Nosebleeds and Apixaban : Some years... - Atrial Fibrillati...

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Nosebleeds and Apixaban

Camelia23 profile image
35 Replies

Some years ago I had occasional nose bleeds,usually in the winter and made worse by going into dry atmosphere and from one nostril only. Starting Saturday 6th May I had 5 quite heavy ones,including clots. I managed to see an actual doctor yesterday who diagnosed an infection so prescribed Naseptin cream 3xday for a week. I asked about cautery but gps at my practice don't do it. Despite being almost 79 so 13 months from 80 and weighing 8st 9 she wouldn't let me reduce to 2.5mg Apixaban. I lost quite a lot of blood yesterday but so far cream seems to be halting the flow of it. Anyone else had similar experience? I'm reluctant to sit in A +E for hours. Doc suggested this if blood flow continues.

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Camelia23 profile image
Camelia23
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Camelia23 profile image
Camelia23

Sorry, not related to cataracts and gout! My error

I think the recommendation for reducing dosage due to age and weight relates more to the likelihood of a reduction in kidney function rather than an increased risk of bleeding. If your kidneys are in good shape as determined by blood tests, this may be your GP is reluctant to reduce your dose. Any excess chemicals leave the body via the kidneys…….

Camelia23 profile image
Camelia23 in reply to

Thank you Flapjack. I think that's what the gp was trying to say yesterday.

mjames1 profile image
mjames1

Short term, I would contact your ep now and ask if you can hold your thinner (AC) for a couple of days until the bleeding is controlled.

As to long term, the decision to use, not use, or reduce the dosage or thinners is multi-factorial, including kidney function, fragility of blood vessels as we age, fall risk and of course, our afib burden.

There is also an emerging concept of PIP anticoagulation where you only take a thinner if your afib episode lasts longer than 60 minutes and then take it for only 30 days. So, if you only have two afib episodes a year, your thinner exposure would be only 60 days versus 365.

A new trial on this concept is now enrolling. More info here:

news.northwestern.edu/stori...

Jim

Camelia23 profile image
Camelia23 in reply to mjames1

Thanks, Jim. That's very interesting regards anti coagulants. I had to stop them when I had a colonscopy January 2022 but only for 24 hours. The gastroenterologist said afterwards it should have been at least 48 hours and maybe 72. When I had a sigmoidoscopy 2 weeks later I still had excess bleeding.

mjames1 profile image
mjames1 in reply to Camelia23

Exactly. They are stopped temporarily all the time for procedures, etc, so don't see why they couldn't be until you get your bleeding under control, with your doc's permission.

Jim

Camelia23 profile image
Camelia23 in reply to mjames1

To use a cliché this could be a game changer! Do you have an iPhone? I have sometimes cut my tablet in half; for example when I had a tooth extraction. I'm not recommending this to anyone else. I last saw a cardiologist in Feb 2020. I have not seen an Ep

mjames1 profile image
mjames1 in reply to Camelia23

I have an iphone although their afib notfications are not real time, so PIP thinners makes most sense for those who know when they are in afib. My understanding is that the Iphone's used in the PIP thinners trial are specially programmed for near real time notifications of afib.

Jim

in reply to mjames1

Unfortunately the world is full of people who have no idea they have AF until they have sadly had a stroke and almost as many who know they have AF but would not have a clue if it kicked in while they are asleep. Every now and again we hear talk about taking an anticoagulant as a PiP. However, here in the UK the general thinking from the medics is that regardless of the wide range of gizmos available, no manufacturer would take the risk of endorsing their kit as a safe method of enabling anyone to know when they should take an anticoagulant as a PiP. I imagine there is nothing to stop any individual from choosing to try it but every EP I have discussed it with has look of disbelief. It will be interesting to see what happens in the future but I think risking people’s lives is serious stuff…..

mjames1 profile image
mjames1 in reply to

If you look into the trial criteria and structure and Dr. Passman's underlying viewpoint, I think many of your stated concerns would be addressed. Last year, I had a bad encounter with a chain saw. Still healing. Fortunately at the time I was not on thinners. And yes, stroke is a real risk, but there are risks both on and off thinners and hopefully after the trial we will come out with a safer road for everyone moving forward.

Jim

Camelia23 profile image
Camelia23 in reply to mjames1

I'm certainly interested

Camelia23 profile image
Camelia23 in reply to Camelia23

I've noticed that after a day of using the Naseptin there has been hardly any blood. I'm still wearing my black t shirt and black cardigan just to be on the safe side!

Popepaul profile image
Popepaul in reply to mjames1

I concur with this point. I take edoxaban, my risk of stroke is 1%. My risk of serious bleeding is 2%.Regards

in reply to mjames1

For the benefit of others I’ve added a link to Dr Passman’s video regarding taking anticoagulants as a PiP so that they can draw their own conclusions.

radcliffecardiology.com/vid...

I’m not qualified to comment so I won’t………..but only 1518 views and 2 likes is interesting

mjames1 profile image
mjames1 in reply to

Thanks for posting. What is even more interesting is that after this video was published, the American Heart Association liked it, as well as the National, Heart, Lung and Blood institute who are contributing $35 million to fund the trial.

Jim

Silky57 profile image
Silky57 in reply to

Technology is sophisticated these days & developing apace. My cardiologist’s comment was “Wow!” when looked at the trace from my Apple Watch; he said it was every bit as good as a one produced in hospital. Therefore, if we can accurately track and alert a patient when they are entering AF and medicate them appropriately at the relevant time, surely this would be preferable to being exposed to an a/c with its inherent risks 24/7, 365. I’m excited the Apple/Northwestern trial is going ahead. 🤞🏻

mjames1 profile image
mjames1 in reply to Silky57

Well said. It's not black and white. My interest in motorsports and other activities has always put me at a higher than average bleed risk. I have to weigh that against the risk of a stroke. But forget me. Take an all too common example of an unsteady senior who is at fall risk, as well as stroke risk. What is the correct approach here? This trial will hopefully give us data that will end up saving lives, not putting lives at risk.

Jim

ozziebob profile image
ozziebob in reply to mjames1

Please read my question to FlapJack just below.

in reply to Silky57

see my reply to Jim above…..

ozziebob profile image
ozziebob in reply to

Yes, I also am interested in exploring possible viable alternatives to the current binary choice of all or nothing anticoagulation. You may know that my current decision to refuse anticoagulation is related to my previous (2016) unexplained chronic bilateral subdural haematomas, but my choice is under constant review.

Do you have any words of wisdom re my situation? My question is raised out of genuine concern for my decision, and also on behalf of the many others who, for different reasons, do not tolerate daily anticoagulation well.

in reply to ozziebob

I’m afraid I haven’t Bob, I’m very aware of the genuine difficulties some have regarding taking anticoagulants and anything which can be done to help them is applauded.

The various links which have been featured in this post are interesting of course, but they are also full of important references to the extreme caution used to identify a limited supply of suitable candidates plus serious comments used to manage expectations. As I have said, I am not qualified to make any comments about the subject but whenever the subject of anticoagulants being prescribed as a Pill in the Pocket here in the UK, all the medics I know seem to share a different view. There is often a divergence of opinions from different countries which I guess is only to be expected.

Whenever opinions about controversial issues are expressed enthusiastically by members it often doesn’t matter much because here in the UK, medication, treatments etc are fairly well controlled but to a degree this is different. Once a patient is prescribed an anticoagulant, particularly if they are pensioners or perhaps some other system, they are prescribed and supplied anticoagulants free of charge and for life. However, whether or not they take them is entirely up to them. If they have similar views to you for whatever reason, they may not be so well informed and take it upon themselves to just stop. The chances are that there are absolutely no medical reasons why they shouldn’t take anticoagulants so they have, as a consequence, put themselves at enormous risk. That’s the only reason why I speak out on this and some other controversial subjects and it only causes one person to think before doing something they regret, I believe its worth it…….

Silky57 profile image
Silky57 in reply to

Thanks - an interesting listen and a game-changing study, particularly for those of us at the lowest end of the CHADS score range and/or low frequency/short duration AF.

Chuyueling profile image
Chuyueling in reply to mjames1

Separately, thanks for this. I've always wondered about my. Mum's dosage being too much, esp since she is a tiny 35kg. I realise now it isn't just a case of being proportionate to size.

waveylines profile image
waveylines

Hi Camelia,My EP said the dosage is based on population averages not individual need so it quite possible you may need a smaller dose. However there is no research to prove this currently but there is ongoing research looking at it. Won't be ready for a few years.

I does seem rather ridiculous for you to have to carry on taking it given the extent of the bleeding. Your GP probably didn't feel knowledgeable enough to say to temporarily stop it. I have had a couple of nasty bleeds and both times was told to stop temporarily. Also for operations I was told to stop taking it for 24hrs before. So sometimes it's necessary.

Are you able to contact your cardiology department and speak to them about it? They can advise you and your GP.

Hope you feel better soon.

Camelia23 profile image
Camelia23 in reply to waveylines

I'm phoning my cardiologist on Monday re the Apixaban dose. I haven't seen him since 2020.

Mainman profile image
Mainman

I might be wrong but I think the Naseptin cream is to stop infections not blood flow. If the bleeding persists you need to got a referral to ENT for nasal cauterization. I also ordered some black serviettes form Amazon to hide the bleeding.

Camelia23 profile image
Camelia23 in reply to Mainman

Yes, thanks Mainman it is mainly to stop infections rather than blood flow. It must just be a coincidence that it has stopped bleeding. That was about 2pm yesterday. I've been for a walk under trees and did some gardening. I'm not usually allergic to pollen but have been sneezing loudly. Affected nostril keeps running. It could be I'm allergic to the cream! Before I had the bleeds I had a seconds warning to grab a tissue. Now it's a similar sensation but it's clear. That's a very slight nuisance rather than a mini disaster.

Camelia23 profile image
Camelia23 in reply to Mainman

Now black serviettes seems a brilliant idea!

Jajarunner profile image
Jajarunner

Hi, expert on bleeding here as I have HHT which presents as heavy nose bleeds amongst other problems. The cream is for the infection but will help keep nose moist. Rose geranium oil is another good lubricant though others use Vaseline, lanolin nipple cream etc. Anything to keep it moist.When I get a small bleed a squirt of Vick sinex spray constricts the blood vessels and can stop it straight away. Can cause afib in some people.

You can take tranexamic acid to stop a bad bleed if doc will prescribe it this hardens the clots so they stick better to the wound.

I was on 2.5 apaxiban as recommended by private EP but Papworth put me on 5. It made quite a difference.

My Afib is fast and dramatic and always requires immediate trip to A&E for cardioversion so I think, since I'm low risk of stroke on Chad score, I shouldn't need to take it all the time as I know when I'm in afib. This is something I will ask Papworth if I ever get an appointment!!! It seems ridiculous that anaemia is probably the trigger for afib in HHT sufferers yet I'm given something to make the bleeding worse!

Might be worth reading up on HHT too, though you would probably have noticed bleeds before now if you had it (it's very undiagnosed as most GPs know nothing about it.)

Good luck xxx

mjames1 profile image
mjames1

Sorry, it was meant for you. I will now try and re-direct it.

Jim

mjames1 profile image
mjames1

Don't know about "wisdom" 😀 but a lot of the points both for and against PIP thinners have been covered in this thread, including Dr. Passman's video, which gives the cons as well as the pro's. Even more available on the internet.

Personally, I find this concept intriguing as opposed to the one size fits all approach. I hardly ever do a number of activities I love because currently on thinners and when I do, I worry. And yet my episodes are few and far between. Last summer, I had a bad encounter with a chain saw. Crazy, but one of the first things that came into my mind, was "thank ___ I'm not on thinners now!" :)

I did go back on thinners when my afib burden increased, but if my ablation is successful, I'm giving serious thought to the PIP approach, perhaps even enrolling in the trial.

Right now, it's all just based on the ever evolving CHADS.... score.

According to current scoring, someone who smokes, is obese and out of shape, with a high HDL and Triglicerides, with uncontrolled blood pressure and blood sugar, with type A blood (higher stroke risk), in permanent afib, can have the same risk score as someone who exercises regularly, with a normal BMI, eats clean, has a great lipid profile and have both their blood pressure and blood sugar under control with meds and/or lifestyle interventions, with type O Positive blood (lower stroke risk), and has and only has one short afib episode a year!

Does that make sense to you? Doesn't to me :)

But in the end, I don't think this is a decision anyone can make for anyone else. Speak to your doctor, do your homework and decide what makes the most sense for you. Lastly, keep in mind, the trial has not been completed, it's just started enrolling.

Jim

Camelia23 profile image
Camelia23 in reply to mjames1

Lots of detail to mull over here. Yesterday I made the decision to cut my Apixaban in half just for morning and evening but today I'm back on 5mg as I chickened out. Hope you don't have any more chain saw episodes. 6 months ago I bought a super sharp small kitchen knife . My keen cooking friends were all saying how a sharp knife was safer than semi blunt. First time I used it I cut small piece of my thumb. It's back in its box ready to give to one of my friends.

mjames1 profile image
mjames1 in reply to Camelia23

Sorry. Ouch. :( Yes, I've been told the same thing about knives, but I require them dull as they can be :) Threw my Mandolin into the garbage. Don't ask why :(

Jim

waveylines profile image
waveylines in reply to mjames1

Well said Jim. And to underline what Jim has wisely said, that the trial has several years to go. Meanwhile my cardiologist could not say that 2.5ng would give me the same protection level against a stroke as the full dose of 5mg.I've chosen to stick with the 2.5mg with that awareness. It's definately something you need to discuss with your cardiogist.

djmnet profile image
djmnet

I had an issue with severe nosebleeds a few months ago. After third time of calling for medics to my home while thinking I was going to bleed to death due to the amount of blood, I made the decision to stop the apixaban until I could see an ENT doc and have my nose cauterized. Once it was done, I went back the apixaban using half tablet for the next month or so until I felt comfortable that the nosebleed had been fixed. I'm now back to full dose twice daily and have had no issues. I'm persistent afib, but at a fairly normal resting heart rate. We all have to make our own decisions about what is best for us given the circumstances then in existence. In the meantime, you need to see an ear, nose and throat (ENT) doctor and get the issue fixed ASAP. I was surprised to find that the cauterization was easily tolerated -- did not hurt at all, much to my surprise. Good luck, but get thee to an ENT as soon as you can.

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