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Bleeding on anticoagulants

waveylines profile image
96 Replies

Hi everyone. I went back on anticoagulants about three months ago. This time aphixiban. Was fast tracted after a few weeks due to bleeding this time vagina.......source was found and treated. Now my mouth is bleeding horrendously again. I have good oral hygene cleaning thoroughly. Ive now found out that Verapamil increases the active length of the new anticoagulant (drugs.com) .......am wondering if this is the problem. So effectively there is an overlap of when I take my next tablet causing the problem. Any one else experienced this? I really dont know what to do next. Waiting to speak to my GP but doubt they know.....lol

I have P-Afib & Tachycardia caused by sucessful cancer treatment -Verapamil has been a god send so dont want to come off that drug.

For a CHAD rating of 2 is it really worth taking anticoagulants? Rate Im going I will end up toothless if it continues to cause so much bleeding & irritation to my gums.

Anyone else experienced this?

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waveylines
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96 Replies
rosyG profile image
rosyG

I think your doctor needs to assess your risk of any serious bleeding against the effects of a possible stroke. There is a slightly changed algorithm for this which a stroke consultant told our support group about. He tends to favour anticoagulation as sees effects of bad stroke. Seek proper advice but in the meantime perhaps be less vigorous on the oral hygiene. Lots of people not on anticoagulant get him bleeding if too vigorous.

pusillanimous profile image
pusillanimous in reply to rosyG

Do as Bob suggests and visit and oral hygienist, (that's if you are not already)sometimes we think we are doing a good job, when in fact we are not. She will teach you the correct technique and give you some disclosing tablets. These are tablets contain a vegetable dye (harmelss) that you chew and then rinse your mouth, The dye will stain the plaque on the areas of the teeth that we are inadvertently missing when we brush and floss and indicate where we need to pay more attention when cleaning your teeth.

waveylines profile image
waveylines in reply to pusillanimous

As Ive said a few times.....this is already in place!!

BobD profile image
BobDVolunteer

When you say you have good oral hygiene do you see a dental hygienist on a regular basis? I go every three months as a result of 70 something years of NHS dentistry failure but sadly the damage was done years ago and we are now playing a saving game rather than preventative.

As far as stroke risk is concerned a score of 2 does highly recommend anticoagulants so I really think this is a decision you and your doctor need to take together rather than asking here where the greater number would likely say take them. I haven't had AF for a long time now but the risk remains and you would have to drag my warfarin out of my cold dead hands.

Do remember that anticoagulants do not thin blood so any bleeding is down to an underlying weakness. Many people have had their lives saved this way by an early indication of a more sinister cause.

waveylines profile image
waveylines in reply to BobD

My oral hygiene is excellent. Am under the care of regular dentist visits....they are also trying hard & done various treatments to try to help stop the bleeding. I clean my teeth with a good electric toothbrush, followed by brushes between teeth followed by a very strong mouth wash recommended by dentist. I do this twice a day. My electric toothbrush has a sensor on it to alert if brushing too hard. There is no bleeding at all when I'm off anticoagulants it all stops roughly 24hrs later & my gums teeth look great, bad breath etc all goes. My mouth tastes fowl - am pretty sure my breath does too. Frankly its ridiculous as I will definately loose my teeth if I carry on like this. I also have to inject twice daily which wasn't but now is causing bruising as a result of the slow rate of the blood to coagulate. Honestly if I had a serious accident I think my life would be in danger unless they were able to act quickly. Its not fun living with that knowledge. I feel like a walking time bomb!I think the anticoagulation is too much & I now suspect the verapamil is heightening its efficacy.....but if I come off Verapamil I will be ill.

Kidney/ liver functions are both fine.

I dont want a stroke but I also don't want to live with regular fast tracking to stop internal bleeding. Its also about quality of life tbh!

I will try to get hold of the EP. He has already told the GP that the alternative is to refer me to Leeds Hospital where they do an op. Know nothing about the procedure they do at the mo so no idea whats involved other than an op or or the implications.

I am sensitive to drugs since all the necessary cancer treatment. Am in remission. I am lucky to be here & would like to enjoy what ever life span I am deemed to have left. Would like to travel once covid is more settled but dare not at the mo. Personally I'd rather have a shorter life of good quality than a life enduring this nonsense. You may all think I'm daft but its a great shame that medical treatment tends to run on rigid lines- not every patient fits their set protocols. We are not machines! We are all different.

Sorry for the rant but I feel angry about the blinkered approach to Afib treatment...& all the pressure inducing guilt thrown at me to take a treatment that clearly does not suit me. As far as I can see now my options are Warfarin as they would actually test my clotting factor & adjust the dose or an op or take my chances. I surely cant be the only one who has reacted to treatment like this?

Sorry rant over! Lol...... thanks for reading all of this if you have. Gold star!!! 🤣😂

bantam12 profile image
bantam12 in reply to waveylines

Seeing a Periodontist for a second opinion would be my advice, although Dentists treat general periodontal problems a Periodontist is the expert.

waveylines profile image
waveylines in reply to bantam12

Thanks Bantam. OK how does one do that? Do dental practises have them? Silly question. Wont stop other places in my body bleeding either.....still the fast track nonsense! How can I go away?

catevalunii profile image
catevalunii in reply to bantam12

I have been on warfarin for 15 years with few problems and no bleeding in my gums. I declined to be switched to the alternative anti coags.

BobD profile image
BobDVolunteer in reply to waveylines

As a fellow c ancer survivor (ten years and counting) I congratulate you.

The "op" you refer to is likely a watchman or similar device which is implanted into the left atrium over the entrance to the left atrial appendage in the hope of stopping any clots formed therin from escaping and causing a stroke. It is not widely available under NHS but a few centres do do it.

waveylines profile image
waveylines in reply to BobD

Thanks BobD......congratulations to you as well. 🤗🤗 Am glad ure recent scare settled - long may it continue. I know am sounding negative....am frustrated as just want to enjoy my life.......we are both very lucky to be here.

FancyPants54 profile image
FancyPants54 in reply to waveylines

Perhaps you should talk to your EP or Cardiologist about Warfarin instead. You need something that works for you. Not something that works for others. Warfarin is more of a fiddle I think, but it could solve your problems.

I'm on Apixaban. No one has ever tested me to see how well it might work. I don't get bruising or bleeding issues on it. Which kind of worries me as I think I perhaps should!

I understand completely about the QOL argument.

Windlepoons profile image
Windlepoons in reply to waveylines

I totally agree about having a shorter life but of good quality, and do not think you daft at all. I have bled on anti coags too and ended up anemic. I refuse to live my life in fear of what may happen, and I have chosen not to take the anti coags. My decision, my body. 💖

waveylines profile image
waveylines in reply to Windlepoons

Completely understand where you are coming from on this one. Am so sorry they didn't work and awful that you became anaemic on them!! Am happy to give Warfarin a whirl & see if I fair any better. The op I would need to really think about carefully & know far, far more..... otherwise I will be forced down the same route as you.

Windlepoons profile image
Windlepoons in reply to waveylines

Thank you for your reply. It's such a balancing act where medication is concerned. Good luck and let us know how you get on if you try wayfaring.😊

Windlepoons profile image
Windlepoons in reply to Windlepoons

Flipping predictive text. I put warfarin not wayfaring. ☺

waveylines profile image
waveylines in reply to Windlepoons

😂 made me smile. I will. Someone else had same issue & has started Warfarin & so far doing well.....so all is not lost yet. 🤞

qp3usavk profile image
qp3usavk in reply to Windlepoons

I totally agree!!!

Slidingdoors99 profile image
Slidingdoors99 in reply to waveylines

PS I don’t think you’re daft at all. You have the same attitude as I do! X

Auriculaire profile image
Auriculaire in reply to waveylines

Have you thought of trialling a lower dose of anticoagulant? The one size fits all dosing for nearly all drugs takes no notice whatsoever of differences in drug metabolism between individuals. There was a poster on here a few months ago who took Apixaban in 3 doses of half a tablet with the blessing of his EP. If the Verapamil is making the anticogulant over effective a lower dose might be the answer. If your gum problems disappear when off the anticoagulant it is obviously not your oral hygiene that is at fault.

waveylines profile image
waveylines in reply to Auriculaire

Thanks Auriculaire. Yes indeed alls well when off the anticoagulant. My EP has said no to a lower dose....I asked him.... Am not sure splitting it up would help as it seems to accumulate... hey ho.

qp3usavk profile image
qp3usavk in reply to waveylines

I totally get your post. I had a vitreous bleed (eye) early in 2020 and, as luck would have it, was hospitalised with AF several months later. The cardiologists gave me Rivaroxaban after a few days of indecision, even though my CHAD score was only 2. They outweighed the risk of stroke against losing all sight in my eye. 3 weeks later, I had another, this time massive, eye bleed and lost all sight in it. Thankfully, I was able to have an operation to drain the blood 6 months later, and another, more liberal cardiologist approved my coming off the blood thinners, so I could have the operation safely. A year on, I now just take Bisoprolol for AF and blood pressure control. (I had a successful cardioversion year last September) The GP tells me, every time, that I should consider returning to Rivaroxaban. But I enjoy seeing life through both eyes at the moment. Yes, I know a stroke can be life threatening but sometimes there has to be a balance and quality of life. We are all individuals after all and, if you speak to an understanding cardiologist, they should give you the right advice. Good luck!!!

waveylines profile image
waveylines in reply to qp3usavk

Thank you. I am so sorry to hear what happened to you. How scary! Funnily enough a year ago when on the riveroxaban I developed floaters in one eye on investigation part of my retina had slightly lifted - forgotten the name but was told it was age, quite common......never thought about the anti coag! It hasn't progressed so was signed off by the ophthalmologist. Still have the floaters in that eye. Medicine is amazing but often it has a blinkered approach according to the specialism whereas effects can be far more diverse. I hope your eyes have settled now?

qp3usavk profile image
qp3usavk in reply to waveylines

Yes, more or less settled, though taking blood thinners would be a risk too far for me. All meds have side effects and, in consultation with our doctors, we can then make informed choices. Hope it all works out for you.

Nick1957 profile image
Nick1957 in reply to BobD

Love the Charlton Heston quote Bobd!

Auriculaire profile image
Auriculaire in reply to BobD

The revised guidelines issued a few years ago ( I think it was 2018) by the European Society of Cardiologists say that if the score of 2 is for being female and 65+ ( ie no comorbidities ) then anticogulation is optional. Once the score goes up to 3 because of a comorbidity then anticogulation is highly recommended. There has always been some controversy over the point given for being female - it is not accepted in Japan.

waveylines profile image
waveylines in reply to Auriculaire

I did raise this with the EP but he said you will need to be on it at some point do might as well now! And wouldn't back down. He will regard me as having comorbidities due to underactive thyroid and bc history.

Auriculaire profile image
Auriculaire in reply to waveylines

These are not comorbidities listed for dishing out points on the CHADsVASC. You could go for years without getting any of those. Frankly if this were happening to me I would be taking matters into my own hands but then I am what is known as a non compliant patient! I have binned the prescription my surgeon gave me for muscle relaxants and refuse point blank to take the painkillers on a daily basis as they upset my guts too much.

waveylines profile image
waveylines in reply to Auriculaire

Ih I didnt know that.....I need to find the list for the assessment ! Do you have any? Am a maveric too & will fight for whats best for me too. 😊

waveylines profile image
waveylines in reply to Auriculaire

Well I found it.....being female, my age & having high blood pressure (well managed) are my comorbities.....so score 3! Flip! Seems to me u can't avoid it.

Auriculaire profile image
Auriculaire in reply to waveylines

Yes the high blood pressure even if well controlled tips it. I was tipped up to 3 by having a TIA. It was 6 months after the afib attack before and very subtle . Nothing showed on the brain scan but my GP was sure from what I described that I'd had one and so it was on to an anticoagulant.

Not much help I know waveylines, but what you have experienced is a bit unusual. Prior to going on Apixaban, did you have a blood test to check your kidney and liver function with a further check around three months later? This is not because Apixaban can have an adverse affect on these organs, it’s because these are the means by which any excess chemicals leave the body thereby preventing a buildup which I assume would not be helpful. Although this process is clearly laid out within the NICE guidelines for Apixaban, it’s not unusual for some surgeries to be unaware. See the link below…..

cks.nice.org.uk/topics/anti...

waveylines profile image
waveylines in reply to

Thanks FlapJack for your kind words. My liver & kidney function is fine.

waveylines profile image
waveylines in reply to

Just spoken to GP. She knew extremely little. Wanted to know why I was on so many anticoagulants! When I enquired what she meant she said Ramiprimil Verapamil & Apixiban are all anti coagulants! Words fail me! I had to explain what each drug is and does and that they are three very different drugs and only Apixaban is an anti coagulant. I despair. She is going to write to the EP and is repeating blood tests. Suggested I only take Apixaban once a day.....

I know GPs can't know it all but surely they should know the basics??? Otherwise what is the point of them at all? She was going to stop 2 of the drugs cos she thought they were all anti coagulants. A little knowledge is dangerous they say but some would be handy!! Lol....

in reply to waveylines

Jeeshhh, if that wasn’t so scary it would be funny……

waveylines profile image
waveylines in reply to

Indeed Flapjack! And consultants hand care over to the likes of that.....God help me!

Sharc profile image
Sharc in reply to waveylines

I'm so sorry you are having this experience. I didn't do well on anti-coagulants either and had trouble with painful acid reflux and also bleeding. I chose to quit taking the anti-coagulant because I was miserable. I tried both Apixaban and Rivaroxaban with similar results. I also have hypertension but it is very well controlled. I am taking low dose aspirin..and yes I realize it's not recommended for Afib anymore but I figure something is better then nothing. I also have not had been in Afib for almost three years. I might be taking a chance I realize but in the end it is my decision, like you I would rather feel good then be miserable. I would be really worried if my GP didn't know the difference between an anti-coagulant and meds for hypertension. Perhaps you should consider finding a new GP? I am not counselling you to quit medications, only telling you of my experience. Please do as much research as you can and do talk to a doctor you can trust before coming to a decision. I wish you all the best!

waveylines profile image
waveylines in reply to Sharc

Thanx Sharc. Feel better am not alone! Am happy to try the warfarin first. The GP I think is new.....never heard her name before or maybe a student as they have them in the practise now. The trouble is though its a large practise you have no say in who will phone you. I did ask & was given the name of an experienced GP....but they didnt ring. She hadn't a clue about my history & all this caused the phone call to be a long one. Its like a lottery....wasnt like that before the pandemic. No one follows up anything up any more. My sense is GP practises are crashing....

Chuyueling profile image
Chuyueling in reply to waveylines

That's terrible, she could do much more harm than good 😠 My mum is on warfarin and gets spontaneous mouth bleeds, which really upset her. Her teeth and gums don't sound in as good shape as yours and we assumed that was part of the reason. Interesting to hear you get it even with excellent teeth. Just worried about other bleeds we can't see, eg stomach or worse. :/ She's 72 and only about 6 stone. I sometimes wonder if her dose is a bit much given she's so small. Maybe that's just me being dumb!!

waveylines profile image
waveylines in reply to Chuyueling

But dont they check her clotting factor and adjust the dose? I was hoping to be ok on Warfarin.....☹

Chuyueling profile image
Chuyueling in reply to waveylines

Your bleeding sounds much worse so I hope warfarin works a lot better for you than your current meds. Yes they do check her INR every 2 weeks. I just wonder how much it goes up and down in the interim.

waveylines profile image
waveylines in reply to Chuyueling

Oh I see.......Bob has his own device and checks his weekly & that seems to work. He had to buy it but doctors provide the strips. Mine would be happy am sure to off load the management on to me......I already self manage my b12 jabs.

Slidingdoors99 profile image
Slidingdoors99 in reply to waveylines

Oh no! 😡😡😡😡

Auriculaire profile image
Auriculaire in reply to waveylines

Given the half life of Apixaban is 12 hours ( she obviously does not know this either) it would be more sensible to take a half tab twice a day! Have you thought of changing GP? Such ignorance of widely used drugs is frightening. After my last hip op 3 weeks ago I was seriously anaemic and had to have a blood transfusion. My Apxaban was stopped 3 days before the op but I suspect that nevertheless I bled a lot on the table. This happened after my op in Dec but then I was taken off Apixaban 8 days before and given Lovenox bridging jabs. In the end in Dec they decided that my anaemia was borderline and did not transfuse me. This time my blood tests a fortnight after the op showed the anaemia had come back and was again borderline and the surgeon ordered another set of tests before my post op appointment. I had none of this bother when I had my colectomy - before going on Apixaban.

waveylines profile image
waveylines in reply to Auriculaire

Am sorry to hear this. Its rubbish isn't it. Hope they see sense & give u a transfusion! And you feel better soon poor you. Good point re half tablet....will get pill cutter out. Thanks. My surgery seems to have taken on a load of new doctors.....or are they really trainees......as they've all been scarily ignorant. GPS need to be aware that if they don't start actually doing their jobs they will be got rid of. My surgery constantly refer me back to my hospital for any issues....usually using the fast track process, they follow nothing up not even the letters that consultants send them or blood test results. They are not delivering medical care.....

Auriculaire profile image
Auriculaire in reply to waveylines

I got a transfusion after the last op. I reckon I really needed it as I was freezing cold and the nurses said how horribly pale I was. They were in every 20 mins checking my blood pressure during the transfusion . The latest lot of blood tests showed my haemoglobin had just made it into the normal range. The GP service sounds awful. Luckily here in France we are not yet at that stage. My GP surgery does not appear to be affected by the pandemic. I can't see any difference to before except that the waiting room is a lot emptier so they must be staggering appointments. But I get to see my GP with the same wait as pre pandemic. We are a nation of hypochondriacs so the sort of nonsense that is going on in the UK would have people out rioting in the streets. I am very naughty and only take 7.5 mg of Apixaban a day. The full dose gives me reflux and bloating and that sets off my afib . It also makes my joint pain worse. I have not noticed any difference to how quick my blood clots if I cut myself. It still takes ages longer than before I went on it. I think that QOL has to be taken into account where meds are concerned and I am not at all in agreement with the "one size fits all" school of prescribing especially as this can lead to women being overdosed on umpteen medications.I would prefer to be on Warfarin with Coagucheck but Warfarin is hardly used at all here and my GP is dead against it. So I prefer to take a risk rather than feel crap all the time.

waveylines profile image
waveylines in reply to Auriculaire

Awww glad u got the transfusion but won't u need follow up with iron too? In the UK if you protest too loudly to your GP they can kick u out of the practise which makes it hard to get another one to take u on......so u have to use a low measure calm voice & ask what u say to be put on record. I prob have a mark against my name as a tricky patient but dont care.....leaving my nedical care to them just made me ill so I take charge. The GP this morning was truly terrible & a liability - I have a sneaky feel she was a student not a doctor.....she thanked me for explaining to her what the meds are for & how they work at the end.... thing is I was doing her job....its wrong.Shame u can't get Warfarin....lol.

I agree with you about the nonsense of one size fits all medication....its daft & actually a rather lazy way of treating people.

Auriculaire profile image
Auriculaire in reply to waveylines

I agree- she is dangerous. Apart from anything else she should have a drugs book on her desk - British National Formulary. Easy to look things up in 30 secs. Bet she wasn't top of the class in pharmacology.

Well I think it's worth a discussion with your doctor waveylines. Bleeding gums tend to be the one symptom I get from Apixaban, from time to time, but in my case my guess is that it's less the drug and more the condition of my gums. I'm not particularly worried but you clearly have concerns, so you should address this with a doctor. Also from your description of your cleaning routine, I would consider wondering if it isn't a bit too rigorous. I was advised on day one of diagnosis to use a soft toothbrush and I use a water pick on a soft setting too.

waveylines profile image
waveylines in reply to

I use a soft brush.....no idea what a water pick is. Thanks for the suggestions. Please can we move away from focusing on my oral hygiene? That isn't the problem....honest!

Slidingdoors99 profile image
Slidingdoors99 in reply to

Waveylines is doing everything exactly right re teeth and gums.

waveylines profile image
waveylines

Goodness why the emphasis on my teeth cleaning routine?? Does that also explain bleeding from anus, lungs & & vagina (long past periods!!) All had to be fast tracked. I do not believe its an issues with my oral hygiene- its the very first thing I addressed & continue to do so.....with my dentist.....I wish it were that cos I could then do something about it!

Vrouse profile image
Vrouse

Give me toothless over a stroke any day. Your quality of life will be greatly impaired if you have a stroke, trust me....

waveylines profile image
waveylines in reply to Vrouse

Ha.....love that comment Vrouse....wonder if you'd say the same when you bleed out?.....(as its not just my teeth bleeding.) But am sure you'd be happy with that too....you'd be dead but not from a stroke thank heavens! Thing is that is a choice that you are making made when you are not actually experiencing they symptoms I am experiencing.....so how would you really know?

Vrouse profile image
Vrouse in reply to waveylines

I speak from experience, I had a stroke caused by AF which I didn't know I had. The physical and psychological effects have significantly impacted my quality of life

waveylines profile image
waveylines in reply to Vrouse

Am not saying strokes arent terrible. They are! Awful! Vrouse am so sorry to hear it happened to you.

But its not as black and white as you are portraying. Too much anticoagulant can kill you too.....& frankly on the modern ones they do not have an antidote......so its very serious if you are bleeding a lot. So just taking it and putting up with it is not always an option. Its a balance between what helps and what hinders or harms. Waking up the pros and cons isn't always easy or clearcut.

MarkS profile image
MarkS

Try warfarin. As I said in another post today, it is generally well tolerated and your INR can be checked with a Coaguchek so it's kept in line to prevent bleeding. That can't be done with the DOACs. I test weekly.

waveylines profile image
waveylines in reply to MarkS

Thanks MarksS.....I remember your post and its a really good idea. Ive suggested it to my GP. She is waiting to hear back from the EP. Thank you so much and am keeping my fingers crossed..... I think its probably due to the Verapamil extending the life of the modern anti coagulants. Fingers crossed with the monitoring of warfarin it would be adjusted so that doesnt happen. 🤞

waveylines profile image
waveylines in reply to MarkS

I meant to ask....do you test yourself weekly or does the nurse have to? Hoping I can do it!!

MarkS profile image
MarkS in reply to waveylines

I test weekly myself. I have my own coaguchek which costs about £299 I think. Then the surgery should provide test strips. You can go onto the Roche Coaguchek site and explore your options. I have a Coaguchek XS and it is the best thing I have ever bought. If you do go that route and have any issues feel free to PM me.

waveylines profile image
waveylines in reply to MarkS

Thanks Mark - much appreciated. It does sound like the solution to me. 🤞

waveylines profile image
waveylines in reply to MarkS

I've just looked it up Mark its £533! Ouch!

MarkS profile image
MarkS in reply to waveylines

That is steep! I see there's a new INRange meter which is the same price. It looks as though it's an upgraded version of the Coaguchek XS. I think you should be able to get it VAT free, i.e. £444.99. You could try just going for regular INR tests at the local hospital/surgery initially whilst you make sure it is for you.

Chuyueling profile image
Chuyueling in reply to MarkS

My mum is on that and gets mouth bleeds. When she tells them about it, they just say, well the INR is fine. :/ To be fair she's never been on an alternative anticoag.

waveylines profile image
waveylines

Virouse how do you feel about coughing up blood from your lungs and bleeding from other orrifices ? You happy with that too??? Strokes are a terrible thing & I am not suggesting doing nothing but neither do I think living a miserable life due to a drug a great idea either!

Honestly I was really seeking constructive support & advice........on what steps I could take to sort this out......not flipant comments. Its not just tooth loss but my mouth and jaw ached and hurt from all the bleeding. Am not quite at that stage again but will be soon. Am no woose Virouse.....I went through over 15months of aggressive cancer treatment then a further too years reconstructive surgery. Ifought for my life. I value life greatly but also quality of life.

I think Flap Jacks comment over potential build up & the info on Verapamil extending the life of apixaban in the system the most useful and informative.....this would explain the accumulative effect I am experiencing.. ...so will try to talk to the EP about this.

Must be someone else out there who has been in my position surely.

Vrouse profile image
Vrouse in reply to waveylines

My partner is on warfarin and bleeds alot, I do not on apixaban. He has to be tested every 2 weeks and after a number of years it is still not controlled. He often has to go for emergency vitamin k injections when the readings are too high. Alternative anti coags are not an option for him as he has a metal heart valve. I was not making flippant comments, I was saying how it is for me, obviously we are all different and have been through our own battles....... I hope you get sorted and your quality of life improves

waveylines profile image
waveylines in reply to Vrouse

Thank u. An sorry your partner struggles with getting the warfarin dose at the right level. If that doesn't work for me I will have to consider the op. Not keen. You are very lucky that Apixaban works so well for you with no problems....not all of us are that fortunatr. I can see for you your choice of taking it is therefore obvious & straight forward. Wish that was the case for me but its not. Take care.

Greenhilldrive profile image
Greenhilldrive

My cardiologist prescribed Warfarin for me because the dosage can be adjusted according to my INR results, so there is more control. Moreover there is a simple antidote should any bleeding get out of hand,

I have been on it for more than a year and so far there has been no need of dose adjustments and I have not had any bleeding episodes except for very minor bruising. You could ask your doctor if that might be an option for you.

I wish you all the very best 😊

waveylines profile image
waveylines in reply to Greenhilldrive

Thanks....yes I have asked my GP....she is new so wants to talk to EP 1st.

Redporti profile image
Redporti

What did they find was the cause of your vaginal bleeding? This has happened to me on Edoxaban & I’m going for a scan today.

waveylines profile image
waveylines in reply to Redporti

Polyp

Redporti profile image
Redporti in reply to waveylines

Did they find that on the ultrasound?

waveylines profile image
waveylines in reply to Redporti

No the ultra scan was clear....it was when I was examined by the gynae.

BobD profile image
BobDVolunteer

To further recommend warfarin I have been on it 17 years with no problems at all other than slightly brittle nails. I recently was given a Coagucheck machine by my sister after her husband bought one and sadly died shortly afterwards (myeloma) but only test when asked to by my clinic (8 weeks usually as I am very stable.) If (like now) I have to take any other drugs (antibiotics for a gum boil) then I test either side to check there is no interaction. Maybe I'm lucky but it is a total non event really.

waveylines profile image
waveylines in reply to BobD

Oh brill - thanks Bob. It does sound like the way forward. Do you have to be careful with what you eat/drink? Hopefully GP will sort it. I think I will ring the EPs office myself though as she really hadnt a clue when I spoke to her. She wanted me to take my blood pressure but I dont have one anymore as another experienced old school GP said they're not reliable when you have Afib.....though my Afib is intermittent.....so I gave it to a friend.

BobD profile image
BobDVolunteer in reply to waveylines

So long as you keep to a sensible regular diet there is no problem for me. The dose may have to be adjusted over time to find the right level but so long as you don't suddenly eat a huge plate of broccoli three times a day it levels out. Remember the amount of warfarin you take is not important, only the resulting INR and whilst I usually take 4 mg per day for an INR of 2.4 I know of people on 18 mg for the same level. It all depends on how it is metabolised in your own body.

MarkS has a useful trick he may elaborate on. By taking a daily VitK supplement, whilst his dose may be slightly higher than usual, any dietary variations are %wise much lower and have less effect.

waveylines profile image
waveylines in reply to BobD

My thanks to you & Mark.... 😊 much appreciate your info & help. I guess it takes a little while to find the right balance. I am on a new learning curve!!

Peileen profile image
Peileen

Hi waveylinesPerhaps the dosage is too high. I am on Edoxaban 30mg which is the dosage for people of 60kg or less. Over that is 60mg. I am 59kg and so just qualify for the lower dosage. Can Epixaban be likewise have the dosage cut?

It took me a few years to agree to anticoagulants. I have had to give up healthy stuff like fish oil capsules, teaspoon of turmeric mixed into food, a garlic tablet, glucosamine and chondroitin for arthritis and St Johns Wort through the winter and no anti inflammatory pain killers, esp aspirin. Because all these act on coagulation or platelets I refused Edoxaban for years because they did me so much good. I do wonder sometimes if I made right choice forgoing them for an anticoagulant.

Have you considered waveylins that you may be taking some food or supplements that alongside Apixaban are causing these bleeds. Best wishes,

waveylines profile image
waveylines in reply to Peileen

Apparrantly not Peelan....lol. I asked about that with the EP. He said not as then the drug wouldn't be effective. To be honest he won't be happy about the GP telling me to take it once per day rather than twice till they sort it out. But then that GP thought Ramiprimil & Verapamil were also anti coagulants! 🙈So I have zero faith in her advice . I think MarksS suggestion is a really good one & am following that one up.

belindalore profile image
belindalore in reply to waveylines

In the USA if you take apixaban, Eliquis to us, if you are a senior citizen or of slim weight they prescribe 2.5 mg. All others take 5 mg twice a day. Unfortunately my partner and I are both sensitive to prescription meds so we have gone the natural route. Too many Drs here are pill pushers. Don't care about finding causes. Only treat the symptoms. Medicine seems to have gone downhill along with the rest of the world. Hope you find a good Dr to sort things out. Pretty scary about that Dr who didn't know what your meds are for. That Dr needs to be reported in the event a patient is harmed. If someone hasn't been already. Which could have been you if you weren't knowledgeable about the meds you take. Take care.

waveylines profile image
waveylines in reply to belindalore

Thank you. You are right.... you take care too.

waveylines profile image
waveylines in reply to Peileen

No I don't take many supplements since my bc treatment days.. I take CalciD with vit D3. I used to take Thornes Basic but haven't for months. I sonetime take vit C....would that have any effect?

Peileen profile image
Peileen in reply to waveylines

No waveylines, I don’t think so. It’s just if supplements act on platelets or coagulation. I hope you get it sorted out soon.

Slidingdoors99 profile image
Slidingdoors99

I’m so very sorry to hear this. It sounds really horrendous. Your GP should see you today…. Awful. Poor you. X

waveylines profile image
waveylines

Awww thanks Slidingdoors. Generally my GP practise sees no one these days all phone calls.....not even when they are fast tracking you. I did once get an app but then the GP rang me back & said he was cancelling it & fast tracking instead.....that was nearly a 3 week wait before seen. Its not a caring practise......but think most aren't these days. Lol...

Windlepoons profile image
Windlepoons in reply to waveylines

Same in East Yorkshire. No way of seeing a GP face to face. I loved a comment on here recently where they said the GPs are still hibernating. 🦔😊

waveylines profile image
waveylines in reply to Windlepoons

😅🤣 Hilarious! Love that... This last GP complained that I hadn't got a blood pressure monitor she didn't advise me which one to get that copes with Afib, nor did she invite me into the surgery to have it checked with the nurse. No.....my fault for not having one. Full stop!

Windlepoons profile image
Windlepoons in reply to waveylines

You couldn't make it up.🙄🙄🙄

momist profile image
momist

You are not the only one here who has lost faith in the GP service. I have had some horrendous abdominal pain over the last few weeks which has resulted in forthcoming referrals to the colonoscopy and urology departments. To get those, or to see a doctor at all, I ended up in A&E and then the 'Hot Clinic' for possible cancer patients. At the GP health centre, all I got was a nurse or, once, a 'nurse practitioner'. Never a doctor to be seen.

waveylines profile image
waveylines in reply to momist

No you are so right.....at my GP surgery u don't even get to see a nurse.....its like they've washed their hands of all responsibility for their patients! I heard on the news that they're threatening to walk out if the gov insists they see patients! I work in multiple settings....am out on visits, albeit mask & hand sanitizer.....many people in jobs r out there with other people including their hospital colleagues. What gives them the right to special treatment???? Its a disgrace it really is.

momist profile image
momist in reply to waveylines

The ambulance crews have done an amazing job over the last 18 months, and are still going!

waveylines profile image
waveylines in reply to momist

Absolutely. They are amazing as are all the hospital staff. Very courageous.

Becksagogo profile image
Becksagogo

After my third visit to hospital this year which has taken its toll on me weight wise , my GP said he wanted me to come off Rivaroxoban and go onto Warfarin. At 6 and a half stone he was worried about me and tbh it was the best thing I have ever done. I too used to bleed from various parts of my body but despite protestations from the hf nurses they kept me on Rivaroxoban. I have weekly check ups with my GP and take 2 mgs with an INR of 2.4. I take it at night as recommended. I know it is very early but no more bleeds as yet! And mentally/ physically I feel so much better. No weight gain yet but I'm eating well!

waveylines profile image
waveylines in reply to Becksagogo

Oh wow that sounds really encouraging. Thank u for sharing that as you sound just like me! Feel more positive now....thanks!

Not sure what's happened to my usual GPs who are pretty good but just seem to get NQ doctors on the phone who are pretty clueless & don't know what to do.

Becksagogo profile image
Becksagogo in reply to waveylines

Oh bless you. I'm afraid 😨 that the NHS can be a bit of a lottery. I have a wonderful GP who listens and is interested in me and what I have been through which is very lucky. There are a couple of locums that I prefer not to see!You've been through an awful lot too and I do hope that you 🙏 have the strength to enjoy life again. X

Kiddle profile image
Kiddle

Check with your pharmacist. Friend's daughter just finishing pharmacy school and I was appalled by how little doctors know about the drugs they prescribe.

waveylines profile image
waveylines in reply to Kiddle

Thanks Kiddle. I like the pharmacists -I think they must find it frustrating dealing with the surgeries.....the repeat prescription is a bit of a nightmare for them. My EP is really clear -no lowering of dose. He has already sent the GP what they should do next if I carry on bleeding a lot. Strangely he didnt mention switching to warfarin as the level is monitored regularly but suggested an op instead of being on an anti coagulant.

Problem is the newby GPs dont read whats on file & frankly havent a clue. Also since the pandemic you can no longer choose a doctor and book an appointment with them. Its all on the phone and they just seem to dish out a list to whoever is on. My history is a bit more complex, they dont have time to read it - usually I would stick to certain doctors in the practise but although Ive asked it doesnt work like that anymore.

Am tempted to move practise but I had to negotiate being on a certain medication when I joined 11 years ago and if I move the next practise may refuse. So dont want to rock the boat....

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