Went for my third visit to the INR clinic today and am now at 1.2, having been 1.1 prior to taking warfarin and since. I told the nurse I was worried about the lack of stroke protection. She spoke with the dr. who said that I was protected even at this level. Is this right? If so, why did I need to take it in the first place? Also, the leaflet and directions on how to take Warfarin states that it is best to take 10 mcgs for 2 days and then reduce.
I am new to all this, having recently been diagnosed. Any advice/information gratefully accepted.
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Peddling
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I really don't understand these clinics today. When I started ten years ago I took 10mgs for two days and then had a test. . They then adjusted my dose back and forth for a few weeks till I got stable. Now they seem to creep up on it over months! Your target INR is between 2 and 3 so aim for 2.5. Less than 2 there is some protection but not as good as it should be so I disagree with what the doctor said.
At the Conference last year, partly because of a lot of correspondence I was involved with regarding INR testing, we had a presentation from an expert who explained how vague was the testing and how different laboratories could produce a range of results from the same sample so he suggested that we should be aiming for 2.5 to 3.5 in order to guarantee we were in range but current guidelines are still 2 to 3.. Sorry bit of a mammoth sentence that. Bottom line is that you are at the mercy of the clinic or your surgery but might I suggest that you put your concerns in writing and ask if they can't speed up the process by increasing the dose more. You might also ask if their medical negligence insurance will pay out were you to have a stroke or TIA whilst they were taking their time about it. I think if you are under your GP this might explain things as GPs in general seem to be scared of warfarin and quite often reluctant even to prescribe it.. Good luck but don't be put off and fight for what you know to be correct.
Thank you Bob, I disagree with the Dr too. I will follow your suggestion to put my concerns in writing. I am attending the clinic again on Tuesday next. My own GP will also make herself available if I am still in the doldrums. (The Dr. giving the Ok to the low reading has practice responsibility for the blood clinic... Don't know whether to laugh or cry!).
Thanks Bob for this it has also helped me because as you can see by my reply to Peddling I am currently going through a patch of low readings after being stable for some time. Although my clinic are very good and they ring me if my results are going awry they do seem to be doing what you have said and not upping my dosage for weeks. This is my 4th week when I have my next test of being 1.9 or below and they have only changed my dosage on two days of the week which hasn't done any good since the first week. I am going to do what you suggest and write and i will put it on here when I get a reply.
You don't say how long have you been taking Warfarin? My INR took some time to get going and I was also started on a low dose and worked upwards. My target, like everyone's I think (?) is 2.5, or a range of 2 - 3. I try and aim for the high side of 2.5 because that's what the real experts have suggested is best.
Some people find warfarin really easy and a minority of us don't. It's a very personal thing and it may take a long time to get the dose right for your lifestyle. I was assured that one does not have to be in the therapeutic range to have some protection, but the nearer you are to 2.5, the better.
Thanks Rellim, I have followed all the rules, no alcohol, very little caffeine, haven' had a green vegetable since diagnoses etc. but no result, at least,not where I need it.
Easier said than done, but I would certainly try not to worry about your situation as it won`t achieve anything. What I would most certainly do is ask your Doctor for a second opinion and make sure you get it. It is your right to request a second opinion and indeed you have a responsibility to yourself to ensure you are receiving the correct treatment, treatment that at least falls in line with the general recommendation by the various anti-coagulation bodies. Best of luck. James H.
In your position I'd be tempted to increase my dose by 20%, go for another blood test in 3 days and declare the increased dosage on the yellow form. But before cries of 'irresponsible' descend upon me, let me say emphatically that I couldn't possibly advise you to do that. Sometimes you just have to grab the bull by the horns though that's a very personal decision. However, an INR of 1.2 is no protection at all. The doctor is talking nonsense - see another one quickly. Acceptance of a low INR, because 'the clinic must know best', is dangerous. INRs should be in therapeutic range, not languishing down at 1.2.
Wow leelac, rock on! A few robust and radical solutions for me to savour. If it is still in it's lowly state on Tuesday (next appt.) I may push for a NOAC or do I mean NAOC. When I mentioned this to the nurse she told me if I did that, I would have difficulty in finding a surgeon prepared to operate on me, should the need arise. Bit scary that, and totally wrong.
I started on warfarin for 2yrs ago and it's been up and down all the time but I was given the promise by my GP that when I was getting lots of numbness and pins and needles in my limbs and he said there was no way I could have a stroke/TIA Whilst on warfarin. A couple of weeks ago the coagulation clinic asked me to go back to GP and ask about the new drugs as she felt I had a case to go on them and he would not discuss this suggestion . The following visit to the coagulation clinic I had symptoms of a TIA whilst she was taking my INR which was 2.7, she advised me to travel to the walk in clinic and get checked out, so I caught the bus to it and then was put in an Ambulance and sent to the stroke ward as I was having a TIA. I don't mean to scare you as everybody is different this is just part of my story of care or lack of. My top tip would be self pro-active in your own care and push for answers and solutions. Good luck x
Thank you so much, don't be concerned about scaring me - I am terrified anyway, but this forum has helped me so much over the past three weeks. It has widened my knowledge base and given me the confidence to confront ineffectual practice among other things.
I hope you are in a better position now and think you are amazing to catch a bus to a walk in clinic whilst in a TIA. Take care
Make sure you keep of the dark leaf veg and defo do not have cranberies they are an natural anti coag. I was started on 10mg and then tested back in the 90's and then the AC nurse wanted a slower approach to get to target She said it was in her opinion was better as it could be dangerous if you have an undiagnosed ulcer etc. The jury is still out it seems.
remember that when you do start to live a life again it will affect it so do not let it rule you as they can get on top of it, it is sudden changes that make it mess up I have found.
I have a chad score of zero so not been on anticoagulant but I was told I would have to go on warfarin for six weeks prior to my cryo ablation. I was rung up a week ago and told to start warfarin immediately as my ablation would be in less than four weeks. My doctor has been very helpful in trying to get me within range as quickly as possible and I am now at 1.9. He started with a loading dose of 10 and I'm now on six.
That's what I think should have happened with me. I shall push for a much higher, reducing dosage. Well done for the 1.9 and good luck with your target and the cryo ablation. Don't actually know what that is, the cryo bit...will look it up.
Hey Kakapo, you should never have been without anticoagulation and now you're on warfarin, don't ever come off. Forget the CHADS scores, a fanciful matrix that medics use to assess your stroke risk. It ignores the fact that you've got AF and that, in itself, is a big enough risk! Why would you want to wait until you have a stroke so that the CHADS score gets high enough for you to be prescribed anticoags to prevent stroke? Crazy eh? Especially as many people only get one shot at a stroke - they're not around for the second one! Good luck with the cryo but afterwards, don't let them stop prescribing and keep taking the tablets. They daren't refuse you but you've sometimes got to be a bit pushy....
I have always been told at my Warfarin clinic from day one that the best protective dosage was when your readings are between 2 and 3 and thats what my clinic always tries to maintain. I have little blips for example when i have been unwell or had to take antibiotics etc which stops the warfarin doing its job and my readings will drop to 1.7-1.8 until my dosage is changed to bring it back up. Im currently having my dosage changed every week because for some unknown reason my readings have dropped for the last 3 weeks. Each week I have had a small increase but still only reading 1.9 so I am awaiting this weeks test with bated breath.
Have you considered getting your own machine and doing some self managing. The machine costs £299 but you can get the strips on prescription- you might have to fight for them. You could then do a test and increase your own dose if too low. This is what I do and it helps keep me in range and gives peace of mind. I realise that this is not always affordable but if it is I woul;d recommend it.
That is very helpful and I will certainly give it consideration. I like the fact that you have control of your own situation. Where can I purchase one?
Look under coaguchek.com. you can order from them direct. Talk to your gp about prescribing test strips. If he says no you could fight it but if you can afford it and want to buy them they cost about £70 for 24. If you do a weekly test then this will last almost 6 months so although not cheap it is worth it if you have a bit of spare cash! Good luck
I went on to warfarin over last Xmas. It took my GP 2 months to get me to an INR of 2.5. I was frustrated with progress so went to see him and told him I wanted the dose increasing more quickly. He said he was following a protocol! My INR is now steady at 2.4/2.5. I eat green veg without a problem, although aim to keep a steady intake. I now find warfarin dead easy - the main problem is to remember to take the tablets each day!
That is reassuring, although I doubt my nerves could tolerate a two month climb to the required level. It's good to know that you are back to 'normal' diet. I am so looking forward to helpings of spinach and kale...in moderation, of course!
Oh.... Hot goats cheese and spinach salad, spinach dhal, eggs florentine, tortilla with garlic and spinach, or just plain lightly braised spinach in butter with nutmeg.....
Wow I'm hungry...................
The only thing popeye had wrong was the canned spinach, yuck, but fresh....... Yum iddy yum yum
When first put on anti-coagulant I said Warfarin-no way! I was offered Dabigatran which acts in a different way to warfarin and doesn't require monitoring. I have had no problems whatever with it. I apologised to my GP for insisting on the more expensive option, and she replied that warfarin would probably be phased out and consequently the alternatives come down in price.
Thank you, that is very helpful. I have followed Bob's advice and put my concerns in writing. My anxiety is heightened by experiencing my partner's massive stroke/s six years ago, following Abfib diagnoses. He was given aspirin....! So I am achingly aware of the danger of being under medicated. Frankly I don't care what I take, so long as I am adequately protected. I would prefer a Noac if I'm honest, but that has more to do with lifestyle and not wanting to be darting off to a warfarin clinic every time I change my routine. I am at the clinic next Tuesday and not expecting any dramatic increase, or any increase at all really. Hopefully, I shall get a more robust response. Your GP sounds like one of the enlightened few. Lucky you.
I found I could not be stabilised on Warfarin, with very low readings nearly every blood check. I visited and discussed with my GP after reading about if you can't be stabilised for I believe it is 60% of the time, then there is argument for one of the other anti coagulants available (Dabigatran) I kept a medical card will all my readings and this was evidence enough for my doc, although with the higher cost of Dabigatran it still had to go to the practice for final confirmation. I'm not on 2 x 150mg of Dabigatran and no warfarin. My warfarin levels were of similar nature to you, and I felt that they did not offer me any real protection, and although you have no real knowledge if the Dabigatran is offering full protection I somewhat feel more reassured. Hope this helps.
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