CHANGING FROM WARFARIN

[nemisis2]

Hi Everyone, once again thanks to all of you for all your helpful and informative replies. I have spoken with my doctor this morning and she was very helpful and said that if I am comfortable with Warfarin I should stay on it. It seems that the hospital I call with my INR us stopping doing it soon and this was the main reason they were asking if people would change.

To Bobd. I think it was you that said you eat what you like, do you check your INR and eat according to that, I was told by the hospital when I got my machine to only test when I had to call them with the numbers but I always did test inbetween, but I hardly eat any green veg which I do miss, Thanks again, Pauline

[BobD Volunteer]

Pauline the secret is to eat what you like and make your dose fit your diet. The more you try and duck and dive the more variable it becomes. One of our members (MarkS) takes vit K tablets to increase his Vit K levels so that any dietary variations are percentage wise very low. OK you need to take more warfarin but that is no problem. It isn't what you take but the results that matter. I know people taking 14 or more. For example I generally take between 4 and 5 mg but mostly 4.5mg but should I eat a lot of parsley or similarly high in Vit K I may add 1/2 for a night. I currently do not self test but my monthly surgery coagucheck results are usually well within limits. I have been as infrequently as 12 weeks before now. I hope to self test eventually as my late brother in law who died last month had just bought his own machine which my sister has promised me but since they live in France it may be a while before I can get it. The problem with NHS is that the computer does not recognise trends so will continue telling you to take X whilst your INR has been falling or rising steadily. Once I stopped doing as I was told and adjusted my own dose my INR settled . 16 years taught me that.

One thing I learned at conference a few years ago is that the INR scale is quiet rough and ready (this from the UK expert on INR testing) and that we should not worry so long as we are above two and below five.

[nemisis2 in reply to BobD]

Hi Bob, Thanks for that, if you do get a machine how often would you test do you think, or would it be depending on what food you eat. When I told my hospital I had got my own machine they didn't think I should test regularly which didn't make any sense to me. They also said I should get the test sticks on prescription, they cost £72 for 24, but I was told by the surgery that they didn't do that. Take care, Pauline

[BobD Volunteer in reply to nemisis2]

I think I would only test once a month unless I found I was drifting too much in which case weekly. Of course if there waas a good reason to test more often such as new medication then that would be exception. For example I take propafanone as PIP which seems to increase INR so I found that taking it full time shot me up t INR 3.3 in about a week. Antibiotiics can also affect INR .

Regarding the strips, self testing is approved by NICE so you may need to bang some desks and see what your local CCG say. I know there are some parts of the country where there is resistance but check NICE website on the subject and go in with chapter and verse prepared to fight..

[irene75359]

Nemisis, I followed a post by MarkS a few years ago when I started self-testing. I looked up all the studies and they verified what he said, that vitamin K2 helps keep INR stable. I have taken it ever since (the practice nurse was horrified) but the doctor was fine about it. I really don't think about what I eat, ever. Any swings in my INR is almost always due to illness. I test every 10 - 14 days (the nurse thought that was too often) but I feel more comfortable with that. I also self adjust by very small amounts 1 mg (once only) if I see my INR is on a very slight downward trajectory over many weeks.

If you do take K2, it also aids the correct absorption of vitamin D3.

[Auriculaire in reply to irene75359]

Vitamin K2 is very important. It helps ensure that calcium goes into the places it belongs ie bones and teeth and not into places it does damage ie artery walls and breast tissue. It is very important to take it if taking vit D and calcium supplements or if their is a large dairy intake. I thought that K1 found in veg was more involved with clotting. Have you found out in your research why K2 stabilises Warfarin?

[irene75359 in reply to Auriculaire]

eurekalert.org/pub_releases...

insights.ovid.com/crossref?...

journals.lww.com/co-hematol...

healthline.com/health-news/...

When I saw the Mark's post, I ordered K2, and have been in range ever since (except when I am ill).

[Auriculaire in reply to irene75359]

Thanks!

[nemisis2 in reply to irene75359]

Hi, Thats interesting, If you have followed my post you will know that I missed my warfarin on Tuesday and I am now trying to get back into range, which is proving to be very slow although I am back on my normal dose. I normally test every ten days but my hospital doesn't seem happy with this, no idea why, I would have thought it best to keep a check as often as possible. Pauline

[irene75359 in reply to nemisis2]

No, the nurse at my GP practice wasn't happy at me testing so frequently either, she said it was unnecessary. I disagree.

[MarkS in reply to irene75359]

Agreed. I test every 1 to 2 weeks. The practice are happy enough that I reorder 26 test strips every 9m or so. I'm very pleased the K2 has been so successful for you.

[MazzyB]

I too have been asked to change but don’t know what the drug is called it’s a new one! But after going for my INR this morning I would definitely welcome not going back! Their really annoying are some of the staff! Hope you get sorted.

[Gilli54]

This is a very interesting thread. I self test. My GP is happy to prescribe strips and lancets. I eat whatever vegetables I fancy but not any to excess. I do avoid cranberry. But I eat everything else. My INR is pretty stable but can suddenly fall. I monitored it more regularly and got into trouble. I just wanted to see how it was behaving day to day. I thought that was the idea of self testing. Anyway. I had a low calcium result in blood tests last year and am taking supplements. I only take half the dose every other day. I have also improved my diet and get up earlier so I can eat three appropriate meals instead of two.

But I am worried about the calcium affecting the wrong parts of my body. So are people saying that K2 Is safe to take with warfarin. I also take the usual culprits of bisoprolol and flecainide. And also Levothyroxin as I have no thyroid. It sounds like it would be good to take with the supplements.