cranberry products, no grapefruit and minimising my intake of dark green veggies (Vitamin K). also it is highly desirable - if not essential - that you are consistent in all your food intake. Also no 'bingeing' of any sort, food or drink. I was diagnosed with AF in Jan 2010 (aged 65) and have been on warfarin ever since - no problems with it - my very bestest friend ... ever.

However, a word - the new NOAC's - to the best of my knowledge - have no antidote at all. They are also considerably more expensive than Warfarin and seem (depending on which part of UK you are in) to be prescribed to those who just cannot handle warfarin - and there are many who can't deal with it. That said, according to NICE there are technically and legally no real restrictions on who can be prescribed it. I wouldn't touch them at all as the Australian Government Dept of Health , Theraputic Goods Administration have issued some Health Safety Advisory's on reactions to some of these NOAC's. In any event, as I said, I have no problem with Warfarin anyway.

I'm now 70, still drive buses but now on a part time basis, and still pass my DVLA PCV Bus Licence medical each year. I also travel back to and from Australia regularly and have no issues with warfarin at all - or with AF for that matter. I still booze on, still drink tea and coffee - but - always pace myself. Consistency !!

As has been mentioned on here already - I have my own Coaguchek XS device and I self test all the time (and take it with me whenever I travel) and although I have problems with my Cornish GP about this but have taken the matter up with my CCG and told them I am now not only going to self test but self manage my doses too. Awaiting a response from them. When I lived in Surrey I had no problems with my GP and the practice I was with used this device and were totally supportive. Again its all a matter of where in UK you live and how progressive your GP is. Have a look at the Roche website too and search their website under Coaguchek XS system. While you are online 'Google' stuff like .... Warfarin and vitamin K, or - Warfarin and diet, or Warfarin and food and research theses topics yourself. Meanwhile I continue living life to the full and quite normally. I also have an App on my smartphone which prompts me to take my various medications, including warfarin, at whatever time of day I need to and I have found this invaluable and ensures I don't forget to take my doses. (Consistency again). Have been known to be a bit of a party animal and come home and forget to take my doses Missing a dose can be a problem in terms of stability of your INR readings. I am now on 42 day reports for INR testing. Good luck

John

(from Cornwall)

[IanB48 in reply to Hidden]

Hi John,

And thanks for your invredibly detailed, lengthy reply which I found extremely helpful. At this stage, it looks as if I'll give Warfarin a try initially as I now think I can be positive and make it work for me as I want. You sound as if you enjoy life and I want to do that as well!

Have a very happy, healthy 2015.

Ian (also from Cornwall!)

[Christo4]

IanB48

Having read all the posts what have you decided to take?

I were on Warfarin had problems with my INR it was up and down with others it can be no problem, I had two strokes and bleeds, I have changed just one day ago to Rivaroxaban having read good reports I felt it was the right move for me, I did not decide myself about this change I have been under the care of a very good speclist, my last visit was for an hour so no rush !

It's early days for me, I have a feeling not going for INR tests and always wondering if I were in spec is going to be far better then having another stroke !

I wish you all the best.

Christo.

[IanB48 in reply to Christo4]

Hi Christo and thanks for your comments and interest. At this stage I think I'm going to be very positive and try Warfarin on the premise that I can and will make it work for me. In the unlikely event I can't, then I can consider the newer drugs.

Have a happy and healthy 2015,

Ian