Treatment uncertainty

[skiing-at-74]

Following an ECG which unexpectedly showed I had AF, I was prescribed 5mg Apixaban twice daily.

I have been taking these for 9 weeks and in that time I have suffered 13 severe headaches and almost as many mild headaches. Treatment started at about the same time as the hay fever season and I thought I was suffering from a bad season. However, the last headache was so bad that my wife had to take me to A&E.

Here, I found headaches are a very common side effect of Apixaban, even though I had read the enclosed leaflet very carefully.

I had already given up on Apixaban two day earlier. The A&E doctor agreed this was the right thing to do and then prescribed an almost similar drug. River something I'm sure peeps on here know what I am talking about.

I am not going to take that... yet.

So here you have it.

I am an ex-firefighter.

Always stayed fit.

Non smoker.

Minimal drinker - a couple of nightcaps once or twice a week.

Stretch and cross-train every morning.

But because I have AF which I was unaware of until this ECG I am put on a drug which has devastated my life. I would rather die than carry on in the way that the last nine weeks have been.

The A&E doctor told me I am low risk of stroke ie AF and 74 years old.

To be honest I am quite frightened of this new drug as the side effects look possibly worse than the apixaban.

I see it as (at this time) low risk of stroke versus almost certain life changing side effects.

I recently had a CT scan and I am waiting for the results from that. When I have discussed these results I may be more amenable to an anticoagulant but not apixaban!

Any opinions?

[Midnight_Voice]

I was on Warfarin for 17 years until I was switched to Apixaban, which fortunately I can tolerate without side effects. It is worth trying the modern alternatives to Apixaban though, as side effects can be surprisingly specific to one drug, and ‘similar drug’ does not necessarily mean ‘similar side effects’.

But if you continue to have issues, they could put you on Warfarin, which is totally different. But Warfarin needs constant management, not the ‘set and forget’ of the modern alternatives, and I don’t miss the constant INR measurements, and dosage adjustments, that come with Warfarin.

I had my own machine (£500) and was taught to self-adjust my dosage, which minimised the hassle, and was necessary to allow me to continue working abroad, but now with Apixaban, this is all a thing of the past.

So do try at least one modern alternative to Apixaban before perhaps falling back to Warfarin.

[ozziebob]

I am somewhat surprised that you were prescribed apixaban, then rivaroxaban, as I thought edoxaban was the first choice anticoagulant in most UK health authorities. I would ask why you were initially offered apixaban. There must be a medical reason for your exception? As for edoxaban, in the research I've seen, it has a lower risk profile compared to other DOACs and Warfarin. But, of course, individual medical history and individual side effects make the choice not so straightforward.

Good luck finding a suitable anticoagulant.

[ozziebob]

PS. In the case you continue to have problems with anticoagulants, you might be interested in the REACT-AF trial just started in USA, about the effectiveness and safety of a PIP approach to anticoagulation. Sadly results will be a few years away. This approach is described well in this article, co-authored by the trial's current director. Pay attention to the red/green infilled table that gives stroke risks according to both your AF event duration and your cha2ds2-vasc score. Very helpful ...

“Pill-in-Pocket” anticoagulation for stroke prevention in atrial fibrillation

onlinelibrary.wiley.com/doi...

bob

[MazzyB]

Sorry I can’t help as I didn’t get on with Apixaban so went back on warfarin. Hope you get sorted.

[Brookiebiceps]

Rivaroxaban has a once a day, low dose

[skiing-at-74]

Thanks for all the posts.

Food for thought.

As I said I had a scan so will need to discuss that with my cardiologist and I shall be discussing the whole thinners thing and what the other suggestions might be worth considering.

Here I am booking up for March in the Alps doing my favourite - skiing. Now that's a drug that really is difficult to give up.

Steve

[Danoli80 in reply to skiing-at-74]

My advice would be discuss skiing with your Cardiologist before booking your trip. I was unexpectedly diagnosed with AF last year after I had booked my ski trip. I discussed this with my Cardiologist who advised not to go. He explained that Apixaban and similar drugs incur an increased risk of internal bleeds, in particular after a heavy fall or blow to the head. In either case the advice received was to go straight to A&E even if still feeling well. This may not be easy at the top of a mountain.

After consideration I took his advice and did not go. If you still intend to go make sure you get the right winter sports insurance to cover your condition.

Not sure what to do about skiing next year. I am considering Cardioversion which may put my heart back into sinus (normal) rhythm. If it works i may be able to stop p taking Apixaban. However I am advised that this is not always successful.

[skiing-at-74 in reply to Danoli80]

I have stopped taking the Apixaban. My headaches have stopped and I can enjoy life again. I have booked for next year but I can cancel without charge. Talking to the doctor in A&E she said that I am low risk and the cardiologist was being cautious. It would be normal to consider thinners at 75 and I am not quite there yet.

It is going to take quite a bit of persuading to get me back on thinners. Especially if they are going to impact my life to such a large extent.

Good luck with your treatments and I hope you're suitable for cardioversion and that it works for you. I'm sure hanging up your skis (for life) is with a tear in your eye.