ANTICOAGULANTS UNDER 65

[Tomred]

Hi everyone , hope you are all ticking regular, its great when we are, so, on to my question, following from another post regarding anti- coagulants and chads score of 0 for under 65 year olds in PAF , but, has anyone with above criteria suffered a stroke, horrible question, sorry to ask this ,but it may help settle or unsettle minds in this position.

[wilsond]

I was 53,with a CHADs score of 1. When I asked my GP if I should be on anticoagulants after a recent diagnosis of AF,he laughed.Yup.

Then said, you only score 1 as you are female,we don't anticoagulate our patients until at least 2

With a strong family history on the female line of AF and death by stroke,I was uneasy .

4 months later I had a TIA when I was visiting my aunt in Boston,Lincolnshire.

The hospital there were very prompt at getting me on Apixaban,and a whack of aspirin for a few days.No ill effects thankfully

So,in my opinion,if you have AF don't mess about worrying about AC,it could save your life or the half life of a stroke victim.

[55zuzanka61 in reply to wilsond]

cannot agree more

Hallelujah

Jerryczech

[mjames1]

Stroke risk has to be compared to bleed risk. There is no free lunch here. That is why AC's are not recommended for everyone. If you don't think the CHADs score fully reflects your stroke/bleed risk, then discuss why with your doctor. Asking for stroke anecdotals (or bleed anecdotals for that matter) is an unscientific way to make a decision.

Jim

[CDreamer]

I had a TIA aged 62 after coming off anticoagulants following no AF for 12months after an ablation. I had pressured my EP to concur, he was very reluctant and searched the studies for evidence, eventually he said OK but as soon as I reached 65 I was to get back on them. After the TIA I couldn’t get back onto them fast enough. That was in 2015 and I’ve been on Apixaban ever since without any adverse events or affects.

[CDreamer]

PS - there have been quite a few posts over the years about TIA’s and strokes. With CHADs of 0 it really is your choice but speaking with hindsight, I would take them.

[secondtry]

No stroke, will be 70 this year. Lone PAF in remission. I take krill oil and fresh garlic, drink plenty of water, stay active including brisk walk x2 per day rain or shine. Now researching Nattokinaise (York cardiology has just done a video). Accept may have to take ACs at some point in 70's as risk increases.

This year my cardiologist wrote 'He is keen to avoid oral anticoagulation if possible and with a CHADS score of 1 and no episodes of atrial fibrillation for a long time, I think this is a reasonable strategy.' I believe the European Cardiology body (sorry forgot their full title) agrees whereas the UK is more in favour of starting ACs earlier.

[merlincat1 in reply to secondtry]

Hi can you advise where i can see the york cardio video pls?my husband takes natto after researching it and would be interested in watching it .thanku🙏

[secondtry in reply to merlincat1]

Sorry I should have said YouTube, here it is:

youtube.com/watch?v=e4H8Cq9...(Not working as expected?)

[merlincat1 in reply to secondtry]

Thanku so much

[waveylines in reply to secondtry]

Thanks Secondtry fascinating.

I think the benifits of natural substances out there are just not investigated enough. Sadly research relies on big pharma and this leads to a gross distortion of the possibilities out there. For example I found a small trial of the use of the vitamin B1 (water soluble) for another condition I've had for years that is slowly progressive. In the light of little else out there I decided to try it. It has helped me surprisingly well. I say surprising because initially it did nothing so only continued to use up what I had bought but then realised it was actually helping. If it stops progression as alleged I will be super happy. Again no large scale study done, no doubt due to lack of funding. Such a shame.... Vitamins minerals are greatly under used.... And little understood by medics. Mores the pity.

[secondtry in reply to waveylines]

Agreed. You may be interested in this link on my Twitter feed this morning from a trusted source, haven't read it myself yet.

covid19criticalcare.com/too...

[waveylines in reply to secondtry]

Thank you. Will have a read. I think it stems from the fact that medics believed that our food contains all the necessary nutrients we need so they have never been trained up in them. However over the years this has changed massively and it may no longer be assumed that the food we eat provides our body with what it needs. .

[Peacefulneedshelp in reply to waveylines]

Big Pharma can’t make any money off natural substances because they can’t be patented.

[waveylines in reply to Peacefulneedshelp]

So true!

[Peony4575]

My friends husband , so someone I actually know not hearsay , suffered a stroke while driving and crashed into a tree aged 50 slim and fit. And that’s how he found out he had AF. Made a full recovery . Again it’s risk/benefit analysis otherwise known as a Hobsons choice ! My Dad was in permanent AF for who knows how long before it was discovered in his seventies . No ac up to that point. No stroke. There is no certainty

[Frances123]

I am female and was prescribed Apixaban at 63. My chad score was 2 as the add 1 point for being female had just come in (I believe) Was at Drs for something else and he suggested going on apixaban. I said I thought it was at 65. Dr just looked and said “why wait”? That was good enough for me as I have always feared a stroke and anything I can do to lessen the odds is a bonus.

[Silky57]

Hello Tomred.

I’m relatively new to AF and am under 65 too. Although I’m newly diagnosed I’ve spent a lot of time researching this and giving serious thought to my own decision. The first thing I’d say in relation to your specific question is please bear in mind that:

a) there will be lots of people who would have had strokes anyway which will have been unrelated to their AF.

b) there will be lots of people with undiagnosed AF who have been going for years (or forever) with no stroke. So they won’t be on this forum.

c) you’ve asked for people who have suffered strokes here, so that invites a skewed (and scary) response.

That said, it is imperative the risk/benefit analysis is done by you and your medical team - hence the CHADS and HASBLED scores. If you have other factors, like family history, then these, of course must also be taken into the mix. It is a serious decision, requiring some thought.

The straw poll here may not give you the clarity you are hoping for as, with lone AF under 65, the decision is finely balanced - even the medics don’t always agree.

Finally we have to look at our own peace of mind. If all else is equal and ACs are well tolerated then then that is part of the answer too.

[OzJames]

at my last check up I’d just turned 65 so Chad of 1 the Cardio said anticoagulant if all stays as is until I turn 75. He put me on aspirin which I know is not an anticoagulant.

I did find a study which I’m sorry I never bookmarked. It compared the lower dose and normal dose of Apixiban. The higher dose of apixaban was better for protection against stroke than the lower dose of Apixiban but not by that much. The risk of bleed was less with the lower dose which is why they recommend it for when you are over 80. They discussed whether the lower dose may suit those wanting to lessen the bleed risk as the protection from stroke was at similar levels to warfarin.

I will search for it and post if I can find it

[ozziebob in reply to OzJames]

As someone who is concerned about risks re anticoagulation and brain bleeds, I would be more than interested to see the research you mentioned re lower doses. I hope you can find and Post it as you mentioned. My Bio explains the reasons for my ongoing concerns.

[waveylines in reply to OzJames]

Yes please if you would. Thank you. 😊

[Gumbie_Cat]

I was worried about the possibility of AF for quite a while, my two sisters having had strokes at 64 and 65, with undetected AF the underlying cause. I had a retinal vein occlusion at 64, but since the AFib was still undetected, I was told that even if it was present, they would not advise anticoagulants before age 65.

I felt like a ticking time bomb with so many strokes in my family history. Thank goodness for the extravagant Apple Watch purchase. Three months into wearing it, I got the first alert which enabled diagnosis. Though it has become persistent so rapidly, I am more than a little relieved to be on anticoagulants.

[waveylines in reply to Gumbie_Cat]

I think the apple watch is a great invention and it's ability to pick up Afib earlier surely must benifit. So glad you were able to get this sorted .

[Hidden]

My cousin, who also has AF, had several TIAs in his 50s. Needless to say my doctor agreed with me that it might be wise for me to go onto an anticoagulant early...

[Offcut]

I was put on AC Warfarin in 1992 as soon as they found I had AF it was not until I reached 60 (2005) that they then put me on Apixaban.

[Ppiman]

I am sure they have but very few. It seems that some people (as covid infection seems to have covered...) are living with cardiovascular issues that are invisible without a full investigation, and perhaps not even then. The cause seems to be an imbalance of inflammatory factors in the body that affect the immune response and many other things. This can be from a genetic or lifestyle cause, I gather. The Chads 2 score is the best available and seems to work very well.

Steve

[Sixtyslidogirl]

when I had this dilemma. I went to the Nice guidance which refers to the actual statistics from the studies that generated the guidance. It may be more use than this unscientific straw poll. For what it’s worth, I am 62, so have a score of 1 with PAF and have apixaban as a pill in pocket for episodes. So far it’s been very obvious when I have been in Afib.

cks.nice.org.uk/topics/atri...

[Autumn_Leaves in reply to Sixtyslidogirl]

Very interesting that you have apixaban as a a PIP. I was also told I have a score of 1 for being female but not offered anything as PIP. Do you have flecanide as PIP too?

I wonder to what extent blood clotting studies would help in these decisions. I had these tests done by haematology after I had a vascular injury caused by poor technique during a venesection procedure. One of the numbers indicated that I tended to bleed for longer than average (I don’t have the tests here in front of me so I can’t say what the test was) but this was some months before my first AF episode. I was surprised that cardiology didn’t request this test on diagnosis but perhaps the CHADS score is more important.

[Sixtyslidogirl in reply to Autumn_Leaves]

yes. Flecanide and bisoprolol also pip, though haven’t had to take them all together yet as only just got the flecanide.

[MarkS]

I had a TIA at age 58. I was very fit, Chadsvasc zero, lone AF, non-smoker, ideal weight, etc. Since then, I've been on warfarin and no further issues 🤞.

[Tomred]

Thank you to everyone for replying to my question regarding anticoagulation.

[JOY2THEWORLD49]

Hi Tomred

Regardless of age then 70 I had a stroke.

A stroke Embolic, with AF displayed rapid & persistent.

But 4 days hospitalised a carotid arteries scan showed a shadow on my thyroid.

Diagnosed with Papillary slow growing carcinoma, 1 surgeon saw a bit in left lobe.

So 4 mths later removal of thyroid, whole plus all right side lymphs (2 infected) I can say 3 years of yearly scans are CANCER FREE. But daily thyroxin a must to replace bodily hormones which work our body.

So in my case as I was not on any meds for Bp, Hr or Anticoagulant the stroke would have happened regardless of age.

But it wasn't severe. Could walk, had memory and got 10/10 when tested on my physical driving.

Also an anticoagulant although it could save you from having a stroke, may not!

cheri JOY 74 (NZ)

[Jackiesmith7777]

Yes my husband went into A and E with a high heart rate , he had an ablation in 2017 but unbeknown to us it had stopped working . They said he scored zero even though he had an ablation for his AF . Two days later he had a stroke .

[Hidden]

Please insist on an anti-coagulant… I asked several times but was told I was too healthy and only one point on the stroke scale for being female (61).

One Sunday I had a longer than before AF episode (15 hours when most had been 3 then 7). I rang the doctor that morning at 8am and was given an appointment for the next day. I was going to insist on a blood thinner. Too late- at 9am I suffered the dreadful trauma of a stroke and being blue-lighted to a hospital more than an hour away to have a thrombectomy. I couldn’t talk for 7 hours but fully recovered when came round from having the brain clot removed. I have no cognitive or physical after effects, thank God.

This was only three weeks ago and the experience has devastated me. I have always been a healthy strong resilient and positive person but the anxiety from the fallout of the event and related trauma is indescribable. I am going to get support but the psychological impact is enormous. The mix of emotions is overwhelming at times, even some resentment from being ignored about my requests (even though I am fully aware of the ‘weighing’ up of risks).

At least I am now finally on Flecainide (100mg twice a day) and the anti-coagulant, Edoxaban. Still getting breakthrough AF which of course terrifies me just now, but I’m sure I will regain my confidence and that I just need to be patient and kind to myself. Plus wil get Flecainide dose adjusted if I need to go up. Have already gone up from 50mg twice a day.

I wish you luck and I hope that my awful warning has helped you.

Take care, Julia.

[Tomred]

thank you Julia, i hope you make a speedy recovery, i am relying on some natural blood thinners wether they work or not i dont really know, ive asked ep but i got a stern no on anticoagulation , its hard to deal with during and after a 24-36 hour bout once every 7-10 days approx.