Anticoagulants

[Peg99]

Hello Everyone

This is my first post and I am writing it to seek your help and experience please, about the minefield that is anticoagulant medication.

My husband, aged 74, has had ectopic heartbeats and SVTs for 30+ years and has taken Flecainide 100mg twice a day for that. He has normal blood pressure with a slightly low diastolic reading - about 50-ish and 1st degree heart block.

Following a 7 day ECG (Zio Patch) he has now been diagnosed with Atrial Fibrillation and his consultant has suggested that he start taking a low dose beta blocker (Bisoprolol) and Dabigatran, an anticoagulant.

My husband is really concerned about the anticoagulant and I was wondering if any of you good folk could help with alleviating our worries.

It seems that all the anticoagulants have much the same side effects and they all do much the same job of thinning the blood to reduce the risk of stroke. We really do understand that. It is the side effects, particularly the 'bleeding' that bothers us.

Much is made of this bleeding in the side effects listed online.

Is this bleeding very common amongst those who take anticoags?

If you find blood in your urine or stools, do you immediately go to A&E and if you do, do you have to wait hours and hours to be seen? Do they 'treat' the bleeding or just give you the coagulating drug to reverse the anticoag?

Is it the same for nose bleeds or even what till now have been flecks of pinky blood on a hanky after blowing your nose?

What happens when you have an injection, cut yourself shaving; does the site bleed profusely for hours? Do you need to seek help?

What about piles that up till now have only just given a streak or two of blood on the loo paper; will that be streaming blood on anticoags?

Are all these 'bleeds' investigated' whereas before they would have been spots that nobody would even have known about?

With Dabigatran, there seems to be a side effect of stomach acid. This is a worry to us as my Husband already has acid problems with oesophageal acid reflux, oesophagitis and a sliding hiatus hernia for which he takes 50mg Omeprazole a day. Anybody any experience of Dabigatran causing stomach acid please?

I am sure you get the picture of the type of conversations and thoughts we are having here at home. And I am sure that there are many things we have not yet thought of.

We are at a loss and would really welcome some real world information from people who have lived with taking any anticoags for a period of time, especially those who take Rivaraxaban, Apixaban, Edoxaban or Dabigatran.

I'm sorry for such a long post and what must seem like really basic questions to those of you who have so much more serious conditions. I hope you can help us with your actual experiences so we can get some idea of what it's like living with all this. A bit of anecdotal evidence from real people would make my Husband feel more comfortable discussing his options with his Consultant later this month.

Thank you for reading this and thank you in advance for any help you can offer.

[Czech_Mate]

Hi

I'm not a medical expert, just another rather confused patient. As far as I know I have a mixture of heart arrhythmias including afib. I've been on apixaban since I first saw a cardiologist last May. As far as I'm aware without side effects. Due to some very slow heartbeats, particularly at night I was fitted with a pacemaker. For colonoscopy and dental treatment I stopped the apixaban 2 or 3 days before. Important is also not to restart immediately afterwards.

The other possible thing of interest was in February I spent 3 days in hospital after feeling confused for tests relating to stroke ( turned out it wasn't). The doctor replaced the apixaban for dabigatran during the hospital stay then reverted to apixaban when they sent me home. Is it stronger?

Sorry I'm rambling. Not sure if that's useful.

[Peg99 in reply to Czech_Mate]

Hi Czech_Mate. Yes your post is useful and it's very encouraging to hear that you have had no side effects that you have noticed since starting Apixaban a year ago. It is comments just like this that are helping us sort things out in our minds and I thank you for taking the time to reply to my post.

Re your question as to whether Dabigitran or Apixaban is stronger, I don't know the answer. I've certainly not read anything to suggest that so can't even guess at why you meds were changed in hospital and then changed back again on discharge.

Thanks again for your helpful reply.

[Carercmb]

After a stroke and many blood clots my husband has been on this medication for the past 10 years.

His thickness of blood fluctuates dramatically if he has a hypo as he is also diabetic or an infection.He has never had a problem as he frequently has blood tests to determine his daily dose.

You have to take precautions when having any medical procedure.

My husband leads an active life with his DIY projects and gardening and often cuts himself. Over the 10 years of taking anticoagulants we have had no concerns concerning bleeding.

[Peg99 in reply to Carercmb]

Hi Carercmb. Thanks ever so much for reply to my post. We are getting more and more encouraged by the reports like yours, which show that an active life has not lead to any concerns about bleeding. And 10 years is a long time.

Do you mind me asking which anticoagulant your husband takes please?

[Carercmb in reply to Peg99]

he is on Warfarin .Has lots of health issues, leads a very active life.Fell out of a tree with a chain saw, had to have vertebrae fused, last week fell downstairs but no bleeding problems.I am anxious about everything so I understand your concerns.Takes time to accept all the changes we go through reaching old age.

[Peg99 in reply to Carercmb]

Gosh, he does sound to have had an eventful time of it. Amazing that there has been no bleeding problems and I'm glad about that for you both.

I suppose it does take time to accept what happens to us and I have to say this has been a bit of a shock to us. Thanks for sharing your times, it really does help us. Thanks again.

[Carercmb in reply to Peg99]

my husbands stroke and many blood clots this past 10 years has made him determined to live life to the full except for long haul travel to USA to family but no bleeds .

[Peg99 in reply to Carercmb]

What a wonderful attitude and what strength he must have to live that. Good Luck to you both and thanks again for your comments.

[Hidden]

I am on 'for life' low dose aspirin which is an antiplatelet rather than an anticoagulant, but my understanding is that the only difference in how these two groups of medicines work is how they stop blood clots forming so in that regard the result is the same. All I can say is that, compared to before, small cuts are more noticeable, larger cuts take some effort to stop the bleeding, and I bruise easier. And if I have any internal procedures carried out I am asked to stop taking the aspirin for two or three days before. However if I experienced unexpected blood in urine or poo, or bleeding from the nose or mouth I would be seeking medical assistance, but this has not been necessary so far.

[Peg99 in reply to Hidden]

Hello LowerField

Thank you for replying to my request for help. My husband has been taking 75mg of aspirin for a few years now so I suppose, like you, he is part way to experiencing the effects of blood thinning. It is a good way to look at it and it is something we can get our heads around in weighing up the risks of anticoagulant tabs or not.

Thanks again for your help.

[Hidden in reply to Peg99]

My initial reaction to taking any new health professional recommended medication is one of reluctance but also acceptance. However what follows once I have started is in some ways a trial to see how I react. That said I have only had a relatively unpleasant experience with one set of meds which I was able to address by talking to the prescribing professional and the remainder of the meds I take don't give me problems. Medication is there to help us not cause us problems and in extreme reduce our quality of life, and there might come a time where you have to balance the apparent good meds are doing, especially if they are literally keeping you alive, against the side effects. Certainly if meds are prescribed to simply reduce the risk of something bad happening like statins, and the side effects are intolerable, then not taking them might be an option, and you just accept the increased risk. The same might be said for anticoagulants and antiplatelets but that again it a personal choice.

[Peg99 in reply to Hidden]

Thanks LowerField. I think you've put your finger on it. We need to talk at length the the Drs/Pharmacists/Nurses and come to an informed decision while weighing up the risks involved of taking the meds and not taking them. Trouble is, I'm not sure we entirely trust the Drs - neither the consultant or the GP, which is why we feel a bit lost and as if we are being herded down the route they want for some unexplained reason. It's a big step and I confess, there is a lot of fear invovled.

Thanks for your posts in this, they really do help.

[Peg99]

Thank you AnneFromOz. It helps to hear your experiences. At least we can dismiss those awful pictures in our minds that the slightest scratch will bleed profusely!

You are right, we do need to weigh up the risks of taking anticoags against the risks of stroke and hearing of your experience helps with that, thank you.

[Hylda2]

I’m nearly 80 and have been on Dabigatran for years. Yes I bruise easily but certainly don’t bleed a lot. To stick my finger for a private blood test is a work of art

[Peg99 in reply to Hylda2]

Hello Hylda2.

Thanks for a positive and reassuring reply. I reckon my Hubby can cope with bruises but we are pleased to hear that you have had no bleeding over the years. Thanks again for your reply.

[Hylda2 in reply to Peg99]

I do wear a wristband so that were I to be in an accident people are warned I could be bleeding internally

[Peg99 in reply to Hylda2]

That's a very good idea Hylda2. I will get one for my Husband in due course.

[Bran_flow]

Hiya I'm on a thinner for past year with aspirin as well. I now get alot of bruises so many I prefer not to wear short sleeves in warmer weather I always bruised even before HA so alot worse now I worried about bleeding alot especially internally first few months with so many bruises but a year on its been OK. I do bleed a wee bit longer from cuts or after blood tests and a few times after going to loo which I never have before but apparently these are all side effects so I've never asked doctor about them.

[Peg99 in reply to Bran_flow]

Thanks for taking the time to reply Bran_flow and for giving us the benefit of your real life experience.

It is the fear of internal bleeding that is causing worry and it is reassuring to hear that you were worried too but have got through the year with no problems in that way. I'm sorry to hear that your bruising is so bad that you feel you have to cover up, especially now the Summer is coming. There are no drugs without side effects and as others have said it is just trying to balance things out to get the maximum help with the minimum harm.

Thanks again for your reply.

[BernieMB]

Hi,

Try not to worry so much, which I know can be difficult. I was prescribed Clopidogrel for a suspected TIA 3 years ago . It’s an antiplatelet - blood thinner given to prevent strokes and heart stacks. Later that year I had a pulmonary embolism and was prescribed Apixaban aswell. Two years ago I had aortic valve replacement and was continued on both meds. So at this stage I’ve been taking them for 3 years now. I’ve had no issues really. If you get a cut you just apply pressure for longer and take more care using sharp knives. You are advised to get yourself checked out if you fall and bang your head but other than that just go by common sense. Check if Omeprazole is ok to take with the blood thinners he is on because I’ve read that it can reduce the effectiveness of the blood thinners. I take Lansoprazole. Always get him to carry the alert card for the blood thinners.

[Peg99 in reply to BernieMB]

Thank you for your helpful comments BernieMB. I will certainly make sure my husband asks particularly about Omeprazole.

It's good to know that you have taken Apixaban for 3 years without problems. That is the drug my husband is favouring at the moment but he is still looking into it.

The alert card for blood thinners is very important, and he will certainly carry it at all times if he ends up on one of those drugs.

Thanks again.