New to AF

[AdamHi]

Good afternoon, I have a question relating to the use of NOAC, specifically, Apixaban. I had a recent AF event, which is one of two that I have had over the last 3 years, I am 51. I have been advised that I need to take anticoagulant therapy in order to reduce my risk of Strokes (Unfortunately genetics are working against me as both Mother and Grandfather had strokes). My main issue is in relation to potential bleeding problems whilst taking this drug.

I have had a couple of events of bleeding (Rectally) over the last three years and have had various investigations performed (Endoscopies etc) without a conclusion to the cause. I am truly very anxious about commencing this drug regime and having read the details of Apixaban on the manufacturers web site, am not feeling any better in relation to the noted common side effects.

I appreciate that no one can give a medical response to this, I have asked for more details from my doctor, however, I would be most appreciative to hear from anyone else who has been in this position.

Thank you in advance.

[BobD Volunteer]

AF makes us five times more likely to have a stroke which is why anticoagulation is so important, especially if you have other co-morbidities such as high blood pressure. The risk of a bleed is actually quite small and as in many things in life it is a balance of risk over side effects. Some cases of bleeding such as from gums is easily understood as gum disease whilst your situation may be more difficult to pin point. I would be guided by my doctors in your shoes. I think that stroke is the greatest fear of most of us. As a doctor told us at our recent conference, you can reverse a bleed but you can't a stroke.

[10gingercats]

I hesitated when diagnosed with 'a quite likely' diagnosis of AF and went on to have a TIA. I was not a likely candidate aF yes but no comorbidities I was aware of.It might have been caused by another heart issue I found out later but it was as likely to have been caused bu not taking an anticoag.

I took Warfarin for a few years and then changed to Apixaban. Apixaban is highly regarded and most people do not have problems of bleeding with it.It seems to be the most 'popular' of the NOACs .But as Bob said do be guided by your doctor .For myself I would be scared stiff of going unprotected .

[Capri62]

I had been on Apixaban since 2014 due to AF. In 2016 I had a stroke, they told me I would be on Apixaban for the rest of my life. Earlier this year I was taken off Apixaban due to having two brain bleeds. They now want me to go back on Apixaban. They believe the bleeding to be the lesser of the evils. Incidently I have a chads score of 4.

[AdamHi in reply to Capri62]

Sorry to hear of your bleeds, I am glad that things were positive on those occasions, your experience is one which does of course reinforce my concern about taking them. I have looked at a lot of information ranging from clinical trials through to long term studies and mortality data analysis, Yup, i am creating my own anxiety. Not a clue how to proceed to be honest, I fear that I am my own worst enemy.

[Capri62 in reply to AdamHi]

I understand your concerns. I take the attitude that the experts know far more than I ever will, so I generally go along with their recommendations. And try to put it to the back of my mind. It becomes more difficult when the experts disagree as to the best course of action. In my case they all agreed that the stroke risk is of greater concern than the risk of bleeding.

Good luck.

[AdamHi]

One thing I have found out that will no doubt interest everyone on either Apixaban or Rivaroxiban is that a reversal drug has been developed with seemingly strong results. The unfortunate part of it is that NICE have decided not to approve it, at least that is how the document that I have read, seems to note. The drug, Andexanet Alpha, which is FDA approved, but not UK, seems to me, not being a pharmacologist and only looking as a layman, to be something that most people on these NOAC's would be happy to see available. I also note that there is a clinical trial still recruiting for this, so who knows, maybe in the future, NICE, will offer this drug. I have serious reservations that they will.

[Gfern]

Sorry to hear of your dilemma it is a difficult choice to have to make without knowing the cause of the bleeding. For what it’s worth and my experience may be of help I had a similar experience after my AF diagnosis and was prescribed Xarelto which I was very nervous of taking due to having Radiation Proctitis after my prostate treatment. This had caused me serious problems due to the rectal bleeding but after many endoscopy treatments and photo coagulation the bleeding was minimised to the point where it wasn’t a problem anymore. Hence my reluctance to take Xarelto also after reading all the bad things that can happen on the drug. I didn’t take it but was always concerned at the stroke possibility but in my mind, it was a choice of bleeding to death or a stroke not the best of choices.

Anyway moving forward I was to get an ablation and had to take a NOAC but obviously very nervous about this, so they started me on 2.5 mg Eliquis to monitor the situation and to give me some mental comfort, and I am pleased to say had no problems so after two weeks went on to the 5 mg dose and again no problems after taking them for the last 12 months.

You really need to resolve this in a way that allows you to take the Eliquis as the others said strokes are not a good choice, just talk to your doctor again and set up a close monitoring of your rectal problem whilst you take the NOAC.

Best of luck hope you resolve the problems

[AdamHi in reply to Gfern]

Gfern, you made me laugh and cry all at the same time. The comment "it was a choice of bleeding to death or a stroke not the best of choices" is the dilemma. It's a tough choice, especially as I have a relatively young son, 5 years old, i'm an older dad at 51. I find that this is all a bit mid life crisis and at this point, i'm not managing it very well. Thanks for your comments.

[diannetrussell]

Hi Adam, very understandable concerns. I spent the first couple months on Apixaban freaked out about bleeding, it was making me very anxious and nervous. I worried about anyone else driving in case of a crash. I worried about gardening, snorkelling, playing games with the boys, being away from home or out of reach of hospital. I kept having nosebleeds, but gained confidence when I could stop them in 5 minutes with an ice pack. Then my doctor suggested that when there is Staphylococcus in the nose, it weakens the blood vessels and they bleed easily. So 3 months ago she gave me an antibiotic cream to stick up my nose and it worked. No nosebleeds since. Then I tried it on a bleeding haemorrhoid, and it worked there too. I wonder if your rectal bleeds could be exacerbated by an out-of-balance intestinal flora? It can't hurt to go on a good probiotic, whether that's the cause or not. My top favourite is Mutaflor, recommended to me by my gastroenterology surgeon. He uses it too. I'd also be looking at a serious dietary upgrade if you haven't already, like quitting coffee, alcohol, reducing sugar/dairy/gluten, fried takeaway, etc. All those wreak havoc on sensitive intestines and their friendly bacteria.... But being on anticoagulants in general, I agree, no fun. But the effects of stroke are so much worse in general than the effects of a bleed, I prefer to risk a bleed than a stroke! And look after myself, be very conscious of my movements, my daily rhythm, my timing of taking medication, limiting screen time and emotional disturbances, getting enough gentle exercise like a 1/2 hour daily walk and a swim or two per week, etc, to minimize dramas and stay as well as can be.

[AdamHi in reply to diannetrussell]

Thanks Dianne, I have been adjusting diet recently, before my diagnosis last week. Have been using a live yogurt, Total Fage 0% with some honey. Have cut most sugars out excepting the odd bit of chocolate + aforementioned Honey and reduced some carbs (T2 Diabetes) After a lot of investigations, I seem to have found some of the cause being Gluten, which I have been removing from the diet as well. I don't drink Alcohol regularly, maybe once in 3 months, so hopefully that helps. I will look up the items that you have noted and hopefully get some more info. I have an echo booked for this Sunday, which was amazingly quick, so hopefully I'll have a decent idea of my heart condition quite soon. Thank you for your input, very very helpful.