Hi.. I was on here a few days ago but didn't get too much what's going on. I am not the patient- my mom is. She is quite healthy and has only had two episodes of AFib and each time was during anxiety with sinus infection and another time with anxiety and bug bite infection. The first time they blamed Sudafed as the culprit so things seemed fine and she didnt need blood thinners. On July 11, two weeks ago she had the second episode ( nine months after the first). Anyway,she is on a heart monitor until August sixth. The first episode she was also and results came back great. My fear, and it's interfering my life and health, nightmares, panic etc.. It's the eliquis. At drugs dot com there are terrifying reviews. I am desperate for comfort over this. If eliquis ever hurt my mom or WORSE I'd be beyond devastated. I am praying that the anticoagulant is temporary like last time but I'm still too scared. I admit I'm an unhealthy amount of scared.
can anyone out there ease my mind from those eliquis horror stories? Please.
I'm so sad..
thank you for
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MishaKitty
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Together with many others on this site I am still here after several years of taking Eliquis/Apixaban.I feel sure others will soon reassure you that your fears are unfounded.
Discuss your fears with your mothers GP and hopefully he/she will also be able to reassure you.
Apixaban is a safe medication and has been used for many years now by many people.
On the drugs website there are so many people saying that it killed their loved ones from brain bleeds.. even after a few weeks. Her GP tried to reassure me, but I can't forget the reality of what those people reported.
Thank you very much for replying. I'm not doing well. My mom is doing well. It's me
I noticed on her wrist that there is now a small bump on her vein. I don't know if that's a side effect or what.
Firstly, the people reporting on the website about bleeds are not a random sample-there are many more people who use Apixaban without any problems; these people will not, predominantly, post on a website to say that nothing has happened to them. So there is selection bias in operation here. The best way to make an estimate of the risk is to look at the manufacturer's data on bleeds.
Second, and related to the above, you need to set the risk of a serious bleed whilst on Apixaban against the risk of a stroke if your mother does not use the medicine. Doctors will only prescribe Apixaban if they consider the former is outweighed by the latter risk.
I started Apixaban earlier this year after a period of about two years when I was advised to start it but did not because of worries similar to yours above. So I know exactly what you are worried about. One thing you could do is to ensure that your mother is fully clued up about what activities to avoid or take extra care with whilst taking this medicine.
Hi Jpot, I'm not for that particular vaccine either, but please be nice to people especially on a health support forum. So many of us are scared, some very ill, some vulnerable and i think we should be gentle.
I agree with you im sure about the vax... perhaps we should stick with places like Twitter to discuss that 👍
The other side of the story needs to be proclaimed on every site on the internet. It's being censored! What's that tell you? This is life or death material. I feel sorry for people who listen to only the MSM.
I don't care what they do. I have a right to my opinion just like everyone else. If they censor me, it just shows they are corrupt. Censorship never stops a movement, it aides it.
Drug addicts? Necessary medication is not considered drug addiction. A fib is a break within your electrical system of your heart read up on it. I haven’t read of anyone taking “drugs” for anything but a serious medical condition.
I see mention of a vaccine in answers to you however I don’t see your initial conversation it seems to be missing. Are you talking about Covid? I got the first ones I’m not doing boosters. I had Covid in March it was like the flu or a bad cold. I’d rather have that than taking continued vaccines. FYI I am from the US president who pushes all the shots and has gotten everything now has Covid so what does that say? Something stinks I agree
Anticoagulation is very important to help prevent stroke which is five times more likely with AF. For what it is worth I have been on a different anticoagulant (warfarin ) now since 2004 with zero issues and the modern ones such as eliquis are considered safer still.
Once again reading things on the internet has not been a great idea. Relax, the doctors have your mother's best interest at heart.
Oh MishaKitty, please be assured. Your mom needs you to be assured. What you describe is called catastrophizing - based on something that hasn't happened. Reading the web can be a scary thing to do. I've taken Eliquis for several years and I'm fine. I didn't focus on the side effects although I read them. Everybody is different.
Her AF seems to be related to anxiety so she needs to be surrounded with calm reassurance and the belief that what the doctor has recommended is what is best for her. That is being helpful. I do not want to have a stroke and I'm sure you don't want that for your mother either. The one thing I am extra cautious about is not to cut myself.
Praying is a good thing to do when we are anxious. Think about your breathing, slow down, take a deep breath. Take those thoughts captive and confront them with reality. Your mom has had great results.
"Worry does not empty today of its sorrow, it empties today of its strength." Corrie ten Boom, Holocaust survivor
Marcyh, your response was lovely. Thank you so much. Mom and I are both Christians and prayer is a daily thing 🙂 she isn't having fear or anxiety surrounding the med as she puts all of her trust in God. Also we love Corrie ten boom!
Anyway, about me and my excessive fear. I've had a lot happen in my life that has made me do EXACTLY what you said and I admit it and take responsibility for it.. you're right, about the catastrophizing. Along with this eliquis stuff I've had a lot of personal tragedies these last couple of years. I've lost 2 friends, one of aneurysm. He has Marfan Syndrome and passed at only 42 yrs old. Also, an old family friend suddenly passed and her son was killed in a car accident... THEN I had a breakup. It's been crazy. I'm going through a time of weakness, I know. I'm trying so hard not to be afraid. I'll do better...I need to trust God to watch over my mom and I have lots of healing to do.
Well you're not lonely now Misha, you have us. Look at all the caring replies you've had!
My Atrial Fibrillation nurse is a very knowledgeable lady and she told me that out of all the new anticoagulants and after her reading a lot of reports, Apixaban (Eliquis) was the best.
Incidentally how old is mum, if you don't mind me asking?
Anecdotal stories are pretty terrifying to be sure. They don't represent the statistics but you definatly don't want to be one. Your mom will probably be on anticoagulants for life. Afib strokes are very serious so anticoagulants are the least of the 2 evils. One thing you can do is get your mom a Medic Alert bracelet that lists the medication, Doctor and contact info.Kinda like a first experience with air turbulence. You eventually realize the plane won't fall out of the sky.
I think if she has AF and her doctor’s assessed her using the clinical algorithim CHADS/HASBLED she is much better on Apixaban (we use the generic name in UK) than not as it is the one essential prophalactic drug to reduce the risk of AF induced stroke.
I hated the idea of taking this drug but after 8 years, no problem. I did stop taking it after AF was treated and had a TIA within months. I couldn’t get back on it quick enough.
I fear stroke far more than a bleed. Bleeds can be managed (even brain bleeds), strokes from clots cannot. The drug sites have to discuss all possible possibilities but they are for the doctors information and they carry the responsibility of advising what is and is not appropriate. Also know that many of us have lived with AF, in my case on and off, for many years and lived well.
Having visited US many times and seen the ridiculous hype around anticoagulants, driven by lawyers seeks class actions I can well understand how fears are seeded and cultivated but as Bob said - stop reading/watching this type of fear mongering. There is a lot more in life to be fearful of.
Please take action to take care of yourself as Marcyh’s excellent reply suggested. We AFer’s need people around us to be calm and Catastrophic Thinking is really damaging.
I was started on Apixaban just over two years ago immediately after an ischaemic stroke. I was still in hospital but still read through the leaflet which was terrifying. For ages I thought I might bleed to death if I bumped my head or fell over! But I have taken it without a break and now think nothing of it. I certainly don't want another stroke! If your mother takes reasonable precautions and doesn't do things which are potentially risky, causing falls or blows, there is no reason she shouldn't do as well with this as millions of others.Unless she has some special condition that causes bleeding and doesn't take other medications which are likely to make bleeding more likely, then there is really no cause for concern.
Out of all the medications they have given me, apixaban is the one that bothers no least, I don't particularly bleed mire if I cut myself. The one thing that is important is if you bang your head, to get it looked at .
I am a very reluctant long term drug taker , but apixoban has been so reassuring to me. Please think of the very significant risk of stroke of afibbers being hugely reduced , not the much ( much) smaller group with serious side effects. Legal drugs are ( I am afraid) a statistics thing and a drug is only licences if the benefit significantly outweighs the risks .
I have had several years of apixoban I have had no side effects whatsoever
Reassure your mum that she has a much better/ safer life with it than without it
I am 66 and have been on Apixiban which is a form of Eliquis. I am fine. I bruise more easily. That is all. My own mother was on Wafarin for decades and did OK. The modern anticoagulants are generally much safer according to my understanding. Also easier to use. It's not long to the appointment now so you can ask these questions then if needed. Try to stay calm so you can support your mother to make the best decisions. At the moment you need good, reliable information. You can't find that on Google. Dr Google is bad for our health!!
So sorry you have had such a bad time over the last few years. I have been on Apixaban for the last three with no noticeable problems except bruising easily? As Singwell sand Bob say, this is better for some one with AF instead of potentially having a stroke. You must be very tense about everything and perhaps you could try mindfulness as well as prayer. Try to relax and look at the good side - your Mum has had good results so far.
Two episodes in 9 months, maybe she doesn't need any drugs....has she had a full chat with her medic on stroke, bleed risks & her preferences. It could be some lifestyle changes including magnesium & CoQ10 supplements could stop them recurring.
Turning to you and your recent negative experiences, suggest you follow your Mum and strengthen your faith. One of the advantages of AF for me was the opportunity it gave me to strengthen my faith, which I would not otherwise have done. I now look back on the 'negative' events in my life (incl AF) with relief, realising God could have saved me from going on to make a serious mess of things eg failed Uni entrance & avoided drugs, failed final professional exams & avoided following the money, got my 'she's not the one' girlfriend pregnant (now my wife of 40+yrs with 3 wonderful children & 4 grandchildren and last but not least having AF has pushed me into 'living each day' and keeping busy focussed on others .....I could go on but I think you can already see the positive slant to aim for!
Good Morning MishaKitty, sorry to hear you are feeling so anxious and upset. Please feel free to reach out to our Patient Services Team who are available to offer advice and support for patients and carers info@afa.org.uk/info@afa-us.org. You may also find it useful to take a look at our Patient Resources webpage heartrhythmalliance.org/afa... where there are information sheets about medications including Apixaban.
Been on it for 3 years without any side effects. I'm 78 and very active. The internet is full of nutters I'm afraid. All the research does not support the brain bleed death theory's as being a significant risk. There is a cardiologist on YouTube who has done a lot of reassuring videos that are well worth looking at. Just google York Cardiologist youtube.com/channel/UCxtbUz...
Hi Roy - I'm hesitant to wade in here, and have no desire to interject a different argument into everyones kind efforts to reassure the OP. But, I would just say that it's a very bad precedent to dismiss people's experiences as just being 'a bunch of nutters', and I'm meaning in general as well as this specific case.
The following article is just one example of why I feel this so strongly:
Hi Helen. Sorry but I don't see the relevance of the Pelvic mesh link and an anti-coagulant worry caused by anti-coagulant haters. I have Pelvic mesh due to a double hernia so it's stopping me from getting a strangulated hernia. I probably would die if I did not have it. It's been in there for 40 years now.
My father died from a brain bleed but he was not on an anti coagulant. He survived the bleed but died after 3 months of being totally screwed and paralyzed, which was a mercy really.
I had a major stroke because I did not take the anti-coagulant I was prescribed due to my worry about having a bleed like my father. I was completely paralyzed at first and I lost part of my brain due to the stroke and can never get it back. I'm only able to function as well as I can due to the brilliance of the NHS. So I would urge anyone worried about misleading internet stories to do research to reassure themselves that they are taking the right course of action. Having another stroke now scares me far more than having a bleed which is statistically far less likely so I will never stop taking my anti-coagulant. (Apixaban)
Hi Roy -I completely understand your perspective given your history. Once again, I would simply state that everyones story is different and to dismiss those stories and experiences that are different from your own is counter productive.
The story about the pelvic mesh is to illustrate that after many years of people (ie women) having terrible problems with these procedures, which used to be carried out as a matter of course, the NHS has stopped using it for those specific uses and issued a full apology for the extent to which women's experiences were dismissed. It's really good to hear that you had a good experience with mesh, but does that mean that all those women who had a bad experience were nutters? No, of course not.
That's all I'm saying. There's room for discussion. It's not all black and white.
I never suggested that women who had bad mesh experiences were nutters but there are a lot of people on the net who don't know what they are talking about and jump onto trends and don't do proper in depth research on what they are posting and my sister is one unfortunately, and I've had to ask her not to forward emails from such people as it just winds me up. You do have to be very selective about some web sites. I never use Facebook for example.
Sky news is also on a bandwagon to create worry and dissent as it boosts their ratings. I rarely listen to it now. I do like some of there political interviews though as they often ask very pertinent questions.
I would only add to the other advice that there might be a question of dose. For very elderly people especially those under a certain weight and /or with poorer kidney function ( can easily be ascertained by blood tests) a half dose of Apixaban (2.5mg twice a day) is recommended rather than the full dose of 5mg twice a day. It is very likely that the cases of brain bleeding that you have read about occurred when the DOACs were introduced and it was not realised that the lower dose was more appropriate for very frail elderly people. The very many people who are stable and happy with their medication do not write in to drugs.com or askapatient.
Hi, I am on Eliquis as it prevents the risk of clots/strokeNeed to be taken regularly and provided it’s taken as directed is pretty safe
If ever she has a fall then get check out by A/E let them know she is on this just to be on the safe side if she fell hard especially if bangs her head
Talk to the medics about anxiety re the drug but with AF and no blood thinners is a dicey game of roulette
I have been on Apixaban about 10 years. I do not have many episodes. I was anxiety when I started, I was the only one that I knew about who was taking it. I have had one operation, which was ok. In time your mum will calm down I am sure. I do everything slower now, and have never cut myself. Good luck.
I take Eliquis but formerly Rivaroxaban which has more likelihood of ‘adverse events’ ie dangerous bleeding.
I’ve had cuts and bruises and a surgical tooth extraction - I wouldn’t say no problem but I could manage. I also had two bangs on the head, one while on Rivaroxaban which was a fall so bad I damaged my cheekbone and fractured ribs but no brain bleed. Then, while on Eliquis, a garage door banged me on the head (don’t ask!) but a CT scan showed no bleeding. Now, as someone said, that’s anecdotal, just my experience.
I know that’s not going to reassure you because you have realised the world can be a dangerous place and you can’t stop thinking about it. Most people accept that bad things happen all the time but don’t expect them. Your cascade of tragedies has led you to expect them. I understand where you are because I’ve had the same thing happen to me and I remember saying to someone that ‘I feel as though something huge is stomping on me from a great height’. I got over it with time and the help of my faith but maybe you are also able to get professional help to calm you.
Talking of faith, my go to in times of trouble is the story of the three men and the fiery furnace - I guess you know the one. If you read it again you’ll see what I mean 💞
Agree with all the posts about importance of taking anticoagulation if indicated .My mum died suddenly from a catastrophic AF induced stroke caused obviously by a clot.
She was not anticoagulated ,despite being what I now know to have been a score of 3.
She was full of life,mobile,and took lifestyle seriously.
I would still have my mum today , I feel,if she had the chance to prevent strokes. 9 years yesterday and missed so much.
When I was diagnosed I literally begged for Apixaban ( same GP) and was told that ' we don't anticoagulated our patients until their score is over 2)
Not until I had a mini stroke and admitted to A and E,who promptly put me on it.
I was never so glad.
Brain bleeds are the worst case scenario but even they can be treated. Other bleeding does not mean you are going to bleed to death either,it means you will take longer to stop. In cases of severe bleeding there are several methods of conting it ,and some anticoagulation medicines have reversal agent.
Now,speaking plainly here as my mum used to: you need to stop looking at Dr Google, focus on the positive that your mum has had a diagnosis and will be treated ,unlike millions of people who die from undiagnosed AF ,and subsequent strokes each year.
Your mum will be worrying about you worrying about her too!
Hope this has put things into some perspective for you xx
Just to support what others have said, I take Apixaban with no problems at all. I was scared of a brain bleed when I was previously on low dose aspirin, but not on Apixaban. Much safer.
Ive been on Eliquis for 10 months and have no side effects. Had a ablation back in June and will see my cardiologist the end of August and hopefully if all goes well will be taken off all meds. Iam 67yrs old and look forward to the day that I no longer have to take pills.Never was on meds my entire life untill 10 months ago. We all worry when we have to take meds, but it's worse when you start reading all the side effects that can happen, my best advice is live each day to the fullest and don't worry over the things we have no control of. Today is the Day the Lord has made, Let us rejoice in it. Hope this takes away some of your fear.
Yep. It is the best medicine I have ever taken. I had already had 3 mini strokes probably as a result of Undiagnosed AF. I initially went on to warfarin which many people like but on which I was very unstable. Eliqius has been fantastic. I have never had any side effects or excessive bleeding and I have also had no more mini strokes which shows it is doing its job.When I first went on anticoagulants I was convinced I was going to bleed to death. Having now experienced several deep wounds I can now confirm that this has not been the case. Yes , bleeding has taken longer to stop but only slightly.
I am sure your mum will be fine but I do understand your concern. In the end I would rather have cuts that take longer to heal than a full blown stroke. X
I’ve been on Eliqiis with no problems. I’ve cut myself a few times in the kitchen, banged my head underneath the cast iron staircase in my home, fallen off the stairs and fallen down in the woods…..all with no lasting problem. I even go for acupuncture every month. Please don’t be afraid of something that will prevent a stroke from happening. That’s the last thing anyone wants! Take care. Hope all goes well.Ellie Ann.
You've ALL been so kind and helpful. Thank you so much!! You have no idea 🤗. My mom is 79 but such a youthful 79. Always mistaken for a 60 yrs old lol. She's in great health other than this and early kidney disease which, she is working on naturally. She is strong as an ox, she's stronger than me! She's always been a hard worker and a go-getter... Also an artist. That upsets me too, because I don't want anticoagulants to take away her fountain of youth as in, her vitality. She's truly an amazing woman (even if she wasn't my mom lol). I wish I could be like her.
Also, her AFib is SILENT! So, no symptoms whatsoever. It only seemed to ever show up at her exams which she goes to without fail every 4 months plus she goes every year for physical and never misses those.. anyway, it only showed up twice as I said in 9 months and under the same exact circumstances... Stress from her ex husband, my dad, during an infection. Same exact scenario. He tries to get her back and she doesn't like that.. and as I said the infections were 1, sinus and this latest one a bug bite 😨😬🕷️
You guys I have to say.. being here few days . You're a lovely group of human beings it seems. Thank you so very much. I haven't cried at all today because of you! lol. God lead me here I'm pretty sure 🙂
My mom refuses things like covid vaccine and too many drugs. I guess I just want her to stay superwoman forever. I'm naive kinda or rather... Tender-hearted to my own detriment at times.
My Christian faith is the bottom line for where I find peace and an anchor in stormy times. I have struggled mightily with anxiety and depression and it's easy to feel guilty about that, regardless of where our "bottom line" rests. It has been helpful for me to do my meditating and praying not at bedtime or in the bedroom where anxious thoughts can churn away. A sleep doctor advised me about that years ago and I have practiced it ever since.I also read the book, "Feeling Good" by Dr. David Burns. It helped me identify catastrophic thoughts and the kinds of labeling we do unconsciously to justify our fears. It's an inexpensive paperback. It has a workbook as well. Worth thousand$ in therapy.
This morning in my reading was the call, "Return to the garden." That hit a deep spot for me. What a great place to find refuge and peace.
My mom is the same. She rarely worries about anything, very few things she does of course, she's only human, but she has great strength due to her faith and trust in God. Again, i wish i could be as strong as her.
Thank you and i just might take you up on the PM offer sometime. 💜
I almost forgot to ask... My mom has a few prominent veins on her hands, they're working hands as we call them in America, in case you're in the UK 🙂. Anyway, can eliquis cause a little bump on one of them? Is this something to worry about? When she lifts her hand over her head it disappears and there's no pain or other things.. just a little bump.
I don't know. But I have bumpy, prominent veins in my hands, something I inherited. Our veins are naturally more prominent when our hands are lowered, less when raised. As we age, skin also gets thinner and veins show more. I would guess this is all it is,. Not having pain is a good sign and I would think this is nothing to worry about, but it is something you can mention to a doctor sometime.marcyh
What I have noticed since being on Eliquis is crepey skin and also my scalp tends to feel a little itchy sometimes. I don't know if this is related to Eliquis though, maybe somebody does. Minor annoyances, all things considered.
I was just thinking as I work that maybe this whole scary time was a blessing from God, because she has silent afib...i feel really bad about myself for showing such a lack of faith in Him. Sigh.
Just reading your post had me feeling tranquil. I too am suffering anxiety and feeling down which is so much worse in the gloom of a UK winter which I cannot deal with too well……plus some bleeding which seemed to come from my gums somewhere producing a huge clot…dentist says nothing can be seen and all is good and GP suggested it was from Apixaban but no more to assure me…….then I’m told I must have some underlying health problem (from forum members )😢…no one really knows where it came from but it went and never returned. However I’m feeling very depressed. I’m so worried about a bleed on the brain….and on on on it goes….. I’ve prayed and am really trying to put my trust in the Lord and so need His help right now. I had one single AF over a year ago which lasted about 24 hours or so. I never had a high pulse rate at the time nor high BP but it was a horrible experience. I was put on Apixaban at A&E
I have been on Xarelto for two years now without side effects. Sudafed would definitely give me nervousness maybe even full-blown anxiety as I am prone that now but on meds. Maybe it was on the medication but the reason for needing medication that made her anxious. I think I would be more worried off of my anticoagulant then if I am on it. I am off everything but Xarelto now when it comes to my a fib. I just had my third ablation this time in the vein of Marshall. See what the monitor tells them. I had an implant of a loop recorder and it finally showed them what was going on within two weeks. A fib does not show up if you are not having an event when they do your EKG. Just like a toothache when you finally go to the dentist, sometimes the a fib isn’t there when you wish it was so they could see. Prior to that it was about eight months before they knew what was wrong. I had an ablation within two weeks of them finding it. Best of luck with your mom
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