Alternative to Warfarin...: Hi everyone... - Atrial Fibrillati...

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Alternative to Warfarin...

21 Replies

Hi everyone,now in ninth week on Warfarin and to be very honest it wasn't as difficult as expected...Didn't change my diet all and readings quite stable.A few side affects or so I believed to begin with but seems to have settled now...

The only down side is keeping the appointments and juggling my diary and work schedule to travel the 10 miles to the hospital, I cant let my clients down by changing there appointments....They have work commitments also...

Could any of you nice people out there please advise on an alternative...I am aware of the pros and cons and Warfarin having an antidote but as yet I am still self employed ...Well I will put it to you...What do you think...!!!! C

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21 Replies
tk11 profile image
tk11

Purchase a coaguchek xs self testing machine. I now have all the freedom but the diagnosing and support from my hospital. I love it!

BobD profile image
BobDVolunteer

Hi Caromia, eventually you will most likely be on 12 week appointments which will make things easier but you could buy you own Coagucheck machine, about £300 .Some patients seem to be able to get the strips on NHS as they are quite pricey but find the convenience of home checking to be worth it.

Bob

in reply toBobD

owch the thought of spending £300 of my hard earned money on this machine and the upkeep of the strips as I very much doubt getting them paid for on NHS here but I shall certainly look into it.Thank you Bob......C

Loquitir profile image
Loquitir in reply toBobD

Before moving to rivaroxaban I bought an INR testing machine and the GP prescribed the strips. I had to ring the hospital to give them results and they advised on dose with a 2/3 visits to the clinic a year.

The almost weekly visits for the INR test made the purchase of the machine look cheap.

Also your local pharmacy might be able to give you the details of the anticoag check scheme which enabled a user to pay in monthly instalments to manage the cost. Or look it up on google.

But I agree with Bob it was so much easier and convenient especially if your like me and will be in it for life.

Good luck

in reply toLoquitir

Thank you Loquitir...I feel as though I need to move on from Warfarin for the very reasons being that it is for life....As I get older the testing and the palaver will get more difficult...Maybe I should look at spending £300+ on a consultant who is willing to provide me with an independent unbiased opinion....I am taking on board everyone responses and opinions which is greatly appreciated,,,,,C

Loquitir profile image
Loquitir in reply to

Well I moved over from INR tested phenindione to rivaroxaban. I don't need to check INR anymore.

If your INR is problematic you might be able to get one of the new anticoagulant drugs not requiring the INR test.

In terms of accessing an EP Consultant, I personally think that's a good idea - my experience is that they will give you the facts and the risks, options and advice and you can decide the right way forward for you.

But in the end all anticoagulant medication is taken to offer varying degrees of protection from clotting so it's a subject that medical advice is a necessity.

Hi, tk11...I have thought of that option but as per usual I envisage obstacles. For instance ..How would I know how to adjust dosage accordingly also at the moment the yellow book is marked up and then I go to my GP who prescribes the Warfarin just enough for a couple of weeks...This complete procedure Hospital,GP and chemist takes up the whole day...Am I foreseeing problems here? It took me 12 months to have the courage to ask for and go on the blinkin stuff and now I am already complaining...

I will certainly take your advice and ask the nurse at the Warfarin clinic if this is an option for me and whether I would get there support....Thank you for your reply....Take care....C

tk11 profile image
tk11

Best £299 I ever spent BobD and my anticoag nurse liased with my surgery so I was sure I would get strips....hate being on Warfarin but this changed it all for me

meadfoot profile image
meadfoot

Hi Caromia,

If I was taking Warfarin I would definitely invest £300 in the self testing Coagcheck machine as it would ease the hassle of hospital/GP visit for INR tests and make it all less of a hassle. It would pay for itself eventually especially if you take into account travelling costs and work downtime.

Having said that, when told I needed anticoagulation (or more to the point I requested it - had been on aspirin like so many others and that with a CHASVasc score of 3 no less), I opted for one of the new novel anticoagulants, Rivaoxaban.

All the pros and cons were explained to me and I sought professional advice from a number of medics before embarking on it. So far so good 8 months in, no side effects. Had blood tests at three and six months (six monthly from now on). I worry about it as I would with warfarin or any of the other new anticoags but on balance I just pop the pill daily (same time of day every day, with food a must), and hope for the best but feel safer on it than not that's for sure.

Regards

Dee.

in reply tomeadfoot

Thank you Dee,Rivaoxaban is mentioned frequently...I need to start researching these anticoagulation drugs but its a minefield and what seems to be one mans meat is another mans poison...Regards.C

dedeottie profile image
dedeottie

Hi. Self testing has made my life so much easier. I don't adjust my own warfarin but when I ring in my reading the nurse tells me what to take. I have strips on prescription . One tube lasts 6 months if I test once a week. This way I am reassured that I am always in therapeutic range.x

Loquitir profile image
Loquitir

I developed a serious allergy on warfarin. The alternative I was prescribed was phenindione. Good luck.

MarkS profile image
MarkS

I agree with tk11, the best £300 I've ever spent. I get the strips free, which everyone should be able to do. I enter my readings online and get a revised dose back that evening.

However I tend to ignore that and self-adjust. I.e. if my readings trend towards 3 I reduce by 0.5mg and if they trend towards 2 I increase by the same.I travel quite a bit so I need to make my own calls. After a year or so of reporting you get the hang of the doseage.

I find warfarin makes very little difference to my life now. I do all the same things I would have done and don't worry about it.

Mark

Dodie117 profile image
Dodie117

I too recommend self monitoring. You will find it gives you much more freedom and peace of mind as you can do checks whenever you like. I do mine weekly and told to ring hospital if I go below 1.5 or over 4. No reason why you shouldn't get the strips on NHS. I do but had to argue for them. Good luck. Marie

Hi Marie,

I live in the North West and we are on a tight budget but if you don't ask you don't get...I will see my GP at the beginning of the weeks as see what his thoughts are on this...Take care,C

rosyG profile image
rosyG

My GP has said with cuts they now only will prescribe 12 strips a year. I have ordered extra strips with the Coaguchek machine and am waiting until stable enough to start self testing.

Hi Rosy,

My INR is not stable either after 9 weeks... Now on 8 mgs daily reading down to 1.8 this week...Nurse assured me that it will eventually stabilize....C

dedeottie profile image
dedeottie

I take 11 mg daily and am stable on that. My nurse told me that genetics play a part in how much warfarin your body can tolerate or process and that if I need 11mg a day it won't do me any harm.I think I am a little bit colder than before but as I've lost quite a lot of wieght (international) that could account for feeling cold more. Anyway I am just so glad to be protected from strokes that I would be prepared to put up with some minor inconveniences.

Hi Dedeottie...Thank you for your response...Having been prescribed medication from day one of having my AF an admitted to Critical Care unit... I am still trying to ascertain which of my many symptoms are PAF and which are due to medication...Just recently as two weeks ago a friend had a stroke devastating not only to her but friends,colleagues and family...This is a lady that spends her winters skying in France with no apparent health problems previous to the stroke.. I do count my blessings everyday and have nothing but praise and thanks to you Guys on this Forum who are continuing to educate me with regards to PAF... Like many others on this Forum I was left in the dark by the medical profession when diagnosed and told dismissively there was only a slightly marginally risk of a stroke,...Take care...C

dedeottie profile image
dedeottie

Hi Carolina. I agree the guys on here are fab. I actually don't know what I would have done without this forum for all sorts of reasons. Sometimes I need advise, sometimes comfort and friendship and sometimes I just need to scream and shout!good luck with everything.x

There is strenght in numbers and being with like minded people.......CX

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