Warfarin

Well, some good news, I took the cutting from the paper (mentioned in a previous post on the forum) to the doctor on Friday and waved it at him, and he's agreed to put me on warfarin rather than aspirin. I have to say I'm rather relieved. Got a blood test on Thursday and I guess when the results are back the week after I will be on warfarin. I know my Chads2vasc score is only 1 but nevertheless, as one of my cousins had several TIAs at my age (56) it is a big weight off my mind. I felt it was really helpful to have the newspaper article rather than try to argue myself for warfarin...

[Hidden]

That's great eatsalottie. Brilliant to have this forum, so much comes out of it.

[Hidden in reply to Hidden]

That's very true. I really appreciate it so much...

[BobD Volunteer]

I am so pleased that this has happened. Well dpne!

BobD

[Hidden in reply to BobD]

Thanks Bob! Definitely good news

[jeanjeannie50]

Hi Eatsalottie - Thank goodness you managed, at last, to get put onto warfarin. Great news.

[Hidden in reply to jeanjeannie50]

Hi JeanJeannie - yes, I'm relieved, I can tell you. Feels like a reprieve.

[dedeottie]

Well done. It's great that there are people on this site who know their stuff and can help us through these things. My heartfelt thanks to all of you. X

[Hidden in reply to dedeottie]

Yes, there are some wonderful people on this site - heck, you all are. I owe you so much, I can't thank you enough.

[trouble]

In today's Daily Mail there is an article written by their Science corespondent, Fiona MacRae. The head line is "Cheap drugs put heart rhythum patients at risk." It explains that some of the GP's surveyed felt under pressure to prescribe cheap drugs and others lacked confidence in prescribing the newer drugs and that others prefer prescribing aspirin rather than warfarin. The Stroke Assoc's view is that aspirin does not act as an anti coagulant and is a 'tragedy' if prescribed for AF.

[Hidden in reply to trouble]

I'm sure that's right, Trouble. I know our doctor said that the Betsi Cadwaladr Health Board (which covers us in North Wales) does not allow prescription of the NOACS, though I'm sure someone on the forum from our area was on them because of an adverse reaction to warfarin. It is a tragedy, if doctors are raising the risk of bleeding without any reduction in the risk of stroke, for sure...

[jennydog in reply to Hidden]

I was started on warfarin in early September and am amazed how trouble - free it has been. I had an INR check last week. It was 2.9 so I don't need to see the nurse again for 6 weeks. I do have some big bruises to show and the little blue tablets taste awful but the confidence it gives is wonderful. Good luck with it.

-

[Hidden in reply to jennydog]

My fingers are tightly crossed... I have a diabetic dog so there will be no end of testing going on in our house! Blue tablets, eh - they even sound as if they would taste awful (makes mental note to coat them in honey). I'm very glad to hear you're doing so well and thank you for the good wishes

[gerryatriq]

I have been taking warfarin for 13 years for my permanent AF. INR is usually failry constant and in range 2-3.

Of course the benefits of warfain for AF patients are well known, however, one thing that I have always been aware of is that Vitamin K, reduces the effect of warfain and that is why people are usually told to be careful with Vita K, like green veggies etc. Over last couple of years I noticed various back issues which surprised me, as a consequence I had a bone density scan done (DEXA), the results were a bit disturbing with me being diagnosed as having osteopenia, the for runner of osteoporosis, particularly in the spine.

I am now reading about this issue and it seems clear to me at least that the possible reduction in Vit K as part of daily diet might have caused this, in addition and again surprisingly, I have had 2 stents fitted for blocked arteries, again with possible causation of calcium being removed from bones and ending up in the arteries.

Would anyone comment on my post, esp regarding taking a Vitamin K supplement to keep a level vit K, and adjustment to warfarin as required to keep in range 2-3.

[Hidden in reply to gerryatriq]

Goodness... It just goes to prove that there are all sorts of potential issues down the line. I would like to know as well, thanks very much indeed for sharing, Gerryatriq

[dedeottie]

I was told to eat whatever vit k I usually ate and my warfarin dose would be adjusted accordingly. So I did and am consequently am on a relatively high dose of wArfarin to keep between 2and 3. My dose is 10 mg a day but I'm told this is ok. I have only been on warfarin for 2 years, have eaten lots of green veg but at a recent bone scan was found to have osteoporosis in my spine. I'm 57. I couldnt believe it as I have also been really active all my life. In my case it looks as though it is hereditary. However if I was you I would ask the nurse at the clinic to help you increase your vitimin k intake and if needed she can then increase your warfarin. It's certainly a balancing act isn't it? Good luck.

[Hidden in reply to dedeottie]

It does sound like a real balancing act... I certainly will ask, thanks dedeottie!

[gerryatriq]

yes i think its exactly that. Of course both docs and anti coag nurses in UK tend not be interested in these possible long term issues, they are paid t keep you in range 2-3, hence ending up with things like 6mg for 4 days and 5 mg for 3 days. I spend winter in the Algarve, so should get a lot of natural Vit D, but in Portugal there is only a 5mg tablet (not 1, 3 and 5) and as this tab is part cut into 4 you can get near enough with just 1 pill. WOnder how much extra it costs NHS to buy 3 tablets instead on just 1 !!!!!!????? And of course when dose changes, you can suddenly need more 1s

than you have hence a new prescription,,,,,crazy

[Hidden in reply to gerryatriq]

Yes it is crazy, isn't it? It also sounds terribly fiddly... Best of luck cutting tablets into four, I've tried that for the dogs and have never managed to get an even cut yet!

[Dodie117]

I too told about green veg and interaction with bit k but also told to eat my normal amount and the warfarin was adjusted to my diet - not adjusting diet to suit warfarin. Marie

[Hidden in reply to Dodie117]

That makes a lot of sense - thanks Marie. I reckon I'll be okay apart from at Christmas when I may have to be slightly careful with the sprouts!

[abihel]

I've been on Wafrin since being diagnosed with persistent AF in early September. I have recently had a cadioversion which up to now seems to have been successful. I am going to see my consultant soon and was wondering if I will be taken off the medication,,I take 6mg wafrin and 5mg bisoprolo daily. What is everyones elses thoughts about coming off the drugs?

[Hidden in reply to abihel]

Hi Abihel... It's great to hear your cardioversion has been successful. I'm sure at some point they will take you off the drugs, though I have no idea what the usual system is, I'm hoping people will let us know.

Lis

[gerryatriq]

hi

for 8 years i was on sotalol @160mg/day along with warfarin, but never stopped af which is permanent 24/7, was told that it was keeping HR at sensible rate at about 60-75, but did nothing for AF. Changed to bisoprolol at 2.5mg, lower dose than you, but never noticed any difference in either of them. Only drug that ever worked was the first drug i was put on which was Amiodarone at 200mg/day, after loading dose for 6 days, it took about a further 2 weeks and one day woke up in NSR,,,,,best feeling I have ever experienced bar none !!!!!

Lasted in NSR for over a year, then had a breakout and some Doc stopped the amio and put me on to sotalol, never been in NSR again.

I have had 3 cardioversions but best one lasted 4 days.

[Hidden in reply to gerryatriq]

Sorry to hear that... What a pity you can't be on the Amiodarone if it suits you, is there some reason why doctors don't like it, I wonder...

[jeanjeannie50 in reply to gerryatriq]

Hi Gerry - I agree with you. I'm on amiodarone and although I'm aware of the side effects I've never felt so well. When I had a breakthrough of paroxysmal AF I would just take an extra one and that usually worked. Had a cardioversion last week, so still on it for a while but hope to come off them if all well. Could you talk to your GP like you have to us on here and ask to go back on it.

Jean

[gerryatriq]

yes it has long term issues for some people,namely a lung condition, sensitivity to sunlight, both skin and eyes, and possible thyroid problems as its a drug with loads of Iodine, and is a pretty invasive drug that takes a long time to get out of system (up to 6 months), but as you say it did work for me. I think that is used in older patients, where maybe risks of contradictions are not so much of an issue if it works. I have heard it said that due to breakout issues with it, betablockers are preferred cause there are fewer visits to A & E.........

[Hidden in reply to gerryatriq]

Oh goodness... it does sound like a double-edged sword, doesn't it? I keep hoping that as more research is done, they will find ways to counter the bad effects, and even perhaps create better drugs without them. One day!

[jeanjeannie50 in reply to gerryatriq]

I know someone who was on amiodarone for 10 years and he suffered no side effects - other than a blue tinge to his skin as he didn't know that he had to keep out of the sun.

[gerryatriq]

hi yes they have done, its called Dronedarone. It was approved by NICE in Uk but only in very specific situations of AF, It does not have the same Iodine in it, and so fewer side effects, but no good for permanent AF.

AF gets more difficult to cure the longer someone has it, even ablation is out of the question for me as I have been in perm AF for years. So it is imperative that all people and GPs check pulse at every opportunity, mine crept up on me very slowly such that i didnt notice it until it was well established. All I knew was that I seemed to get out of breath, but at age 50ish I assumed it was all part of slowing down. GP at the time only ever checked BP and never pulse !!!!!

I would hope that it would become a standard GP visit practice to do that now, it only takes a few seconds to diagnose and its FREE !!!!!!!!!!!!!1

[Hidden in reply to gerryatriq]

That's an important message, sorry you have permanent AF, I hope it doesn't hold you back too much. I believe it's AF awareness week this week, so I put a message on my Facebook page for people to check their pulse, I just hope one or two do. Dronedarone sounds better, I'm allergic to iodine so Amiodarone would never be viable anyway...

[gerryatriq]

Yes when I was put onto Amiodarone I was living in Portugal at the time, in fact it was there it was diagnosed for the first time, a doc actually checked my pulse, and asked me how long i had been in AF. I had no idea what she was talking about, but within 5 mins they had me on a drip, and this was just a tiny health centre, not a hospital, all a bit scary, I had to stay there until they felt I was OK to be let out (bout 6 hours.) I found out later that it was amiodarone they have dripped me with.

Couple days later I saw a cardiologist, and he prescribed Amiodarone pill form. But he did do a full blood count before starting, so i still have the records showing my thyroid was OK before starting A.

Like your friend Jeanie, the only issue I had while on it was sun sensitivity, so the Algarve was not the best place to be !!! However while my skin tingled more than normal, I did go a great shade of brown and a good pair of sunglasses soughted out the glare problem.

Had thyroid checked whilst taking A, but no problems. Was on it for over a year with no real probs and even if there had been the experience of a normal rythym was amazing for me.

Odd thing was was that after it was stopped in UK, in a hospital, they took no bloods and just took me off it and started sotalol immediately, same day. About 4 months later, i started to loose weight very quickly and muscles were always on fire (it was winter), visit to GP did nothing initially, but after a few weeks a blood test revealed that the thyroid was going crazy, so then another set of pills to reduce that activity. Elected at the end not to have thyroid removed (that was the suggestion by the Endo) and a year later it had settled down, with no further issues.

SO there is another experience. Always get bloods checked BEFORE starting a new powerful drug, and I found out since that my thyroid should have been checked before coming off it !! But it wasnt.

[Hidden in reply to gerryatriq]

It sounds like they have things a lot better sorted out in the Algarve than in the UK! How fantastic to have such a good response straight away at a small health centre. And what a pity that they couldn't give you that great service back in the UK

[gerryatriq]

hi

I gotta add to that that I did not actually visit the small health centre with anything to do with my heart !! But during their questioning and feeling pulse while we talked this came out !!!!!!

Then the **** hit the fan, for me at least. But I must admit that it was some sort of strange relief in that I had now a reason as to why I had been feeling so tired for a couple of years in UK.

It seems from my own experience it should become a normal part of a GP visit, for any reason, for pulse taking.

It is so well known that to catch AF as early as possible gives the best chance of a quick and easy, relatively cheap cure with Cardioversion.

I obviously cant say what happens in the UK today, but with the resources of the NHS this should be so easy

[Hidden in reply to gerryatriq]

My goodness... Yes, I bet it did hit the fan! I am always amazed that some people don't know they have AF because mine is so rowdy, it's like having a crowd of football hooligans in my poor old chest.

I absolutely agree, all GPs should check pulses as a matter of routine, it would make so much difference to so many people. It should be easy, shouldn't it? We can dream.