I have decided to take anticoagulants... - Atrial Fibrillati...

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I have decided to take anticoagulants, I am worried of how my body will respond

Slattery profile image
51 Replies

I finally after 3 years of resisting taking anticoagulants decided to take Eliquis which my ET recommended. I am worried about side effects, brain bleeds and long term health. I live in the US where anticoagulants are not the first choice of treatment for Afib. I am in good health other than Afib, 71 year old female. My sister 76 years old had a Mimi Stroke which helped me make this decision. I would appreciate hearing how anticoagulants have effected your life and if you are on taking Eliquis, how is it working for you. Thank you all for you knowledge and great support over the years.

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51 Replies
10gingercats profile image
10gingercats

I have taken Eliquis/Apixaban for c 3 years .No problems whatsoever .I have read that some people do have some issues with it but you will not know how it affects you until you try it.My own health re. heart is pretty uncomplicated so perhaps that has something to do with it.

jeanjeannie50 profile image
jeanjeannie50

Anticoagulants may have a few risks associated with them, but without you could have a major stroke. Having worked in a nursing home and seen people who cannot speak, move or eat (fed through a tube in the stomach) that is more of a dread for me! I'd rather take my anticoagulant than risk ending up that way.

You're scared to take them and I'm scared not to take them. Hate taking tablets of any kind but sometimes it just has to be done!

Jean

Slattery profile image
Slattery in reply to jeanjeannie50

Jean,

Your support and knowledge of Afib has really helped me over the years. Thank you so much

rosyG profile image
rosyG

It’s been brilliant for me. Don’t know I am on it! There are a few interactions with other drugs but you soon get to know these and can always check with pharmacy if you have to take something new. It reduces stroke risk by about 60 percent.

Jlaine profile image
Jlaine in reply to rosyG

I think I have seen ads that say it decreases chance of stroke by 97%???

BobD profile image
BobDVolunteer

Well done at last. Now you have some protection from that life changing stroke. Regarding how it affects one, I have been on warfarin now for fifteen years with zero problems. The occasional cut or minor gash whilst working on my machinery has never been an issue other than a slightly longer time to stop which can be annoying if I am busy and have to go and put a plaster on. I do not bruise any more than my dear wife who has never needed anticoagulants and feel the mellow happiness of having done something good to protect myself.

Slattery profile image
Slattery in reply to BobD

Bob, thank you for all the knowledge you bring to this site. It took me some time to realize anticoagulants are the best solution for Afib with your help!

Jlaine profile image
Jlaine in reply to BobD

No One has mentioned hair loss or thinning??

BobD profile image
BobDVolunteer in reply to Jlaine

Not entirely common although brittle nails can be added to that list. Small price to pay really. Nobody wants to end up a drooling vegetable.

Jlaine profile image
Jlaine in reply to BobD

I along with many others take hair skin and nails supplement to counteract some of hair thinning. No One seems to know does this affect the action of my blood thinners?? Also just found out that when your on now's or warfarin your high and hit drop..I am now taking an iron supplement as my levels were bottomed out. And I wonder if iron also undermines the effect of elliquis.?

Mary-miles profile image
Mary-miles in reply to Jlaine

You are right .Hair loss is not listed as a side effect however it’s a known fact just ask people who are on them.I also take supplements for hair and nails and again no one knows if there are any interactions with anti coagulants.I see my E/P in May and will ask him.

No problems here, with some benefits compared to taking warfarin.

MarkS profile image
MarkS in reply to

...and some disadvantages!

Chris1945 profile image
Chris1945 in reply to MarkS

Hi Mark, My doc has agreed to take me off warfarin and put me onto apixaban because I'm vegetarian, bordering on vegan and I have to severely restrict all my favourite veggies like kale, broccoli, spinach etc., which trust me, is a real challenge for me! So I'd be interested to know what disadvantages you experience when taking apixaban? Thanks. x

MarkS profile image
MarkS in reply to Chris1945

Hi Chris, I don't take apixaban, only warfarin. I have a lot of veg in my diet. Typically I'll eat lettuce, 2 sticks of celery, two tomatoes, a whole pepper and broccoli/spinach every day and I don't have a problem with warfarin. The key is to have a consistent amount of Vit K/K2 every day. It's not necessary to exclude anything from your diet.

If your INR on warfarin is in the 2-3 range more than 70% of the time (easy for most people with a Coaguchek) then it performs better at stroke prevention than the NOACs. In real world trials (not sponsored by the manufacturer) warfarin has produced better results than the NOACs. It also seems to have fewer side effects and is more tolerant of forgetting a dose.

It does however require more engagement than with the NOACs where you just pop a pill, though I see that as a positive.

rosyG profile image
rosyG in reply to MarkS

Higher risk of IcH as you know Mark!!

MarkS profile image
MarkS in reply to rosyG

Not in real world trials, Rosy! In this trial comparing warfarin with NOACs:

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

there were 6% more hemorrhagic strokes with warfarin though this was not statistically significant. On the other hand there were 22% more deaths, twice as many Ischemic strokes and 50% more TIAs with NOACs which were statistically significant!

rosyG profile image
rosyG in reply to MarkS

Retrospective data not randomised!

Jlaine profile image
Jlaine in reply to MarkS

WOW! Than how can they say noacs are safer??

Chris1945 profile image
Chris1945 in reply to rosyG

IcH??🤔

rosyG profile image
rosyG in reply to Chris1945

Intracranial haemorrhage

Chris1945 profile image
Chris1945 in reply to MarkS

Thanks for reply Mark, my problem is that because I love all the dark green stuff, especially kale, spinach, parsley/coriander/rosemary etc, I could happily chomp on a big plateful of them at every meal...yes, even breakfast! So I ate it in great abundance and I miss it and who knew that another big favourite, cauliflower, a non-green veg was full of vitamin K too!? But I absolutely take your point re warfarin possibly bringing better results, my one concern with Apixaban of course, is that one can't be sure if one's blood is too thick or too thin, it's all a bit of a minefield really.....x

Thomas45 profile image
Thomas45 in reply to Chris1945

I don't restrict any food, just adjust the dose of Warfarin.

Chris1945 profile image
Chris1945 in reply to Thomas45

Hi, I guess you must check your own INR at home to be able to adjust? Because mine has been a steady 2.6 for the last couple of checks I only get my levels checked every 2 months at the surgery ....

Thomas45 profile image
Thomas45 in reply to Chris1945

Yes I bought my own Coaguchek monitor and check at home.

Tantaanna profile image
Tantaanna

Five years and no problems- agree with Jeanie afraid not to take. All the treatments for AFIB and then a stroke- no thank you

I do have had aunts and uncles with strokes back in the day when there was less treatment. Family history of heart issues

CDreamer profile image
CDreamer

The only way I ave been affected is being able to stop worrying about stroking out. I had a TIA a few years ago & my first thought was thank goodness I take Apixaban (Eluquis). I would not know that I was taking them, if I didn’t know I was. I don’t bleed from cuts more than I used, just needs a little longer with pressure. I don’t bruise more - & I always bruised easily but I haven’t noticed a difference.

I think the US has been way behind Europe in accepting this prophaltic treatment which can help prevent AF strokes.

I do hope that you will find similar peace of mind.

seasider18 profile image
seasider18 in reply to CDreamer

Why do you think that America is so behind in this respect ? Usually they and Big Pharma are in the forefront of new drugs and procedures.

Although they seem to like to trial new procedures on patients in other countries :-)

CDreamer profile image
CDreamer in reply to seasider18

Because when they were 1st launched in the US there were some mistakes made in dosages, especially for older people resulting in some unnecessary bleeds and many class action claims - resulting in a very cautious approach from doctors. I think now the dosages has been revised and there is much, much more evidence there is less fear. Give a dog a bad name.....

Also adverts for both drugs and class action suits are not permitted in Europe so there is much, much less awareness of the early bleed scenarios. I used to be very, very shocked at US TV ads around drugs & class actions. Although there is a developing ‘sue’ culture here, it is much less and we have far more advertising regulation.

BobD profile image
BobDVolunteer in reply to seasider18

Blame the lawyers.

Thomas45 profile image
Thomas45

I love Warfarin. It gives me peace of mind. I have permanent AF, although it's mainly asymptomatic, so better in some respects than random long fast episodes of Paroxysmal AF. I test my INR myself, reporting by email to the Arrythmia nurse.

Slipware profile image
Slipware in reply to Thomas45

I home test too, can’t be beaten!

daveeb profile image
daveeb

Hello, Slattery, if I may call you by that name ? As you may have seen in earlier posts, in the UK the aspirin doesn't get used, but there are othe ones used. My first brain injury was severe happening in 1985. I was given aspirin. Then, in 2013 I had a subdural haemorrhage. The aspirin was stopped and I was given Clopidogeral. ( I think the spelling is correct). However, a few months later I had a TIA and very soon later I had another one with the onset of hypertension which led to atrial fibrillation. Later the Clopidogeral was changed to Dabigatran Etexilate. Also called Pradaxa. I never have any problems with Pradaxa and think why I was taken off the other medications was more preference of the cardiologist. I'm still taking the Pradaxa, still with no problems. I hope that it stays that way. Anyway, take care and good health to you and your sister. Dave x

Nan1 profile image
Nan1

I have been on Warfarin since 2014. Am considering changing to one of the new anticoagulants as the only problem I have is that I stress terribly if my INR goes above 3. Other than that no problems at all and like others have said it gives me some protection against a stroke.

BobD profile image
BobDVolunteer in reply to Nan1

About five years ago we had a talk at conference patients day from an expert in INR testing. He stated that there was little additional risk of bleed up to INR 5. Remember many people with stents or other cardiac issues work on 2.5 to 3.5 as a range not 2 to 3. He also recommended this higher range to ensure better coverage in the event of variation.

SO stop worrying in other words. Nan

Nan1 profile image
Nan1 in reply to BobD

Thanks Bob, I’ll do my best but cant promise I’ll stop fretting. My 14 year old Grandson has an ablation this summer for SVT. More worry. Kind regards

Morzine profile image
Morzine

Ooooo I think they are life savers, they reduce the risk of a stroke and so I take mine willingly.....never had issues with elequis in the past year I’ve taken it.....If my cat scratches me I clot easy enough........

I know tablets taking aren’t what we all want, I’m on four now, befire I was on one....but it’s balancing it up and the good this does is mega.....don’t worry slattery, after a week or so you won’t think about it anymore.....

Sue

Tapanac profile image
Tapanac

No problems with Apixaban other than remembering to take the evening one. After just taking Rivaroxaban once a day with my evening meal, it is taking a little while to remember that Apixaban is twice a day (12 hours apart) and I'm still trying to see which are the best times for morning and evening as I've only been on this for 2 weeks and was on the other for nearly 2 years. Apixaban, 'I'm told', is supposed to be the best for non-bleeding, especially in the brain and tummy, but here on the forum no-one seems to have much of a problem with that. As most say, it is better to have a little bleed than a stroke. All the best to you and also to your sister.

Buffafly profile image
Buffafly in reply to Tapanac

I had mild bleeding problems with Rivaroxaban and some dreadful bruises as well as hair loss, much prefer Eliquis.

Auriculaire profile image
Auriculaire

I too was reluctant to take an anticoagulant and my cardiologist said I did not need one despite being female and 66 as I had no other comorbidities . Then about five weeks ago I had a suspected TIA though the brain scan has shown nothing. I had weakness in my right leg , increased clumsiness and when I tried to write it was all squiggly. These were the only symptoms and the leg weakness went quickly. My GP put me on Apixaban immediately and cardiologist said even though brain scan showed nothing it was still probably TIA. I have had no problems so far though I have noticed that the scratches I get on my arms when gardening are far worse and the scabs last longer. Although I have not had an attack of afib since last October I had a few ectopics a week ago but being on the anticoagulant I felt far less anxious about them precipitating an attack .

Hi been on it for a year plus no issues still play sport and it's the safest anticoagulant. Try it you dont want a stroke !

MarinaT profile image
MarinaT

Hi. I attended my brother in law's funeral last week. He had a massive stroke from undiagnosed AF and died 12 months later. He was not anticoagulated. I am on Apixaban and do not notice any adverse symptoms. I am so grateful to have been diagnosed. Like Bob, I feel anticoagulation is vital.

AIW58 profile image
AIW58

I was started on it prior to my ablation 2 weeks ago. No side affects I'm aware of.

Not sure if I will continue it I'll discuss that with my EP. If he advises it I'm fine with that. (I'm 59, with lone AF, no predisposing factors)

The link below is a comparison of the NOACs.

ausdoc.com.au/news/which-no...

sjanee11 profile image
sjanee11

I was on Eliquis for 7 months following my ablation for a pulmonary embolism. Other than heavy menstruation, I couldn't tell I was on it.

Slipware profile image
Slipware

I’ve been on Warfarin for 7 years now, I decided a year ago to give Apixaban a try, I lasted 6 months, upset stomach every day, and not knowing what was happening in my blood prompted me back to warfarin, no side effects, I do home INR testing so I can keep it between 2-3 and know by now what is acceptable to eat etc. It’s all personal preference what anticoagulant one takes.

avrambaer profile image
avrambaer

It appears that I may be an outlier here. I had a poor experience with warfarin. It resulted in internal bleeding, caused a blood clot to leak in my eye and left me with a pancreatitis. I've considered Eliquis but my drug plan will only cover it as a Tier 3 drug at a co-pay of $455/month. Considering my personal experience with an anti-coagulant no cardiologist has suggested resumption of anti-coagulant therapy. After having my eye surgery (restoring my eyesight) I'm reticent to resuming anti-coagulant therapy. The statistical incidence of stroke without other co-existing neurological risks without anti-coagulant therapy is statistically insignificant (look at the NIH research). The drug companies have consistently manipulated studies to promote usage of their products. It sounds good to reduce the incidence of stroke, but that's taking a statistically insignificant (>5%) figure to practically zero and talking about ratios. If a patient has collateral neurological or cardiac conditions then one should consider taking anti-coagulants. Otherwise it's a flip of the coin. FYI the only way to determine side effects is to physically take the anti-coagulant medication. If there had been such test, I wouldn't have taken warfatin in the first place. I hope this reply has been helpful. One is not doomed to suffering a stroke if one does not take an anti-coagulant. There is only a statistically insignificant chance of neurological involvement. The adverts would have one think otherwise.

foxglove1 profile image
foxglove1

Agree totally with 10gingercats and jeanjeanie. I have been on Apixoban for over 3 years and have had two or three minor procedures in that time with no bleeding other than I would have had without Apixoban. Benefit against risk. The thought of a stroke fills me with horror.

all the best

Jlaine profile image
Jlaine

I took a bad fall in Feb. Slipped on ice and fell hard on my back and hit my head hard. Had extreme pain in abdomen and rt side. Went to hospital by ambulance. They did cat scan of head. I had a hematoma the size of a cantelope. I am on elliquis and am 72 yrs young! They also took lower back xray as well. Sent me home and told me to take TYLENOL! I was in excruciating pain and it hurt to breathe. My cat scan showed lots of blood on the outer. aspect of skull which eventually weeks later reabsorbed. Well 7 days later after living in a chair in pain my breathing got worse. Ended up in urgent care. They took upper back xrays and discovered I had blood in my thoracic and my pulse was 126. I have Afib also.They sent me back to hospital. Went to different hospital. They have me morphine for pain immediately and admitted me! 5 days in hospital. Had chest drained 1.1 liter of blood. Went home next day and my blood Dr and iron did a nose dive. I am still dealing with more blood in my thoracic area and will probably have it drained again. Moral to the story is donot fall hard if you are on a noac or warfarin. I am still dealing with back and right side pain and it as been 2 mths!! Guess we don't.bounce back as quickly when we get older. Was unable to go to apts without someone driving me. Walked with a walker due to pain,weakness and shortness of breath.Friends did everything from grocery shopping to housecleaning etc for about 3 weeks.

barbly1 profile image
barbly1

I am in the US, and have been on Eliquis for a year, starting at the time of my first episodes of afib, and then ablation last summer. I have had no issues with it at all, no side effects of any kind, and am happy to have such strong protection from stroke.

djmnet profile image
djmnet

No effects whatsoever on this 74 year old female.

dave1950 profile image
dave1950

Zero side affects that I am aware off after two years. Maybe there are some but how do you know it's not a side affect of ageing. I guess I could attribute scratches bleeding more easily to it but your skin gets a bit like that with age.

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