no anticoagulation

[Musetta]

Hi All,

Just a a question - I'm curious - are there any long term afibbers out there not on any anti coagulants? If so, how long have you been an afibber?

Cheers,

Musetta

[Bryonny]

My EP consultant thought I may have been in AF for many years before it was diagnosed - I am just relieved that I never had a stroke during this time as everything I have learnt from communication on this website is how important being properly anticoagulated is if you are diagnosed withAF. Although my CHAD score was low, with the changes in the structure of my heart, diagnosed following MRI and other tests, my EP Consultant recommended Rivaroxaban just over a year ago, I have taken this medication without any problems and my GP has been happy to prescribe.

The AF Association has information on anticoagulation. hope this was helpful.

[Musetta in reply to Bryonny]

Thanks Bryonny - very helpful - I shall add this to my arsenal of info! I'm in my sixties and diagnosed with AF couple of years ago ( low CHAD score - 1) and have had infrequent short 5-10 min episodes in that time. Still not convinced if it's necessary for me to be on Apixaban (similar to Rivaroxaban) at this stage of my "embuggerance" as Terry Prachett -RIP - would have called this cruddy condition!

Cheers,

Musetta

[nigelfarruca]

AF for a minimum of 20 years with no anticoagulant. Just started Apixaban in the last 3 months as I have safety reached 63 years old.

[genorm]

I was told (glibly?) by my cardiologist that my score of 1 was ok, as I wasn't 90. I am way more worried about a stroke than my ectopic episodes. It seems that depending on where you live, the tests and treatment vary hugely.

[Hidden]

Hi Musetta,Diagnosed October 2012 but also got Hiatus Hernia and Duerdenal ulcers so advised not to take any anticoags or even aspirin because they could damage the stomach lining.

[Bev999]

I've had bit of issue re. Anti coagulation, firstly because INR was continually all over the place putting me at risk of serious bleeds. Secondly, I've a kidney disease with bleeding into very huge polycystic kidneys - risk of trauma and finding bleeding into cysts anyway after MRI scan. Debate between competing risks with cardiology and nephrology.

Anyway, 3rd ablation will only go ahead if agree to going back on Warfarin for 6 months which I've agreed to.

Problem for me with newer anticoagulants is no antidote if had kidney or bleed such as brain aneurysm (another risk factor with my polycystic kidney disease!). It's sure not simple going with various risks with equally potentially traumatic outcomes!

Bev

[EngMac]

I have AF symptoms that come and go. I was put on anticoagulants for a bit but I am not on any now. I felt terrible on them and do not when I am off them. I have not taken them for a year and one half. I also do not take AF drugs. My chad scores say I may not need anticoagulants. I also do not take AF drugs. I have researched other natural anticoagulant substitutes but these are a crap shoot so one does not know for sure. Anticoagulants can cause negative consequences for some people and unfortunately the new ones are new; so the long term health impact is still to be determined. A person's overall health issues have to be considered. Sometimes people are taking a cocktail of drugs, all of which likely interact positively or negatively, so I think it is difficult for doctors to know what the total long term impact will be. Most people want anticoagulants since they are recommended by the medical community based on the majority of current studies. You can email me if you want to know the research I have done on natural substitutes that "might" be effective. Drug companies do not make money on these so the studies are not as plentiful. Everyone needs to decide for themselves, I guess, and I must emphasize that my approach is not recommended by the medical community.

[Musetta in reply to EngMac]

Hi EngMac, Thanks for your comprehensive reply I would like to e-mail you to find out what your research on natural substitutes has been. I'm fully aware that the medical fraternity does not recommend natural substitutes for most medical conditions particularly when it comes to anticoags. I guess that's understandable they do not want be held responsible for any negative or for that matter catastrophic outcomes. However, that does not mean we can't learn or be informed of other forms of treatment. So yes - I am very interested in what you have found out.

How do we go about exchanging e-mail addresses? I'm not sure how to go about that one.

Cheers,

Musetta

[Hidden]

First diagnosed Lone PAF 2008, Chads score 0, stomach did not respond well to anti coagulants when I had a DVT back 14 yrs, so no anticoags yet.

[Musetta in reply to Hidden]

Thanks for your reply OW - I guess with a 0 CHAD score - and depending on your age - I guess chances of a stroke are probably the same as folks in sinus (normal/regular) rhythm?

Cheers,

Musetta

[SuzieA]

I was on warfarin for about 7 months, 2 yrs ago but unfortunately had 3 brain bleeds so had to come of it. Had ablation last December. I do worry at times about not being anticoagulated but what can I do. I mentioned it to EP at follow up appointment but he wasn't particularly helpful just said 'ah you've had bleeds, mmm it's up to you'. So I don't take them, would love to find any 'natural' stuff that would help but haven't up to present.

[Rellim296 in reply to SuzieA]

At least you know where you stand. SuzieA. I have no more than a feeling that I am harming myself by being anticoagulated. I am convinced (and I'm probably not right) that something will go horribly wrong and they will say, with hindsight, that perhaps, for me, warfarin was not a good idea. I am frightened of it and more so of the new anrticoagulants. I don't go out walking alone in remote areas any more.

I had heart rhythm issues for 20 years and AF for two and a half fairly happy years - 18 months of them after my 65th birthday - before I took warfarin and I feel it now rules and blights my life.

[cat55 in reply to Rellim296]

Hi Rellim, I can echo your sentiments completely. I have not felt well since starting warfarin last July. I feel it has ignited what was controlled irritable bowel,I get aches and pains in my shins and my head and ,thinning hair and I feel generally not as well as before. I chose warfarin above NOAC s as it was tried and tested and has an antidote. I don't really know what to do but keep thinking i will just stop taking an anti coagulant as my episodes are far and few between. I score 1 for hypertension (well controlled) and 1 for being female. I am 59. I am however terrified of having a stroke but equally as terrified of a brain bleed. I have had PAF for 14 years and my GP only said I should take warfarin a couple of years ago. I just wish someone could evaluate the efficacy of natural foods that have anti coagulant properties. Sorry about the moan but am fed up of watching diet,( I do have to watch it as I really don't want to take any more warfain than I do) apologising at work for taking time out of work for blood test etc etc and have only once hit 2.4 in eight months. Moan over(for now) Best wishes to you. Kath

[Rellim296 in reply to cat55]

I'm sorry you feel so bad about it, Kath, but glad I'm not on my own. People who get on with warfarin and like taking it are lucky. It hasn't made me feel unwell, but it does seriously interfere with my sense of well being - for a variety of reasons which include some of the ones you mention. I feel completely out of step and get told I worry too much and have a bad attitude. I dare not give it up though.

[Musetta in reply to SuzieA]

I think if I had an EP that treated my 3 brain bleeds so glibly - I'd be concerned and and look for another EP! All the best with your search for natural remedies. EngMac - see reply above - has some research info on natural substitutes.

Cheers,

Musetta

[steve60]

Been in permanent Afib for nearly 2 years, told will need anti coags when I hit 65 or if my chads2 score moves to 1 sooner.

[Musetta in reply to steve60]

Thanks for the reply steve60 - keep on working on those CHAD scores -

Cheers,

Musetta

[PeterWh]

Steve. As soon as I was diagnosed with AF (and my doctor was not sure if I was classified as persistent or not - 3 ECGs in four days had shown AFib) she said that I had to go onto anticoagulation despite a 0 CHADs score. She did not want to prescribe there and then because she wanted the consultant EP to decide which of the NOACs was best in my case). Less than a week later I was put on Apixaban (switched to warfarin for a catheter ablation). Also told that even when I am no longer in AFib (probably after 2 CAs) for an absolute minimum of three months it could be reviewed but that I will probably be on anticoagulation for life.

From whet I have found out, especially on this site, if I were you I would insist on having anticoagulation. It was explained to me that if you are in permanent or persistent AF you are a much higher risk than someone who gets off AFs and they in turn are a much higher risk than a normal person.

[steve60 in reply to PeterWh]

I'm quite surprised to hear that, I am assuming that you are under 60 and have no other heart condition except for Afib, that a GP would prescribe an anti coagulant on that basis.

[PeterWh in reply to PeterWh]

Steve. I was just 60 at that point. It was explained to me (not at the initial assessment) and I have read that because of the fact that the atria does not expel all the blood there is a chance that clots will form in part of the atria. There are various other posts on here regarding anticoagulation and the importance of having it. This is just one of a number.

healthunlocked.com/afassoci....

[pogven]

Hi Musetta. I am a 61 year old woman, diagnosed with PAF 8 years ago. I was put on daily aspirin 75mg back then, along with a statin, bisoprolol (now up to 7.5mg) and losartan potassium.I'm still taking aspirin, even though I know it's not considered a decent anti-coagulation against the stroke risk. (My CHAD score is 1)

My problem has been (possibly) having a higher than acceptable bleed risk. 15 years ago I suffered a large rectal haemhorrage,requiring a blood transfusion. Tests revealed it to have been due to diverticular disease - a particularly unlucky occurrence which fortunately hasn't been repeated since.

2 years ago, my GP decided to change the SSRI (anti-depressant) I had been on for a long time to a different one. I went from previously experiencing 1 to 3 episodes of AF a year, to having 13 in the space of 6 weeks - while adjusting to this new medication.

During this time, the dreaded word 'Warfarin' was spoken of by the GP. My mindset was utterly fixed on having had that bleed previously and there was no way I wanted to put myself (as I saw it) at risk of another such bleed, when possibly out in the back of beyond in our campervan.

However, in these last 2 years, I am coming round to the idea that, given this Hobson's choice, I would least want to have a stroke than a bleed. My mother had a bad stroke 3 weeks after having a TIA, at age 65. She managed, with help, to live an independent(ish)

life with great disability for 11 years. Prior to the stroke, she was taking a betablocker, aspirin, and other stuff for CVD and angina, but she was not on anti-coagulation.

I SO do not want this for myself or husband, if it can possibly be avoided, so I am soon going to be starting on a NOAC.

And when I think about it, I have been taking aspirin all these years and nothing untoward has happened bleed-wise, so I have no real reason to suppose it will on AC.

I am choosing NOAC's as I want to be sure of having a constant level of anticoagulation with no varying high level which could make a bleed more likely, or more difficult to stop.

I understand an antidote is likely to be available quite soon, so, in the meantime, I shall be careful around knives etc, buy some Celox for emergencies, and take my chances.

Just another rotten dilemma dished out to us AFibbers of which the rest of the population is probably totally unaware.

However, better to be living in these times when there are actually things (albeit that give us dilemmas) that can actually help.

Are you in the process of weighing up the pros and cons Musetta?

Best wishes

Helen

[Musetta in reply to pogven]

Hi Helen, Thank you also for your comprehensive reply

As you've probably read in my replies to others regarding my query - I'm in my sixties and was diagnosed with AF a couple of years ago - since that time I've had a few short runs (maybe 6) of AF episodes. (duration - no longer than 10 mins and as short as 1-2 minutes) As I've mentioned in previous replies, these episodes, I've been told by medicos will probably increase with age - both in intensity and duration. I'm on Diltiazem to keep the resting pulse at a regular 60-64 bpm. So yes I'm weighing up the pros and cons for anti- coags. I would like to see some stats for antidotes for NOAC - I believe at present there are none.

Cheers,

Musetta

[farmerwalt]

I wonder why the "magic age" of 65. I had TIA's when I was in my late 30's, 40's and 50's and would probably have had a score of 0 since my AF was not diagnosed until I was 57, just after my last TIA. That was 15 years ago and been on warfarin since then, with no problems related to the warfarin.

Walter.