I slipped into recurrent episodes of fast AF back in August 2013 with no real route cause ever identified. I went through 4 DC cardioversions (and 1 bout of nasty kidney stones) in 3 months. Several combinations of meds were tried after each cardioversion, but only Dronederone actually got things under control (combined with Bisoprolol).
Ultimately, I've been warfarinised and started on the Waiting list for Ablation therapy on New Year's Eve 2013. It's 5 months later and I'm still waiting. I've been on warfarin since the end of January. My INR has only hit the range of 2-3 once in the last 13 weeks despite following the advice concerning diet and vitamin K etc. There have been no changes to other meds for my arthritis in the last 4 weeks.
My most recent blood test has seen my INR remain at 1.6, despite the increase of my Warfarin to just under 8mg per day. I had a call from the clinic basically accusing me of missing doses, and using the line "we're worried we don't know what to do with this you had quite a big increase last time you're at high risk of stroke if it's not in range and we'll check it in 2 weeks after putting you up to bang on 8mg a day"
Not exactly what I wanted to hear.
Has anyone else had experience of misbehaving INR? Also, is 6 months the average wait for Ablation these days? (it's been 9 months since I was referred to a specialist by my local cardiologist). I feel like I'm getting nowhere!
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jedimasterlincoln
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If your INR is constantly low, why do they not increase your dose of Warfarin before? I'm over 8mgs a day and many people are on more. Don't think the dose matters, just the INR, that's my understanding. My INR has gone down lately, so my dose was increased 3 days a week to 9, the other 4 days I'm on 7.5mg. It still stuck on 1.6 for a few weeks, then suddenly shot up to 2.5 in 7 days! Just waiting for another result next week to see whether it's going up or back down again. EP says I'm to stay on Warfarin because it's best as I'm due for another procedure/ablation/EP Study.
Got to agree with the waiting lists, it's all very, very sloooooow, unless you're private. My first ablation was done privately by the same EP I'm with now under the NHS, and I think I waited 6-8 weeks, and it was done out of normal hours.
I wasn't happy with the attitude towards the fact the INR had dropped out of range to 1.6 three weeks ago and had stayed at that despite the dose increase..... like it was my fault for doing/eating what I've been doing all the time! Particularly as I work in healthcare! And then to put the fear of god into you by saying "if it's out of range it's not doing it's job and you're at high risk of stroke" wasn't a great day today!
I suppose it's a bit like the black arts, for the first 3 weeks of my warfarin stating it only moved 0.2 units despite weekly increases!
That is a dreadful attitude to take. If you are taking what they recommend and aware of dietary limits, you can do no more. To suggest that you might be missing doses and/or to remind you that you could be at risk of a stroke, smacks of someone who doesn't know their job ( in which case put someone on who does) and someone who doesn't care (in which case change vocation). Keep at it - and hope you get sorted soon.
Yes getting your INR in range can be tricky for some, and others just sail right in. I test from 1.8 to 3.1 on exactly the same dosage currently. All I would say consistent diet is often the key, all you have to avoid is cranberry juice and eat everything else but in moderation if dark green veggies.
But why did they make you wait so long to go onto warfarin?, you should probably have been on very soon after diagnosis, and usually always for a planned cardioversion.
Koll is right however the dosage is irrelevant, higher dose or lower dose only the INR counts.
It was the cardiologist I saw in December, some 8 weeks after my 4th Cardioversion that warfarinised me. Before that I was on a daily Aspirin. None of the cardioversions were "planned" in the sense that I was on a waiting list for them - the cardioversions were the only things that would revert me back to NSR. They were all done within about 12 hours of being admitted to hospital with fast AF, chest pains, dizzyness etc....
Hi Jedimasterlincoln, I can't give you any details of warfarin, as I am not on them myself, but a lot of people on this forum discuss the numbers etc. My main reason for replying is to say that its a difficult road and makes it worse by some who want to blame you rather than discuss properly. Its a vunerable time when you are hit with so many things going wrong with your body and with new regimes to be undertaken. I found this hard to accept as I am not usually sick. You say you are a health professional which could make it that more difficult to accept and you might need to be more assertive with your questions to those taking care of you without feeling a traitor to your own profession, you need not accept the blame when it is thrown over to you.
Also, and don't know whether this is relevant, I discovered that the computer system they use does not do any forecasting. Once I had an INR that was clearly dropping every month. It went from 3.3 down to 2.0 (the bottom of the range) over a period of 4-5 months. When it reached 2.0 and still on a clear downward slope, the software that generates the yellow ticket left me on the same dose simply because I was still in range. It wouldn't have changed it till I went out of range!!! So I phoned them and spoke to a nurse who said that was what their computer does and she increased my dose immediately before it went out of range.
I've also had the same when going up and up each month. I had to intervene because it was obvious that it was going to go through the roof. But the system left me on the same high dose and also a long time till the next test ! Not a good idea.
Yes Koll I don't like this new system they use. My INR is 2.2 and falling, I prefer mine to be 2.5 but they won't increase my dose, and I know it will drop next time
Eileen
INR is notoriously difficult - some people manage to stay in range and others fight to, for no good reason and it's certainly not your fault, your practice should be ashamed and need to be told that, too. I'm on 8mg of warfarin a day and when I commented that it seemed like a lot, the nurse just said everyone's different, it's not to do with how big you are or even what you eat, necessarily. So don't let them get you down... They should just be pushing your dose up gently till you get in range.
How are you doing you may have picked up my post, I have not been feeling to well very tired and not myself.
Been for my blood test this morning so we shall see what my INR is up to ! You seen to be having your INR test around the same time as me,how are things with you ?
Sorry, I haven't looked at the posts today because one of our dogs is really ill and I've not been able to concentrate on the normal things - silly, I know... I'm really sorry to hear you've not been feeling so good, do you think it's the AF or maybe a virus of some sort? Have you been to your GP? Fingers crossed for your blood test - mine is on the 22nd, six weeks from last time - it seems like a huge gap to me! I just hope yours is in range. Let me know how it goes - and I hope you feel better soon.
Sorry to hear about your dog do hope he she is better soon,try not to worry it will do you no good.
I think it's because of this AF I'm not feeling well it will pass as these things always do,I thought at the time When I sent a posting you did not come back to me as you always do if I post anything.
I find out what my INR is today, like you I do not like these long gaps until the next test, it's been 5 weeks for me which in my mind to long until we know for sure we are in spec, you are now a week behind mer so please let me know how you get on and also how you dog Is doing,does he or she have a name,We just loves dogs what kind are they ?
Take care now and don't worry to much about your little friends.
He is still at the vet's, thank you for asking - I'm trying not to but he is very ill so it is a worry. I'm sorry I didn't post back, I was a bit stressed yesterday. I will keep my fingers crossed for your INR, I hope it's in range - hopefully we are both getting a bit more stable. My test is due on the 22nd so I will let you know how it goes. We have two dogs, Hamish and Lexie, and it is Hamish who is ill - they are Gordon Setters, so big black and tan dogs, Hamish is a lovely boy and I'm just hoping he pulls through. His immune system has started attacking him, his red blood cell count was really low - I'm hoping he is starting to fight back - I have my fingers tightly crossed!
Will keep my fingers crossed for your dog Liz. It is heartbreak to see them suffer. At least he is in the right place to have anything that needs to be done.xx
Hope Hamish is soon feeling better, I know what your going through we lost our little Tessa a good few years ago we were all so upset, these dogs are a part of the family.Keep me posted.
He just passed away Christo - what he had was very severe and fast, but thankfully he wasn't in pain. Thanks to you and Dedeottie for your good wishes. Oddly I'm not in AF...
Do not worry that 8mg is a high dose, I have taken 13mg a day for the last 18 years which gives me an INR of around 2.8 and with absolutely no side effects or repercussions whatsoever. So my advice to you would be to push for a higher dose with weekly monitoring at your clinic until you reach the desired level.
Nothing seems to go very fast, only the beat. I waited for a year after a failed cardioversion before I had another which also failed. Have just gone private to see a consultant only to be told that as I've had 2 failed cardioversions and they don't know how long I've had AF that the chance of an successful ablation is poor. Where we go from here whatever it is will no doubt be a long wait. So don't worry you will get there in the end.
You are getting somewhere, but it can feel very uphill - and it is all too familiar. My INR was 2.0 on 8.0mg per day, 1.8 on 8.3mg the next week (bitter blow) 1.8 again the following week when I'd been on 8.6mg (further dismay) and bingo, a week later on 8.8, I'd got to 2.2. It was the first time in 8 months that I'd got over 2.0.
I was just short of a year from cardiologist appointment to ablation, which would have been sooner had it not been for the wandering INR. I have found warfarin a real struggle. I am hoping you have seen the specialist, not waiting for an appointment.
I was referred to the EP from my cardiologist after 3rd emergency cardioversion in October. Appt was supposed to be end of Jan, but after another cardioversion in November it got moved to Dec 31st.
When I saw him in clinic he said he'd get me sorted in "a couple of months" but when I rang the waiting list co ordinator in feb she said we were looking at June and it was a 6 month waiting list......... I guess it's pretty common!
Yes, mine was 8 months from EP appointment to ablation. June's not far away! Hope you can get your INR sorted so it doesn't hold you up. Are they planning to have weekly tests for you? I had to have an INR over 2.0 for four consecutive weeks. On the day it was 3.5, but did not seem to be a problem.
I think in the past 4 months I've only been in range for a fortnight, other than that it's been stuck at 1.6-1.8. They're only testing me every fortnight at the moment. I used to be needlephobic but thankfully that's been avoided now!
I think you should be having weekly tests & your warfarin dosage should be increased weekly until it is in range. If you are only having fortnightly tests it's going to take so much longer. I have been on warfarin for over a year now & have had INR tests either weekly or fortnightly. I was told a couple of times to leave it for a month but I got it checked earlier as I didn't think it was stable enough & it would have gone out of range. Presently I'm taking 9mg one day & 8mg the next. I was taking 9mg daily for a while. I have had to query the dosage they have told me to take at times, especially when my other medications have been changed as that usually affects my INR.They should be helping you more - it's not your fault. I hope you can get into range soon as it is worrying when it isn't.
hi jedimasterlincoln I have been on wharfin now for last 5 years had no probs hit the target 2.20 2.7 and am on 3mg daily. my AF occurrs every year round about march.. this year it was bad dose of AF ended up in A&E however after cardovarsion 5th i am allright now. best soltion when you go into AF go staight to local A&E they should sort you out. If this fails call for an ambulance to take you to your local A&E as for the nurse in your practice take no notice just ask to be through to a doctor then complain to him/her about the attitude of the nurse I cann't complain about NHS as a few years ago a young doctor in A&E saved my wife's life. (Blood Clots)
My INR is proving difficult. I've gone from 3mg (only reached 1.5) to 6mg (reached 4.1) and back down to 4mg (2.4) but I will see what this second blood test says, i suspect it will have dropped to around 1.9. I'm doing everything they told me to do. I cant have the cardioversion done until i am between 2.5 and 3.5 for four weeks solid.
Well, after the last 2 weeks and the only thing changing in my diet being NO EGGS I appear to have hit 2.0. My diet/work/fluid intake/number of times I've blinked has stayed the same and the only thing different in the last 14 days has been eggs, 8mg a day has took me to 2.0.
So, for the next 2 weeks until my next blood test, I'll do the same again.... and ignore eggs.
You will probably need to prove you have an INR that has been stable for 4 weeks, so I would be trying to get an idea of an ablation date and then get the INR tests organised. My surgery insisted I had blood taken from the elbow weekly (as opposed to the finger). Push to get an INR around 2.5 so that little wavers will not send you back to square one. It's no fun being there time after time.
Eat everything you like but keep it routine as much as possible
I'm on warfarin since 13 years and 98% of my time in stable INR others changes due to adding other medication or dental works
Avoid huge amount of crane berry , cabbage , Spanish all that green food for a day
Summary keep your diet stable , no major changes with your green intake but eat everything you want and let the lab to adjust your warfarin based on your food not the opposite even if it is by 10 mg dose or more
It is the lab mistake for not finding for you yet the suitable dose not yours
I can very much related to this post, I was also so accused of missing doses... which I had to say made me feel hopeless at the time, I've been waiting for a urgent pvi ablation since January, but having great difficulty in maintaining 4 consecutive inr readings, I take 8mg two days and 9mg the other five this usually keeps me just above 2 but for some un known reason I've gone up to 4 yesterday and now this threatens to cancel my booked pvi ablation on Monday morning.....
So I get where your coming from, it is disheartening and feels like yr getting no where but persistence is key with all this, when the clinic blamed me for my readings being out I felt I was doing things all wrong..... what has come of this is I brushed off what they said, avoided to no no foods and just carried on exactly as I did before, wine included...... warfarin should taylor around you and your life style don't let it control you! All the very best...
For clots in my lung for more than 40 years (off & on) even admitted in the hospital or no hematologist has been able to regulate me on Warfarin for the same reasons you mentioned. My INR would change from normal to low or high and their increasing or lowing the dose didn't matter. Now I am on Xarelto 20 mg. and am doing well . By the way, you don't need testing on Xarelto & there aren't any diet restrictions.
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INR reading 3.1
Worried 
Doacs v Warfarin
I'm on the waiting list for an Ablation now
