How many of us see Warfarin as a frie... - Atrial Fibrillati...

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How many of us see Warfarin as a friend - clearly lots of us cope really well with it - and how many struggle?

Rellim296 profile image
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33 Replies
BobD profile image
BobDVolunteer

my best friend and no problems staying in range, !2 week tests only.

Bob

Beancounter profile image
BeancounterVolunteer

If I was any more friendly towards it we'd need to get a room.

Really never been a problem, but my INR is like a gooseberry in a lift

Ian

jeanjeannie50 profile image
jeanjeannie50

I used to hate it with a passion, but it's recently turned to love!!!

My night in shining armour to save me.

Jean

dedeottie profile image
dedeottie

My best friend and comfort blanket. Don't care what I have to do to stay in range. I'm just glad its available.x

Rellim296 profile image
Rellim296

Wow, those are pretty positive. I'm a whole lot less enthusiastic, but it hasn't made my hair fall out like I thought it would. I resisted the pressure to take it for weeks, and then when I got my yellow booklet I decided it definitely wasn't for me. Finally, having had flecainide increased and still having AF, caved in and have found it all a bit uphill.

Christo4 profile image
Christo4 in reply to Rellim296

Hello Rellim.

Let me start by saying I am not best pleased to find myself with this problem having to take this meds it has made me feel very tired I'm more used to feeling so well. I'm taking this med knowing I have less chance of a stroke, ok it has made walking much harder for me and every day jobs in the house seems to take longer, just give me a few weeks I will back into walking every day again with a little smile on my face I'm not going to let this AF beat me.....I like to win :-)

It might be uphill for you at the moment wait until it's down hill you may just give a little smile ! We all like to win.

I wish you all the best.

Rellim296 profile image
Rellim296 in reply to Christo4

Thanks for this encouragement Christo4 There have been times when I have got up in the morning and have thought how pleased I would be to find myself in my current situation if I had had a moderate little stroke a little while ago. I have counted my blessings.

pip_pip profile image
pip_pip in reply to Rellim296

hi relim. when you say uphill, do you mean the wafarin is making you feel ill. ? In what way. ? most don't have any side effects. I never had any probs at all. However, the other meds knock me senseless, but not warfarin.

Rellim296 profile image
Rellim296 in reply to pip_pip

No, pip pip, I haven't been feeling ill on warfarin and apart from a weird rash within days of starting it, which went away and could have been totally unrelated, warfarin itself has not caused any physical difficulty. Nor do I actually have any problems when AF strikes. I did have the feeling that I really didn't need an anticoagulant as I don't feel tired, breathless, dizzy, or incapacitated in any way. I didn't get it often, either but have had about 5 or 6 bouts this year. It was uphill in that I didn't make progress with warfarin, had forsaken my usual eating habits and had no tangible benefit with an INR that was barely up to therapeutic range. And I took up so much time at the surgery and was not a happy patient. My INR supervisor has found me a challenge and all the surgery have been very kind. I have moved forwards over the last few months and in some ways the experience has been strengthening. But I intend to move to apixaban at the earliest opportunity.

To sum it up for me ...... without it, I would just be waiting for the stroke to happen. I would be extremely worried to be without it. Not had any problems except a small eye bleed when I started. INR goes up and down quite a lot.

Koll

Langara profile image
Langara

Warfarin is a blessing not a curse as far as I am concerned. It doesn`t give me any problems and I stay in range reasonably well.

Marion62 profile image
Marion62

I am fortunate that I have had no problems with warfarin - and in range for over 12 months on the same dose. I never go anywhere without it.

Rellim296 profile image
Rellim296

I found it difficult to get up to the therapeutic range - it took a month to get to 2 (started on 5mg and bit by bit up to 7.2mg) and from July to February I never had an INR above 2 and was sometimes down to 1.7. The dose pussyfooted (not, I'm told, an unacceptable expression, please don't think about it too much) forward but by the time we had got up to 8.6mg, INR finally jumped up from 1.8 to 2.2. Dose is currently 8.7mg (9mgx5 and 8x2) and INR 2.4 and I do feel (at last) that I have some protection from the stroke ogre. But it has done dreadful things to my enthusiasm and enjoyment of cooking and eating, my temper and my general equilibrium. And my weight, which dropped and then (because I was sorry for myself and ate puddings) went up again. I have also been ridiculously careful with food.

shadski profile image
shadski

Hi I have mixed feelings about it. I have not had any problems with it and love the fact that I am not going to have a stroke because I am taking it. However I don't like having to change my heavy vegetable diet to keep me in range. I am planting my garden and have made the decision that I will probably need to go up on warfarin dose in order to stay in range this summer. I have found a good web site Drgourmet.com that has lots of different kinds of recipes for warfarin and low salt diet.

Rellim296 profile image
Rellim296 in reply to shadski

Thanks. Yes, garden delights certainly encourage one to opt for increased warfarin intake. I looked at Drgourmet and found it helpful, and also purchased an app by James Hollender.

I have mentioned before that I have observed a lack of vitamin K info on packages and wrappers and no warnings about hidden cranberries.

Beancounter profile image
BeancounterVolunteer in reply to Rellim296

HI Rellim

I'm not sure what your anti-coag nurse told you, but there really is no need to worry too much about your diet, avoid cranberry juice, and then eat what the heck you like, the only time you will have problems is dietary inconsitencies which will change your INR. But looking for Vit K in food or even the occasional cranberry is not necessary.

Your nurse also sounds like she was building you up far too slowly, I'm going to guess it's at your local GP, because hospital anti coag specialists are much more gung ho generally, and I really don't understand the effects on your eating, or temper or anything, it's pretty rare for anyone to get side effects with warfarin, and they aren't usually those effects.

Your weight change will effect INR, just try and relax and forget about your diet completely, (except cranberry juice) and I promise you will find it much easier.

And lastly dosage is irrelevant, and merely tells us how much we metabolise, it's INR that matters, not how many or the strength of the tablets.

Be well

Ian

Rellim296 profile image
Rellim296 in reply to Beancounter

Thanks for that. The thing is, I have never, until the last few weeks, reached a comfortable INR ant it felt precarious just getting close and then dropping out of range again. It seemed foolish to rock the boat by eating injudiciously. My other half is on a low fibre diet, and there are lots of vegetables that are unsuitable.

I agree that my warfarin dose crept up too slowly. Yes, it's my local GP surgery and we follow what the computer says. It doesn't know that I missed an ablation just because my INR was too low.

I am trying to keep exercise steadily too. Walked 7 miles the day before an INR test and it had dropped, so I just stop after 4 miles a day now. I have a treadmill, which is safer than being out on the fells. My last fracture was painful and tedious but didn't involve plaster like the others. How sorry for myself do I sound? And much too introspective .. Thanks, Ian for your helpful comments. Will take them on board and am learning a lot thanks to all these responses.

I count warfarin as my 1st best friend, bisoprolol as my second best friend and copious quantities of red wine from either - in no particular order - Australia, South Africa, Chile or Argentina as my 3rd best friend !

Cheers

Aussie John

Rellim296 profile image
Rellim296 in reply to

I've given up alcohol (sob) in an attempt to control AF, but might sneak a little glass of red wine back into my schedule again. Do like to buy Australian - happy memories of wine tasting in the Hunter Valley and elsewhere in Oz!

mumknowsbest profile image
mumknowsbestVolunteer

Hi

As far as I know warfarin does not affect moods etc, are you on any other meds cos it sounds more likely to be one of those. I have been on warfarin for 10 years and never had any problems. As far as diet is concerned, as long as you are consistent in what you eat and don't suddenly binge on anything you should be able to eat anything except cranberries, but at the last AF patients day one of the speakers said that even they were ok.

Eileen

Rellim296 profile image
Rellim296 in reply to mumknowsbest

Thanks for that. My bad temper isn't related to medication, just the impact thereof. In fact warfarin hasn't done terrible things to me like I thought it would. Being vain, i was worried about hair loss, as other things may have already slightly thinned my tresses I fear.

I do miss cranberries. I won't mention my favourite treat, which was really naughty as it had hot watercrust pastry and sausage meat and was delicious, expensive for its size and definitely not good for one.

willhall profile image
willhall

Hi Reliim296

Feel Warfarin gives me protection and peace of mind!.I have been taking it for two years and although it took a few weeks to get a good INR result it worked out eventually .I go to the Warfarin Clinic every 8 weeks and have been on the same dose for months .Do not worry too much about diet as long as it remains fairly healthy,stable and regular!Hope it soon settles for you .

Hazel

Dadog profile image
Dadog

I was told I would probably be on it for the rest of my life, which was pretty scary at the time...but now I would insist that I stay on it. It's a safeguard, an insurance and a good pal. Cheers Warf!

jan-ran profile image
jan-ran

I agree with what most people are saying. I feel safe on warfarin, and it has no noticeable side effects. I hated the idea before I started, but look upon it as a benefit now.

Varina8 profile image
Varina8

When I was diagnosed with paf I looked internet for my risk of stroke--2%. So I refused warfarin when it was recommended after a couple of years. I thought it would be difficult to balance and control when travelling a lot, to Spain, Scandinavia aso. After a friend of mine with paf had a transient stroke I accepted warfarin. It was balanced right away, controls once a month and I continue living several months in Spain. INR every 4 weeks in a private lab, 7€. So It is my good friend and comfort as for so many scribents above

Rellim296 profile image
Rellim296

Thank you to everyone - it's really a big thumbs up for warfarin, as clearly it provides a real sense of security. My incandescence isn't drug related. I think it really goes back to the fact that I have a little bit of AF now and then and it feels as if it has completely taken over my life. I've resented this and need to be more grateful for what I do have.

One bonus has been the wisdom of my children who have both helped me to see the reality of my situation and to deal better with it and the support of my husband who has picked broken china from the floor without criticism and is always supportive and understanding.

If my INR is OK tomorrow, there's a green light for an ablation on Monday.

Penny_08 profile image
Penny_08

Must admit I was rather bitter at first about having to go on warfarin, as my PAF was triggered by lung infection after an emergency operation almost immediately after I retired! However, three months after starting the warfarin, the PAF kicked in suddenly and I felt gratitude for the protection I had been given from stroke, and still feel grateful today.

I was put on Atorvastatin last month and my second INR test today is within range at 2.9 again, with the next INR in four weeks, so am getting on ok again. Have come to terms with becoming ill on my longed-for retirement, knowing it could all have been a lot worse.

Rellim296 profile image
Rellim296

I understand the bitterness completely. It feels to me like one's been enjoying a nice meal and after the main course, it turns out there's no pudding and we're onto the cheese course suddenly.

I do bear in mind the fact that lots of people never get as far through life's menu as those of us in our sixties.

Penny_08 profile image
Penny_08 in reply to Rellim296

That is so true, and I'm very conscious of my relative good luck, compared with so many. The Atorvastatin has restored me to normal liver function in a month and does not seem to be having a strongly negative effect on my INR, so must not complain! All the best to you!

oltimer profile image
oltimer

I have taken myself off of Warfarin as it caused me great distress with untold numbers of nose bleeds all over my clothes , the bedding & the inside of the car. I am now in Sinus Rhythm & I see no use for the product which causes me such inconvenience & distress.

oltimer

Rellim296 profile image
Rellim296 in reply to oltimer

The nose bleeds sound awful. I've found warfarin inconvenient and stressful too, and as there is no guarantee that a stroke will occur, it can feel you're taking it for an intangible gain especially if you have NSR. Then again, as one doctor said to me, you can get away with crossing the road without looking a few times, but in the end a car will hit you and i was persuaded down a route I have found difficult.

keeponticking profile image
keeponticking

Warfarin is probably the most important drug for those of us in the AFib world! taking it over a year with a range of 2.5 to 3.5 but my INR never stays the same. My household revolves around it at this stage but I have a very consistant reminder in my ten year old! Had to give up teasing the cat, shave the legs with great care and my hubby has banned me from peeling the spuds! (tee hee). My big problem though with it is anaemia. Became very anaemic and had to get blood, IV iron and take oral iron daily. Doc thought I had a bleed and did endoscopy and colonoscopy. It was missed originally as most cardiologists dont deal with ladies of my age - 36 - so any ladies out there of childbearing age - please keep a check on your iron levels regularly so u dont end up looking and feeling like tepid death!

Rellim296 profile image
Rellim296 in reply to keeponticking

Thanks for that. i've just had my haemoglobin checked and in fact it is slightly up from the level it was at before I started taking warfarin. Odd, because I thought spinach (which i used to eat in large quantities) was a good source of iron. I'm scared of the potato peeler too.

Hope you now have the upper hand with anaemia.

It's difficult to be ill when you have young children - particularly when you are young yourself. I had two difficult years when my children were between 8 and 6, and I was in my mid forties. My sister was struck down when her youngest was 9. I think that it makes life a little sweeter when one has to face uncertainty. You cherish triumphs, seize opportunities to enjoy and make the most of every day. If i had known then that I had so many years ahead of me (22) I would have been over the moon. My family have not been long livers although I'm the only one with heart issues.

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