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new diagnosis advice on blood thinners please

Timetraveler67 profile image
49 Replies

I had my diagnosis only 4 days ago after an echocardiogram. I was prescribed Apixaban 5mg twice a day which are making me feel incredibly ill so I haven’t taken today’s dose. I intend to ring my surgery Monday morning to ask if there’s another medication blood thinner I could take instead with less side effects. Reading through posts here I notice aspirin is mentioned and I would like to know if this is an option. Please can you help advise me I’d be so grateful To you all thank you

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49 Replies
fairyfeathers profile image
fairyfeathers

I was diagnosed with atrial flutter in June this year. I was put on Apixaban and could not tolerate it due to gastric problems. I asked to try other anti coagulants and was put on edoxaban, which I have had no problems with. I would just mention that it’s important you inform your GP of your actual weight as the mg prescribed will be governed by this. I am on 30mg once daily. There are other anticoagulant to try. It’s important you have protection from the risk of a stroke. Aspirin, I was told, was not an option. So a chat on Monday with your GP on the way forward very important. Good luck.

Timetraveler67 profile image
Timetraveler67 in reply to fairyfeathers

thank you so very much for replying to me and for the helpful information. I am 68 and weigh 9 stone. I hope I can get a face to face Drs appointment tomorrow but usually it’s a telephone consultation which I always struggle with explaining things over the phone but I’ll do my best. Thank you again

fairyfeathers profile image
fairyfeathers in reply to Timetraveler67

Perhaps you could write down what you wish to discuss with your GP prior to making the call so you are prepared - the most important thing is to explain the reason why you cannot tolerate Apixaban and ask to try an alternative. I take edoxaban and if your body weight is less than 60kg or lower the recommended dose is 30mg. There’s lots of info on the AFA site . All the best to you.

No - Asprin is not an effective option! I take Warfarin successfully and have done so for nearly 13 years. There are a range of NOAC's, suggest you get onto AFA website and look at advice on there and//or go to NICE website.

John

CDreamer profile image
CDreamer

Hi

Aspirin is not advised for stroke prevention for Lone AF generally in the UK because it's not an anticoagulant. Some people with other conditions may take Aspirin for other reasons such as CVD (cardio vascular disease) or because they have replacement valves or they make take both an anticoagulant and aspirin - but know that aspirin is taken for a different reason ie: because it is an antiplatelet, not an anticoagulant.

I have to say that it is unusual but not unique to read of reactions to Apixaban on this forum. In what way is it making you feel ill?

Other anticoagulants are available but in my experience I found Apixaban the most benign and studies show it as the most effective at stroke prevention. (I had great problems with digestive issues with Dabigatran which was the first DOAC released) but as always, everyone reacts differently to different meds so ask your GP for an alternative.

You may find this fact sheet from the AFA helpful:-

api.heartrhythmalliance.org...

Quote:- In clinical trials, apixaban was shown to be at least three times more effective than aspirin in preventing AF-related stroke.

Anticoagulants:-

Wafarin - requires regular INR monitoring

DOACs = Direct Oral Anti-Coagulants are dabigatran, rivaroxaban, apixaban and edoxaban.

Unlike warfarin, they do not require blood tests as they are unaffected by dietary intake, lifestyle or general health. DOACs also interact less with other medications.

Hope that answers your question.

Timetraveler67 profile image
Timetraveler67 in reply to CDreamer

thank you that is helpful information I am going to see if I can speak to A Dr at my surgery Monday morning as the apixaban Are given me a headache and feeling so fatigued with the worst stomach ache ever. Because afib is a new diagnosis for me I really appreciate your reply as I’m scared of a stroke. I have m.e. Cfs and sensitive to a lot of drugs and also foods, I think that’s why I have a intolerance problem with drugs that others don’t have a problem with it’s very frustrating. Thanks again for replying to me

Autumn_Leaves profile image
Autumn_Leaves in reply to Timetraveler67

Not much to add to the helpful advice from the others, just to say I’m a new diagnosis and I also have ME/CFS. I was advised by GP that I didn’t need an anticoagulant (yet) as my score was low, I was already on a beta blocker for my ectopics, not that they do much. I’ve been referred to an EP but it’s a very long waiting time. It’s all a bit much, getting used to the reality of living with AF, plus other long term conditions.

Timetraveler67 profile image
Timetraveler67 in reply to Autumn_Leaves

thank you for your reply, yes it is a lot to go through my score was 3 and I’m feeling overwhelmed as I expect you are as well even though you had a low score, I have been waiting 3 months to see a cardiologist and just got my appointment for The end of November, it’s a telephone appointment not a face to face butI do know we have to be grateful in these times of change with nhs I am very grateful but would prefer to actually see my consultant. I hope you get your appointment soon thank you again for replying to me

Lupaal profile image
Lupaal in reply to Timetraveler67

Have they given you omeprazole to take with it? I believe that helps with the digestion problems, I take 20mg evert day with my apixaban.

Mrsvemb profile image
Mrsvemb in reply to Timetraveler67

I also have huge problems with intolerances to both foods and drugs. It is ongoing for me. I have had all of the anti coagulants, Apixaban, dabigatran, riveroxaban and Edoxaban. I even tried warfarin in desperation. In my case I get severe nausea and feel generally unwell, maybe after one month, 3 months or more.

I had a consultation with a haematologist and put it to him that perhaps I could alternate between Apixaban and dabigatran. He agreed and wrote to my GP. That is working for me so far. Of all of the five anti coagulants I seem to tolerate dabigatran the best, though I do find the hair loss is worse with that.

Aspirin is no good for AF, so would not give you the protection from stroke needed.

I am finding more and more intolerances. This year I discovered that I am intolerant to both dairy and soya. I have been intolerant to gluten for many years. If I avoid all three completely, then I don’t get any AF episodes.

Medication is a big issue for me. I have to have certain brands, which at the moment is proving impossible because of shortages of certain drugs.

Definitely put in a call to your GP and keep at it until you find an anti coagulant that suits you best.

Good luck and let us know how you get on.

Val

Peacefulneedshelp profile image
Peacefulneedshelp in reply to Mrsvemb

I’m in your camp as well. I am intolerant to many food additives so if I drink a flavored water I will go into Afib. I do not have pathways to eliminate chemicals and I know this from a DNA test I took several years ago. I cannot tolerate medications either so its a hard thing to decide.

bassets profile image
bassets

I hope you and Autumn Leaves don't gat too wound up with everything that's going on. When I was first diagnosed I panicked and it took me a long time t settle down and be able to think about my situation clearly. I found mindfulness a great help.

I was able to see my local consultant but because my af became very troublesome, in the end I saw an Electrophysiologist privately and had an ablation last year which has helped a lot.

Although it was not ideal seeing that doctor privately, it was the best thing I could have done, So this may be an option for you. Try not to worry as that only makes everything worse, and as fairyfeathers says, write down your questions as it's so easy to forget what you want to say.

Good luck and best wishes.

Pedroboy profile image
Pedroboy

I'm on Rivaroxaban. Do a comparison of the two. There may be some studies on side effects. Take into account whether you've had a recent vaccine which might also be causing problems.

secondtry profile image
secondtry

Possibly discuss with your medics whether the use of clopidogrel is advisable. I was prescribed it for a while when I had a DVT 20 years ago and my wife is on it following a stroke 2 years ago. The learned members here no doubt know why it is not discussed more.

CDreamer profile image
CDreamer in reply to secondtry

Clopidogrel is again an anti-platelet, similar to asprin - excellent for DVT busting but no good for AF related stroke prevention.

secondtry profile image
secondtry in reply to CDreamer

Woah....not sure why my wife was given it, have you any more info on '..no good for AF related stroke prevention' as my wife may wish to question the purpose of her prescription. Is it because it is not strong enough to deal with the bigger clots that can occur in the atrium?? Thanks.

MarkS profile image
MarkS in reply to secondtry

Clopidogrel is of little use for stroke prevention for AF. See:

ncbi.nlm.nih.gov/pmc/articl...

Patients on Clopidogrel had over twice as many strokes as those on warfarin and high bleeding rates. It is possible your wife was given the clopidogrel for other reasons, but, I agree, it should be challenged!

secondtry profile image
secondtry in reply to MarkS

Big thanks Mark will see what my wife wants to do.

Speed profile image
Speed in reply to secondtry

I’m not sure that is the case as I understand that his wife has had only a stroke and no AF. In that case, Clopidigrel is the recommendation I believe (but still worth questioning). As an example to clarify which is better for none AF Stroke risk and AF stroke risk, I had a TIA (mini stroke) back in 2017 and was immediately put on Clopidigrel “for life”. Once I was diagnosed with AFlut, the Clopid was dropped and I was started on Apixaban. After my first Ablation was deemed a success, the Apixaban was dropped and I was put back on Clopid.

7 mths later, as soon as it was identified that the AFlut was back, I was switched back again to Apixaban. After the 2nd ablation it was deemed the AFlut was resolved but I started to show symptomatic of AF. I was therefore left on Apixaban. As I’m now PAF, though not had any symptoms of AF for several months, I will still stay on Apixaban. Should I have another Ablation that is deemed successful, I’m advised that I would switch back to Clopidigrel.

secondtry profile image
secondtry in reply to Speed

Thanks Speed, that is all very useful.I clearly need to do more homework!

CDreamer profile image
CDreamer in reply to secondtry

See my reply above and link to the AFA website info sheet. It’s because it’s an anti-platelet not an anticoagulant. However, US advice sometimes varies:-

However, the role of antiplatelet therapy, specifically aspirin in low-risk patients or as an alternative to oral anticoagulation, remains controversial. The most recent US guidelines conflict with the European guidelines, which do not recommend antiplatelet monotherapy for stroke prevention irrespective of stroke risk. The aim of this review is to summarize published studies that question the role of aspirin in preventing strokes associated with atrial fibrillation. Overall, aspirin is found to play a limited role in the prevention of stroke in patients with atrial fibrillation and is associated with a similar risk of hemorrhagic events compared with anticoagulants. The benefit of dual antiplatelet therapy as an alternative to oral anticoagulation requires further study.

pubmed.ncbi.nlm.nih.gov/291...

The view from here in the UK is that antiplatelets have very limited value for prevention of AF stroke related and much higher risk of gastro bleeds so the risk:benefit assessment would be compromised.

There are always caveats.

secondtry profile image
secondtry in reply to CDreamer

Thanks CDreamer. Very useful. I really need to get a grip of this prior to quizzing my cardiologist in December for my biennial check-up.

oscarfox49 profile image
oscarfox49

Aspirin is nothing like as effective in preventing blood clots forming and resulting in a stroke. I know as this happened to me two years ago.

Apixaban is relatively free from side effects compared to most drugs, the ones listed being the dangers of bleeding, giddiness and nausea, often the result of anaemia occurring which is not something that would occur in a couple of days.

You don't say what is making you feel so ill, but first it may not be the apixaban at all, and secondly, side effects could be short lived. You really do need to talk this through with your consultant. What other medications are you taking, for example?

Brizzy50000 profile image
Brizzy50000

I've been on rivaroxaban now for 4 years after my ablation, i also take omeprazole as well and can honestly say I have had no problems.

Good luck and hope you get it sorted soon

Murdy1 profile image
Murdy1 in reply to Brizzy50000

Is it a fact Omeprazole should only be taken for a definite period. I found it very effective but my GP told me to come off it after I felt better? Tom

Just to add about the Aspirin. When I saw the local cardiologist after a trip to A&E about 5 years ago, I was taking Aspirin. He put me on Rivaroxaban and in his own words said "we now know that Aspirin doesn't work". 20 mg of Rivaroxaban once daily after evening meal seems to work fine with me. Good luck with your surgery call.

LadyLawson profile image
LadyLawson

I am on Edoxaban with no side effects. You need to be on a blood thinner and aspirin is not effective.

wilsond profile image
wilsond

Please stay on your anti coagulant until you are able to speak to your prescriber

kkatz profile image
kkatz

I have been on edoxaban for 5 years no probs.However I do take omeprazole for my hiatus hernia.I was very anxious about taking an anticoagulant when first diagnosed but I really don't want to risk a stroke.

Buffafly profile image
Buffafly

Terribly ill in what way?

Buffafly profile image
Buffafly in reply to Buffafly

AF itself could be making you feel ill if you are still not in NSR.

Gtish profile image
Gtish

If available in your country, Watchman may be an effective alternative for you. Once placed in your left atrial appendage (where 90% of all clots are formed) you can kiss your anticoagulants away and just take baby aspirin. Ask your EP.

Letofeyd profile image
Letofeyd

Apixaban prescribed by a hospital doctor after a failed cardioversion, made me feel terrible - really terrible - so I came off it, too.

My electrophysiologist said it was overkill and to return to Sotalol and aspirin, which I had been on with very few episodes and feeling fine until that one event.

Talk to them again. There are many other choices than Apixaban, which seems to be condidered quite a big hitter drug.

Tapanac profile image
Tapanac in reply to Letofeyd

what do you mean by a big hitter drug please?

Letofeyd profile image
Letofeyd in reply to Tapanac

My electrophysiologist said it was overkill for my symptoms at that time. He said it is not a drug that should be taken long term and it was too soon to start that sort of medication, given my very infrequent paroxysmal AF.

Of course, your medical situation night be much different to mine.

Tapanac profile image
Tapanac

I am on apixaban as I was told it was the kindest anti-coagulant to the brain and stomach. (I had had brain tumour surgery so they had to choose what was best). I was originally put on rivaroxaban, but found thst I kept getting UTIs and blood in urine.

Good luck and hope you are settled soon.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

ASPIRIN does not work the same as Warfin (old) and the new anti-coagulant. I take PRADAXA (2 times day 110mgs) which has an antidote.

In the case of a fall or accident the antidote could be used.

Its latest research has a warning of 33% risk of heart attack.

So risk of another stroke caused by AF and Thyroid Cancer or internal bleeding.

These anti-coagulants stop clotting. Hence the risk in AF of forming a clot which cold travel anywhere.

If haemoglobin falls then internal bleeding would be a suspicion.

There are always risks in medication and unfortunately you have to make decisions - which is sometimes against the medical team.

I used my power to prevent me having radio active iodine which is an automatic subsequent after thyroidectomy. I decided that I had a great surgeon (2nd different operation by him) and it was low risk. I said no thanx.

Again althugh I got low in TSH I refused to maintain TSH suppression. Against

the encrinologist in my team.

Now I read that low risk patients do not need RAI or SUPPRESSION.

I wish to be the manager of my own health.

UK has a different stance on TSH. But they should read the top Thyroid cancer man who guides us my surgeon and I to hold a TSH level of 2.0.

GARY CLAYMAN who has written The Atlas of Head and Neck Surgeries. I have read my operation.

I am a survivor of low risk for receiving no radiation after a removal of breast carcinoma in a milk duct of right breast.

My surgeon in my public hospital is a general surgeon but honestly he takes the care which is necessary to do the task of removing all cancer bearing in mind that it may have spread. He took 12 lymphs and 2 lymphs were affected.

Meds or no meds there is a risk unfortunately.

I am watching carefully any further warnings on my drug PRADAXA.

Read all about your drugs.

I am on Diltiazem 120mg am, Bisoprolol 2.5mg pm to control my rapid, persistent H/R day. It night ir stays at 47. Also controls my BP.

Take care.

The National specialist suggested to change to River..... if I wish to change. But PRADAXA has a 110mg lower dose which I am on.

cheers JOY. 73. (NZ)

Timetraveler67 profile image
Timetraveler67 in reply to JOY2THEWORLD49

dearest joy thank you so much for sharing your battle your on, it has taken me 6 years to get my thyroid levels at a decent range I have autoimmune thyroid disease. You sound like you’ve been through so much yet sound very strong minded as like you so rightly say you take control over what goes into your body. I appreciate your replying to me as it’s it’s nice to get a possitve reply to my question. God bless x

BlueINR profile image
BlueINR

Call your doctor's office today about the medication.

Timetraveler67 profile image
Timetraveler67 in reply to BlueINR

As I mentioned in my first post on here yesterday I said I would and certainly did In fact actually go into my dr surgery first thing this morning ( Monday) I explained everything to the receptionist and asked to see/ talk to a Dr about my meds. Was told I would be contacted later in the day but no one rang me at all which doesn’t surprise me one bit. I’ll ring them in the morning and hopefully they’ve arranged an appointment. Thank you for your concern But if I say I’m going to do something I definitely do it as I do know, and do understand the urgency of the situation

fairyfeathers profile image
fairyfeathers

Really not good enough and disgraceful that you did not get a call-back re your issues with taking the anticoagulant. I wish you luck contacting the GP today as it’s essential you restart your meds.

Timetraveler67 profile image
Timetraveler67 in reply to fairyfeathers

quick update- I went back to my surgery today and different receptionist so had to explain it all again, she looked at her computer and told me Duty Dr wanted me to make an appointment with the pharmacist. If I had not gone back to the surgery I doubt I would have got call as the receptionist looked bewildered about it all. I Made an appointment to see the pharmacist Friday morning. Thank you for your concern x

fairyfeathers profile image
fairyfeathers in reply to Timetraveler67

Not good enough, I feel your Surgery has let you down. It’s the same everywhere unfortunately. To actually see a GP at my Surgery is a 6week wait. My EP wanted my Surgery to give me an ECG if my arrhythmia kicked in and E-mail results to him. My Surgery is only 10 mins away. Well I tried that recently and was told by my Surgery to go to A&E which is 50minutes away. By that time I would prob be back in sinus rhythm plus hanging around A&E taking up their valuable time is pointless.

I am concerned you are currently not taking an anticoagulant . Take care x

Afibflipper profile image
Afibflipper

I’m not medically trained so please see the Drs - I don’t think aspirin is as potent as the apixaban but can still gauge gastric bleeds. I am on Apixaban twice daily having not tolerated Riveroxaban (strangely I had taken Riveroxaban for 6 weeks a few years ago with no problem). If you’ve stopped taking your Apixaban you need to contact your Dr ASAP

Timetraveler67 profile image
Timetraveler67 in reply to Afibflipper

I contacted my Drs surgery first thing Monday morning ( actually went in) explained everything and asked if I could speak to a Dr soon as possible I even showed her the hospital letter, the receptionist told she would contact the duty Dr on call and promised to ring me later, I did not get a call. I returned Again to the surgery today and again explained everything all over again the receptionist looked at her computer and said the Dr wanted me to make an appointment with the pharmacist at the surgery. So that’s we’re Im at, they made an appointment with the pharmacist For this Friday the 14th at 8.30am. Just want to add that I never intended to take aspirin that I was just Generally asking questions also I do know how important it is to take a blood thinner and I battle every single day to get the help I need from medical professionals not just with the afib but everything else so now I just except that since covid the nhs is overwhelmed and I have to be grateful for what we have. Thanks for your concern and for your reply and I wish you well.

Hydroplane profile image
Hydroplane

I have atrial flutter, have been on • Eliquis 5 mg oral tablet twice a day as an anti-coagulant for 2 years. No negative reaction, Its expensive without insurance i think. Good luck. had some terrible heart meds before and waiting to long before complaining so definitely speak up.

fairyfeathers profile image
fairyfeathers

I wish you well with your pharmacist appointment today. X

Timetraveler67 profile image
Timetraveler67 in reply to fairyfeathers

dear fairyfeathers I’m worried because the pharmacist wanted to do blood test to check my kidneys before starting any blood thinners. She rang today and told me blood results show low creatinine levels and until she speaks to a specialist I’m not to take them. I’m having extensive dental surgery on Wednesday next week so I guess if I was on them I would have needed to stop because of the risk of bleeding. Thank you for asking how it went with the pharmacist I’m actually very impressed how she went into detail about everything also I really didn’t know they was able to do so much, she made other appointments for me, write a letter to the cardiologist etc I didn’t know they did these things I thought it was just medications they dealt with. I hope you are well as you can be and I want to thank you again for asking after me x

fairyfeathers profile image
fairyfeathers in reply to Timetraveler67

I’m pleased the Pharmacist was helpful. Thank goodness for them as it’s so difficult getting an appointment with a GP. I am having my bloods done in a couple of weeks after being on anticoagulant since July. I had my bloods done before I started on them and all was ok. So it’s good you’ve had your bloods done flagging up your creatinine levels. Your specialist will decide on the way forward . As for dental work. My dentist is happy for me to continue with anticoagulant during treatment but I would need to be on antibiotics prior to start of any treatment. So it would be a good idea to have a chat with your dentist to see what he/she would want you to do in respect of anticoagulant meds.

At least you are further forward than you were. I hope things settle down now, they sort out your meds making things less scary. Take care x

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