Warfarin frustration

[Snootyfox]

Hi, ive been back on Warfarin for over 10 weeks and my dosing is still not right to get my INR at the required level. My dosing is being done by an experienced GP but I cant help think its just not being put up enough. Was on 4mg for ages and it slowly got up to 1.8.After 10 days on 4.5mg its only gone up to 1.9. GP says it will gradually get there and has increased to ave 4.7m daily. I am concerned how long its taking as I am in permanent AF and waiting an ablation. When last on warfarin I went to a coag clinic and I think it only took 4 weeks. Am I at a geater risk of stroke as well? Impatient Fox indeed x

[BobD Volunteer]

This softy softly catchy monkey approach seems the norm nowadays but I had the old bish bosh big dose plan when I was first on it ten years ago. These doctors are really scared of the stuff you know! They are far more worried about you having a bleed than a stroke so I doubt you would get very far complaining. Explain that you are worried and need to be up in range asap for your ablation . You do have some protection of course so don'[t worry too much.

Good luck

Bob

[Snootyfox in reply to BobD]

Thanks Bob, I guess it has changed from my experience 7 yrs ago. I am not a patient patient! I was surprised he put up the dose today but maybe he is finally getting fed up with me too ! I so want to get back some normality in my life. Steph

[Hidden]

Hi Steph, I had the same thing, very gradual increments indeed, half a mg at best and it did seem to take ages, but on the bright side my INR seems to have been very stable since it got in range. I think this is because the computer tells them what dose to give, so there is a bit of 'computer says no' going on if you're trying to push it faster than the program... It will get there, I'm sure!

Lis

[cbsrbpm]

Hi Steph, I am in exactly the same position as you 10 weeks in and still only 1.7 having once gone down again to 1.4 am now on 6mg during week and 7mg weekends. I too am in persistent AF for the last 10 weeks and have my first cardio appointment next wednesday but know they will do very little to return me to SR when not in range. I think we just have to hang on in there! All the best and hope you get there soon.

Brenda

[Snootyfox]

Thanks ladies. Although not good for both of us yet Brenda, its comforting to know someone else is in the same situation. Fingers crossed for us both . Steph

[LittleAine29]

`My INR goes up and down. last week it was the lowest it has ever been at 1.7 now it is back up at 2.7 I am taking 6mg a day just now. I too am in permanent AF but they can't help me as I also have water retention in my legs . A cardio version was booked to try and put me back on track but had to be cancelled because of the water retention. I take warfarin and a water tablet everyday.The warfarin gives me massive panic attacks which make me feel ill for days. I was on beta blokers but the doctor took me off them as I was getting all the side effects but nothing good out of them. Since then I have felt slightly better. The weather is not helping me just now, too close and humid here Today there is a slight breeze which helps, I have had a sleepy day. It is my birthday (56) and I am going out for a meal with my best friend later

I so wanted to feel better by now, but not to be. Sometimes I think there is no light at the end of this tunnel to hell !

[Beancounter Volunteer in reply to LittleAine29]

Hi LittleAine, sorry to hear about your up and down INR, but this is common, the dose you take of warfarin is completely irrelevent, doesn't matter if it's 2mg or 14mg, it's only the INR that matters.

You said "last week" so I am presuming weekly tests and that means fairly new to it, you will settle down soon, remember eat what the heck you like except cranberries and let the warfarin adjust to your diet not the other way round.

Then you say panic attacks?, why warfarin is a very easy drug to take, bit of pfaffing with blood tests but nearly all of us are on it, it's my "best friend" that way I am protected from stroke, given the option of stroke versus the tablets it's the tablets anyday, and for the rest of my life probably.

Absolutely nothing whatsoever to worry about with warfarin, tiny tiny side effects by percentage and there are alternatives if you have them.

Couple of other things, permanent AF?, I think you mean persistent, permament means they have tried everything to get you back into normal rhythm and nothing works. Without having a cardioversion, they obviously have not yet tried everything. I am in persistent (continuous) AF as well, and have had a failed cardioversion.

No re the water retention, do you mean idiopathic oedema?, If so then why did they cancel anything? it's relatively common and should not usually effect any other procedure they want to do with you, it's fairly benign although does flare up I understand.

Lastly have you seen a cardiologist or an EP, you need specialist advice on AF your GP is not the person to go to, except for day to day needs, all the instructions need to come from your cardio only.

I think you need some better advice than you appear to be getting, so I hope you have a good Cardiologist. And don't forget we are all sufferers here, so post any question you like. At 56 you should not be feeling as bad as this, so let's help you take back control of your condition...

Be well

Ian

[LittleAine29 in reply to Beancounter]

Thanks Ian, It has just ruined my birthday meal and I feel awful about it as it is the first time my friend has taken me out in ages ! I took a panic attack and ended up in another friend's house crying my eyes out. She has been where I am now and it took her 8 years to finally get sorted and on to an even keel again I only saw the AF nurse at the hospital, I havn't seen a cardiologist yet. X

[Hidden]

You have a very cautious GP it seems. I wonder why the Anti-Coagulation Clinic people aren't giving you your doses? My GP has nothing to do with it. That seems a long time to get to 1.9 to me !! But still, you're not far off getting into range.

Koll

[Mrspat in reply to Hidden]

Ease of access to warfarin clinics barely seems to get a mention. I also had mine monitored by the GP, within walking distance. The nearest clinic is 8 miles away and involves two buses if you don't have your own transport. I know someone in London who has to use taxis to get to the clinic because they are too immobile to use public transport and can't self-test.

[Hidden in reply to Mrspat]

I go to my GP surgery as well MP, they take the blood sample. But then the hospital (or couriers?) come and collect every day and take it back to the clinic at the hospital. Then the yellow card comes through telling me what dose I need and when my next blood test should be. I thought that's how everyone did it, maybe it's just a Shropshire thing?

Koll

[Mrspat in reply to Hidden]

Interesting Koll. It sounds as if you are giving venous blood samples every time rather than having a finger prick? At my GP's, if the practice nurse does the finger prick test, she calculates the dose and next test date with the aid of some computer software. If the health care assistant or phlebotomist does the test, the reading has to go to one of the doctors for a decision about dosage and next test. Someone from the surgery always rang me back later in the day. I live in Kent. The hospital van comes to the surgery to pick up other blood samples at lunch time but I never had a venous test in a year on warfarin.

[LittleAine29 in reply to Mrspat]

I live way up in the Scottish Higlands and I'm 26 miles from the Cardiac clinic in Inverness. I don't drive and am not fit for the bus so my friend has to take me there when nessasary. One of my GPs will try and send you to hospital at the drop of a hat ! Her nick name is Doctor panic even the clinics know her as this, asking if it was Doctor Panic who sent me there. I am told to take a hospital bag each time and it has been up and down the road so often that it knows it's own way home. The other doctors don't seem bothered and just try and put me back on beta blockers which don't agree with me I have had this AF 9 months now and still havn't had any helpful answers from the medical proffesion ! Sometimes I think I would be better treated if I went to the vet !

[Snootyfox in reply to LittleAine29]

Have you not seen a cardiologist in 9 months? Thats not good at all. Insist your GP refers you but if you can afford it go privately for our first consultation to get things moving (£150 or so). Steph

[rosyG]

You are nearly there!! It is best to increase slowly and you are over the initial phase now so your body is used to warfarin- you might find he raises it slightly again and you are in range

[LittleAine29 in reply to rosyG]

I have been as high as 3.4 INR but it came down again when I took less warfarin. My target is 2.5 INR which I was for a couple of weeks but it has all gone out of control again now !

[Mrspat in reply to LittleAine29]

Have you thought of asking for one of the alternatives to Warfarin, if suitable? They don't require testing and trips to clinics. Most of us who have switched are glad we did.

[LittleAine29]

Hi Mrspat, Thanks for your reply, I have never been offered an alternitive. I have been on it since last November. They offered me a cardio version for my AF and to have that done you have to be stable on the warfarin and have an INR of at least 2.5 for 4 weeks prior to the treatment which I wasn't I was also told to take beta blockers which really do not agree with me, I have tried 4 different ones with the same results each time. All the bad side effects but non of the good things they were supposed to do so the doctor took me off them. since then I have felt slightly better. They have cancelled the cardio version in any case as I have cronic water retention in my legs. X