Hello, this is the first time I have posted a message and firstly want to say how helpful and informative I have found the forum. Would appreciate any help regarding Warfarin. Diagnosed with AF four years ago. Apart from two A & E visits because of erratic heart and very regular palpitations throughout the four years I am ok but Cardiologist decided I should be prescribed Warfarin. Took my first tablets last night (very reluctantly) and didn't have a good night at all. Felt as though my throat was swollen and I couldn't swallow properly. Woke this morning with a cracking headache. Is this something anyone else has experienced and what sort of side effects am I likely to get. Thanks in advance
Took first Warfarin tablets last night - Atrial Fibrillati...
Took first Warfarin tablets last night
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Nan1
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Firstly welcome to the forum, loads of supportive people around to help.
I don't take Wafarin so couldn't really answer from a personal viewpoint but I am guessing, as you were very reluctant, you are also worrying and would guess this is more likely to be the cause of your symptoms. Not medically trained though so if symptoms persist see your GP ASAP.
A few people here report side effects but I think they tend to be mostly gastrointestinal. Did you read the leaflet for side effects and are those noted side effects? If in doubt ask to see your GP and discuss with him/her. Most people here view Wafarin as their friend, sometimes a rather pesky one, as it will offer a degree of protection from stroke, which is the major complication of AF episodes. Sometimes it can all be in the perception. Hope your symptoms clear soon.
Best wishes.
Thanks for such a quick reply. Yes I have looked at side effects and the throat is mentioned in the "rare side effects" but I don't think that relates to me. Will see how tonight goes and visit GP if in doubt. Thanks again.
BobDVolunteer
We are all different so I can't comment on your particular problems but find myself that reading the side effects usually gives me them all! lol Most people have little or no problems with warfarin and are grateful to be on it to ensure they are not at increased risk of stroke. The few side effects I have seen mentioned on here are thinning or brittle hair and in my case brittle nails. and occasional bloating which I haven't experienced in the ten years I have been on it. I still do not undersstand why people are reluctant to take it or are scared of it. Aspirin is more likely to cause damage whilst offering very limited if any protection. OK for a VERY few people warfarin may be a problem but more often than not it is the inability to stay in INR range rather than serious side effects. For those people we now have NOACs thankfully, but they really are a minority.
Bob
Bob I have written a long list of what makes me reluctant to take warfarin. Just writing it down has made me feel a bit better.
Then share it and we can explain why your fears are not valid.
Bob
Warning: Please take very little notice of this list as it is compiled by a complainer:
a) taking yet another pill and being at risk of its side effects - e.g. thinning hair
b) being told that I have to give up cranberries and grapefruit and not eat them ever again
c) being given a booklet that tells me the regime being imposed is life long
d) carrying said booklet around and having the little card in my purse
e) having to attend the surgery - to have my finger stabbed - at frequent intervals and feeling the dose allocated is not what I really need and being told the nurse knows best and being cross as I drive home
f) having to watch what I eat
g) having to look at a menu and choose what is not unsuitable rather than what I fancy and being cross
h) feeling bad about going to someone else's house and wonder whether to be rude and say I can't eat that or eat it and wonder just how bad an idea it was
i) looking at packets to see if there are cranberries hidden within
j) feeling one is enduring the regime to have a woeful INR which is neither here not there and leaves one feeling inadequately protected with six weeks to go before another test
k) being scared of the potato peeler and the dishwasher, so full of threatening blades and prongs.
l) seeing a cranberry something on almost every aisle of the supermarket and coming home cross
m) having strange little painful bruises that appear for no good reason unless it's the warfarin or something else
I am currently just eating my way through almost anything and everything and not caring one bit about my INR which is probably plummeting. I don't have any faith in my metabolism's ability to remain static. I tried really hard to toe the line and only just got away with it when it mattered and now I'm going to pay no more than lip service to the rules and just thin it down the week before my next test.
PS It is, of course AF that is at the root of all this. If I hadn't already given up alcohol completely, and spicy foods and caffeine (apart from one cup per day) to ward off AF and salt to keep BP down, I would be less unwilling to accept dietary restraint.
in order, here are my comments
.a) you can always stop taking warfarin you can't undo a stroke
b) Why not- I do at Christmas
c) This IS your life now so try to accept it.It is still a wonderful life and you are not under a death sentence like some people
d) I don;t carry yellow book but do have a card in wallet
e) small price to pay for safety. I am on 12 week test ( similar gap for blood test post cancer treatment)
f) Why? I don;t. just eat sensibly and don;t binge on any one food
g) see above
h) Why? eat what you want
i) don;t get obsessed about these things
j) if you really can't get into a steady range after a year ask about NOACs
k) nonsense I build race car engines and frequently knock bits off myself ditto looking after wild garden . Haven't bled to death yet.
l) stop looking
m) My wife-- not on warfarin-- bruises more easily that I do and always has.
By the way although many doctors get all exited about it there is no evidence that caffeine causes any problems nor the occasional small drink. BInge drinking is BAD and has been known to start AF I avoid caffeine myself due to other post cancer treatment problems. and still enjoy my decaf tea or coffee.
Bob
Thanks for this thoughtful and helpful reply. Like you, my other half is on a no caffeine regime following cancer treatment. He does occasionally have a proper coffee. His treatment regime has made my own look quite tame, but his has been short term and he's off zoladex now and I have to adjust to the permanence of AF. My own brush with cancer was 22 years ago, so I do consider myself lucky to be alive. Will follow your advice, and experiment bit by bit. I have a friend on warfarin and he told me at the start to pay no attention to the rules, but he did this with diabetes too which I think was maybe not the best.
I am indeed going to give up shopping and buy on line, especially now that our local Asda has had a makeover and nothing is where it used to be. Sainsbury's who are 23 miles away will deliver.
My zoladex finishes in August. Been on it for three years.
Bob
Such a long time! It's not at all nice. We sleep better now than we did - I didn't slumber well when a clammy husband would suddenly throw off the duvet ten times a night. In comparison, warfarin's definitely not got so many disadvantages.
Couldn't agree more with your comments. I have now been on warfarin for 18 months and have not changed my diet or lifestyle one iota apart from avoiding cranberry juice. I occasionally have a few berries mixed up with my breakfast cereal as my wife has them. In fact, my diet has probably got worse over this time. Blimey, at my age, I want to enjoy the rest of my days !
Last week, saw my cardio who delighted me with the news I had a leaky mitral valve to go with the AF...so in 6 months it looks like I'm under the knife. C'est la vie.
As I've said before, be the boss and don't let the condition rule your life. I remember the days when I had no medical conditions at all; yet I still got aches and pains, loss of appetite, dizzy spells, loss of memory, temper tantrums, bad dreams et al....you name it, I've had them all like everyone does, I'm sure. Don't blame your condition for everything; mostly it's just the way life is.
My apologies and sympathy to anyone who is really suffering physically or mentally as I did in the early days but try to stay positive.
Thank you for putting my thoughts into words. I would add to the list - knowing that nearly every other medication you take interacts with warfarin, especially antibiotics, and every time they adjust the dose it affects the INR.
I have had no side effects or problems with warfarin. The tablets taste absolutely vile so need swallowing very quickly. Like you I was very wary of starting to take them. Aspirin upset my stomach badly. Beyond avoiding cranberry juice and broccoli I eat everything as normal - especially my favourite peas and sprouts. Best wishes.
I'm not on warfarin and have to admit the thought of it scares me, but I have taken a daily mini aspirin for many years, 15+, and never had problem. I try to buy the ones with the enteric coating but can't always get them so then take the uncoated ones.
I also carry full 300mg aspirin around with me in case I ever felt I needed one (not happened yet) or incase I came across someone having a heart attack. Also, I always take a full aspirin for 3 days before and 3 days after flying (read somewhere to do that).
Hi Nan and welcome to the forum. I've taken warfarin for many years and have found that it's better for me to take it in the morning mid breakfast. Taking it at night made my stomach and throat sore.
Strange how we all react, I quickly established a correct INR and take 6mg per day
I have at least one curry and one chillie per week
Drink about 2bottles of red plus 3 or 4 pints a week
Love broccoli so eat it, but no cranberry juice
I have though limited myself to 2 caffeine drinks per day
We are a strange lot us AF folk
Try not to worry - please
Thank you all so much for your replies. It is good to know you are all there to answer queries. Took second dose earlier this evening and so far so good. I am sure I will get used to the medication. Just out of interest one thing that scares me is the thought of losing hair. Have many of you experienced this as a side effect?
Ten months on and the answer is not really, but it is a worry, although it is no doubt better to have thin hair than to have had a stroke.
Yes I had thinning hair. What was really upsetting was that I had the same problem when on a high dose of Amiodarone. It was OK on a lower dose. I was put on on Warfarin after heart surgery so I can't honestly say whether my body was reacting to the surgery or the Warfarin. Not on warfarin now. I've never had really thick hair but things seem OK.
have been taking warfarin since last August and no problems whatsoever- please don't worry!
I have been taking it for 15 months and no hair loss or other side effects. I eat what I want including broccoli, spinach, coffee, red wine. The main thing is to try to be consistent and not binge on anything.
Once you have reached the desired INR level you could get your own machine and do most of your own testing (£299). It gives a feeling of being in control.
I would ask why you take it at all if you are not going to do it properly. It is a dangerous drug and needs to be treated with respect. Too little and you could have a stroke, too much can cause a bleed. So don't pay lip service to it but don't become its slave. Treat it well and it will protect you.
I acknowledge that paying lip service only is not the way forward. One should stick to the rules.
For me the problem is that when I treat warfarin well and purposely live an extremely consistent life, it doesn't seem to protect me very convincingly. My yellow book is far from exemplary.
I take warfarin to please my children and the medical profession. I feel I am in a no win situation but it's also an opportunity to hunt for inner strength and fortitude.
mumknowsbestVolunteer
There are other anticoagulants available now. I have been on warfarin and haven't stopped or given up anything and broccoli is my favourite green veg
Eileen
I have taken Warfarin for 9 months now without any discernible side effects but my INR fluctuates from 1.8 to 2.8 and I go for blood tests every two weeks. The reason, the anticoagulant nurse explained, is that I don't eat regularly. My diet is healthy and I don't drink alcohol but apparently one of the clues to stable INR is eating small amounts of high VitK foods regularly rather than than greater quantities once or twice a week. Everyone seems to agree that cranberries and grapefruit can wreak havoc with INR so I avoid those. As others have identified their specific triggers, caffeine and chocolate being commonly occurring ones (unfortunately) we can become aware of what does and doesn't work for us as individuals.
I reckon it's important not to become to worrisome about what we eat so that we control our condition rather than it controlling us.
Happy healthy Wednesday everyone!
Hi Nan and welcome... I have been on Warfarin since before Christmas, no side effects to mention except a bit bunged up (putting it politely and no, I don't have a cold thank you) - no thinning hair, a bit of bruising but nothing I can't handle and I've had to give up the knife-throwing act. Thank goodness I can't stand cranberries, I have a real excuse to run away from them now! Try not to worry, I find my throat tightens if I start fretting. Hopefully it will all settle down soon - if you have any symptom you are worried about, just take it to the doctor asap... Sending best hugs to all.
Lis
I have been on warfarin and was scared at first. It certainly took a while to stabilize me but I bought a testing machine which has meant that I can regulate what I am eating according to the I.N.R. reading if I want to. To be honest now that I am more confident I don't really worry about what I'm eating. I am so grateful to be able to take a drug that lessens my chance of a stroke that I would be willing to accept thinning hair but as it happens I have had no side effects at all.x
I have been on Warfarin since 1992 and I am still here 
it does go up and down the only thing I do not take a lot of is broccoli. If you have a steady regular diet then it should all settle on its own once you go through the blood taking and it becomes a less often occurrence.
Be Well
Does it strike anyone else as absurd that we even need to have a discussion about changing our behaviour/diet /medication just because a drug can't cope with someone leading the kind of ordinary life others take for granted? Doesn't it mean that the drug is only doing half the job? Are there any other examples of drugs that require the patient to fit in with it to such a great extent? Stop repeating the "better to put up with minor inconveniences than have a stroke" mantra and start campaigning for the alternatives to be made safer.
We took it for granted until comparatively recently that one would buy a roll of film from the chemist, pop it into the camera, take a couple of dud pictures and wind on and then have 12, 24 or 36 (38 if you were very lucky) exposures, then rewind the film into the canister, remove it and take it or send it away to be developed and printed at huge expense. How Dark Ages does this seem now? Two of the doctors at my surgery have said that warfarin with its quirks may well be a drug that has had its day, and it may be that in five years nearly everyone could be on the newer alternatives - or else that they too will have fallen from popularity and warfarin will rule.
Your are probably right there but for now, the extra expense of the NOACs will see warfarin at the top table for a while yet and I repeat that for the vast majority of patients it is perfectly fine. The people who come her and talk about problems are the frightened newbies and those with a real problem which contra indicates the drug. For the others it is such a non event that they don;t even think about it.
Bob
I've taken warfarin for a year and it doesn't cause me any problems. Like you from what I read I was worried. I don't notice any difference, even small cuts like when shaving seem to stop as before.
I would give it a chance. Without being patronising perhaps the worry and stress about it are causing your probs. Relax take it ,ignore it and see what happens. Good luck. Gerry
I have been taking warfarin for 2 years now and have no ill effects. Only problem was going backwards and forward to have INR checked because it was erratic. Have since bought my own monitoring machine £299 all extras paid for by surgery. This has been brilliant and if ever I am concerned my INR off track I check it and make minor adjustments if required. Re your headaches, have friend also on warfarin and he has narrowed down his headaches specifically to taking warfarin. Just as an extra pain, the new medication to replace warfarin also has been shown to effect a small number of patients with hallucinations. Check your pharmacist and all the best. Beano 11
Hi I have been taking warfarin since being diagnosed with af 18mths ago yes I to take decaf coffee and don't drink canberry juice anymore but eat and drink most things when I was told that I had af I told the gp to give me warfarin I want to keep as safe as possible I can go 2/3 mths between blood test dont read any leaflets inside medications otherwise I think I have it all
Thanks for reply. This might be a stupid question but does it matter if I have my main meal of the day at different times. For instance one day it might be more convenient to have it at lunch time and other days in the evening.
First apologies for butting into your thread on repeated occasions and ranting when you are just taking the first steps into the weird or wonderful (depends on one's viewpoint) world of warfarin.
There is probably no need to worry about swapping the timing of meals. Many people express the view that one should not be enslaved by medication, so living life mostly as you would like to is probably the best way forward.
However, something like the five-and-two diet when one has (I believe) five normal days and two of something like yoghurt and bananas might be frowned on!
I do hope you find you take to warfarin like a duck to water, like lots of people do.
My warfarin nurse told me I had a bad attitude and I know this is so, but it happens to be the attitude I have. I understand the benefits but see the requirements of the warfarin regime as an intrusion on my freedom of choice. My life feels impoverished by it. I've been incandescent, resigned, despondent, uncertain and occasionally (like when I got to 2.2 for the first time) triumphant, and then appalled - when I shot up to 3.5. Roller coaster.
I have learnt a lot since joining the forum recently. I have been in paf for three weeks now so have succumbed to the dreaded warfarin and continue to inject heparin into my stomach each day. We'll my husband does bless him. I certainly resemble a very battered and bruised pin cushion. Anyway not sure what has changed causing permanent af. Maybe work stress or menopause but have to face the fact that I'm getting older. My doctor has given me two weeks off work so I can adjust and adapt to the next chapter of my life. Let's hope the sun stays. I am concerned about alcohol as I do like to be sociable at the week ends. I suppose this will effect the irn blood test due on Monday?
Wishing all fellow warfarin nites well x
BobDVolunteer
This may not be the end. You need to see a specialist to see if the AF can be reverted in whoch case an ablation may help.
Bob
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