Really sorry for another post but I was feeling very ill on Edoxaban so GP switched to Apixoban and felt as bad if not worse! Shooting pains in head, flu-like feeling, breathlessness, swollen glands, depressed etc. Dreadful. think I am hypersensitive to them. Definitely the pills not flu or anything. My question is this. Will I be ok to not take anything today and speak to GP (hopefully!) tomorrow? My other question is does anyone think it’s worth trying Rivoxaban for third time lucky?? Didn’t expect to be so ill on them as seems most folks tolerate well. Thanks.
Anticoagulants - help please! - Atrial Fibrillati...
Anticoagulants - help please!
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Joeyy06
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Hi Joey
How about trying good old fashioned Warfarin, which quite a few members on this forum including myself and BoBD still take. I always take mine mid breakfast and would recommend you doing that.
Sadly no one on this forum can advise you regards taking your apixaban or not today. Imagine if someone said to you not to bother taking it and you had a stroke. Who would you blame for that outcome? The best solution is for you to call the NHS 111 number and ask them for advice.
Hope you find a solution and please let us know how you get on.
Jean
Thank you. You are quite right. I just can’t bear the thought of feeling so ill again today!
I feel so sorry for you. I know what I would do, but can't advise you.
Joey, You are not alone. I couldn’t tolerate any of the new anticoagulants. I was ill for a long time with trial and error. Awful time for me. In the end l asked to try Warfarin and l have now been on it 7 years. I do get some side effects but tolerate it much better and have a life. Might work for you? Best of luck.
I seem to largely tolerate Rivaroxaban been on it for 12 years. I have gastric problems generally so can never say drugs arent giving me some of my gastric symptoms, who knows, certainly medics don't seem to know.
Have you thought about Warfarin, many people seem to be fine with it. Good luck and hope you find a suitable anticoagulant. It horrid constantly feeling poorly and is not acceptable. Best wishes.
Thanks. I’m assuming Rivaroxaban is the last one of the new ACs to try. Very frustrating. As if dealing with a recent diagnosis isn’t bad enough!!!!
If you try Rivaroxaban you will need to take it with a meal not just a snack, it needs to be taken that way in order for your body to absorb it fully. Good luck.
There is Pradaxa as well though not many people here take that. It has worse gastric issues than the "bans" .
As time moves on more and more folk have issues with these NOAC's. You could ask to be put on a much greater tried and tested a/c ... Warfarin. It has down sides such as regular testing but thats a walk in the park if you can tolerate it well - and better than these NOAC's.
I have been on Warfarin for 14 years ( others even longer ). I have tried Edoxaban ( for some 4 to 6 months ) but all it did was give me vile nightmares and sleepless nights. Went back to Warfarin - no sweat.
I self test my INR with my own device. Similar to a diabetic self testing their blood sugar ... again, no sweat.
John
I think there are something like 5 NAOC's so there are choices however we cannot advise you on this. I took Warfarin for years then put on to Pradaxa and ok on that.
I have been talking Rivaroxaban for about 2 years. Can disturb my sleep and have weird dreams. I don't know if I would call them nightmares yet. Good luck with it. I was taking low dose aspirin for 15 years. It's not supposed to be very good but if all others are causing issues. Talk to cardiologist.
Like Afibtastic previously, my personal choice has been to take an antiplatelet (75mg over-the-counter aspirin), though not as effective as a DOAC in mitigating stroke risk. Dual antiplatelet therapy (with Clopidogrel) seems to be used outside the UK, but is not advised by NICE for AF sufferers.
Aspirin alone did not prevent my sister from having a stroke. She was admitted to hospital (NHS) for a Gall Bladder operation. They could not get her Heart Rate down, so discharged her with a box of aspirin (she had AF) and no operation. Three months later she had a stroke, fortunately not too severe.
I take Axiban and not like it ,relief I am not the only person…….. I have just started a big breakfast an lots more water and I felt better after doing that.
It's such bad luck when drug side effects are serious, like this. You are very unfortunate.
You don't give your age in your "bio" so it's harder to guess at things (and I am sorry that I've forgotten, if you've given it). If you are of an age or profile (as calculated by your Chads2 score) who need anticoagulation, and you might go into AF, then I would likely get straight n touch with my GP, if I were you, and be guided 100% by them. Some doctors used to give a low dose aspirin for AF, but it has been shown to be ineffective compared with warfarin and DOAC drugs. It might yet, however, prove to be better than nothing - only your doctor is in a position to know.
Steve
I have spent a year trying different noacs. I hate them all and don’t feel myself on any of them. Chest pains, breathless, fatigued.
Just thinking of asking for warfarin.
I keep thinking it’s just anxiety after an ablation last November but maybe it’s the blood thinners…. I’ll never know unless I try warfarin…
• in reply toClareGott
Hi,
I was diagnosed with paroxysmal AF in January 2010. In those far off days these NOAC's were unheard of unless you were the manufacturer jumping through all the legal hoops to get the drugs tried and tested before putting them into the market place. Warfarin, in contrast, is around 60 to 70 years old and well proven. It has many disadvantages nonetheleast of which is regular testing - this could be weekly or fortnightly or as long a stretch as 10 weeks.
As with all drugs, new or old, there are many folk who can't handle Warfarin for a range of reasons - these NOAC's are a godsend to those folk, so long as they can cope with their side effects.
Warfarin is a much maligned drug and has had a severe negative bashing by manufacturers and those with associated vested interests ....... more bluntly I call it dirty marketing.
If a patient goes to the trouble of learning about Warfarin, the do's and don'ts about diet and its impact on the drug and if one cares about oneself then there are devices available in the marketplace manufactured by Roche known as Coaguchek XS testing system for Warfarin users. One simply jabs a finger, draws a drop of blood drops in onto a test strip and waits for a number to appear on the screen of the device ... this is known as an INR number. Most GP surgeries are able to process this INR number and determine the next dose and from all this advise on the next test date and the dose too.
In fact this much maligned testing system is no different to the process a diabetic goes through in testing for their blood sugar ........ yet this 'diabetic' system isn't maligned like the Coaguchek system is. As I say, dirty marketing.
If a patient isn't confident in self testing then most modern, progressive surgeries have the facilities to undertake this INR testing process and advise patients. No great drama.
I was 65 when I went on Warfarin and have been a bus driver for some 32 years, retiring only recently at 79. I've been a manual worker and so at a high risk of some of the side effects of Warfarin ...... such as ....... bruising very easily, bleeding very easily from, cuts or gashes ....... but its no great deal. I always carry a First Aid kit in my car and when I was on the buses carried the same in my work bag. Never had any issues.
Further, I have had several medical procedures including knee replacement surgery where I have had to stop Warfarin, with the knee job for as long as 6 days before surgery. Not a big drama as I self test for my INR. Even so, if you follow medical advice there are no big issues. I also keep a medical card in my wallet just in case of accidents and I am rendered unconscious.
I've tried to make this comment as objective as possible ....... someone has to put the argument of for and against Warfarin in perspective. Good luck.
John
Hi
Why not try PRAXA 110mg x twice daily
I've been on it almost 5 years.
I chose as it has an antidote, twice day means not fussy regarding time taking it, and taking too much would be a lesser problem than 2 x 24hr meds instead of 1 x 24hr med.
They are foil wrapped. Choose corner where its black to open from one corner.
Take with fruit or fruit juice.
I've always been happy with it. I've had 3 ops since Stroke in September 2019. I stop 3 x 24hrs before day of op and then 2nd day after operation. No problems.
No blood tests needed like when you take Warfarin.
cherio JOY. 75. (NZ)
Ask your GP if it could be the excipient causing the problem. The excipient is the substance of the pill in which the active drug is suspended. The same basic drug ( eg Apixaban) can be suspended in different ingredients depending on the company making the pills. I have recently had a conversation with a friend whose husband was hypersensitive to the excipient (for a different drug) so it’s worth asking. Hope you soon have this sorted.
I’m sorry you’re having trouble with apixaban and can’t help there as I’ve been on them for years and years and thankfully no problems. However I was initially on rivaroxaban but had to come off them as they kept giving repeated UTIs
Yes one day to come off the tablets should be ok as many times we have to stop them for varying procedures. Although why not persevere until you see the doctor? I know you feel bad but then doctor will actually see how you are
I do hope you feel better soon as anticoagulants are so important with afib
we don’t have Edoxaban in Australia so I can’t comment on that but I had reactions to Apixaban and Pradaxa but I seem to tolerate Xaralto okay. I got the impression that Xaralto isn’t necessarily my EP’s favourite NOAC. I’ve been on Xaralto for about 6 years.
I wouldn't worry about missing a dose personally as Apixaban stays in your system for longer than the 12 hour period so you will still be getting some protection. Just not as much. Could be that you are not clearing the drug or excipient as quickly as you should and getting a build up in your body that is causing the problem. However if you have a stroke because of that lower protection you will feel a lot worse than if you suffered the pains. So consult with your GP to try and find a solution. He should give you a kidney function test to see how your body is coping with the drug.
Because I'm over 80 and theoretically should be on a lower dose that is what my GP does. I'm still on 5mg twice a day. She is giving me a kidney function test every 6 months. The consultant I saw said to stay on the maximum dose for as long as possible. Because that letter is still on my file she takes notice of that rather than some arbitrary age.
I forgot to ask about other drugs you are on as I found that some of the drugs I was put on after my stroke I couldn't tolerate at all, so I'm only on Apixaban now.
I hope you find a solution that works for you.
All the best.
Roy
Ihave been downgraded from 5mg x 2 Apixaban daily to 2.5 Apixaban daily cos of my age and cos I am under 50Kg. Was worried about the possible increased stroke risk but I don’t want my kidneys to deteriorate either! I have cinnamon on my breakfast cereal daily which I gather is also a blood thinner and now the Apixaban is half dose I am assuming that it will be OK.👌
I'm not aware that the Apixaban can cause kidney deterioration. It's caused by aging. My consultant thinks it OK to take the full dose as long as your kidneys are coping alright. I'm also under 50 kg.
From Livestrong "Whether you are on a blood thinner or not, you should avoid excessively consuming cinnamon. Too much coumarin can cause bleeding and damage your liver. Those with liver conditions should be especially careful not to eat too much of this spice. If you're taking a blood thinner, talk with your doctor or nutritionist. They may tell you that you can continue flavoring your dishes with it, or they may tell you to discontinue using it altogether."
Personally I'd stick to cinnamon tea so you only get a small dose, and check with your GP about the interaction with the Apixaban.
As a matter of interest Warfarin is made from cinnamon as it contains coumarin, a blood-thinning agent
All the best.
Roy
I felt ill around one month after I started Rivaroxaban. I switched to Apixaban, then edoxaban, but digestive problems continued.
So I came to the conclusion that any form of DOAC was the problem, given that they all work in a similar way.
So I started on Warfarin.
First thing to say is that it is not as convenient as the newer forms of anticoagulant. For people who have been on it for a long time (often from before DOACs were available), they can put up with the regular blood tests etc.
I found it a pain to get the initial dosage right. I'm not sure if it helped my side effects at all
In the end, the cardiologist did repeated Holter studies each a week long and could not detect any Afib, although my Kardia mobile did. Cardiologists looked at the Kardia traces produced, and found that they did not represent AF.
So I stopped taking anticoagulants a year ago.
Why don’t you put cinnamon on things? There are other natural blood thinner s which you might be able to use.
Hi like you I have sensitivity to medications and get horrible side effects. However you don't say how long you have been taking Apixaban. The side effects do get better after a while but it can take a few weeks. One needs to give it at least a month. Most people seem to be alright after a few weeks. I still feel lightheaded at times on Apixaban after months but can just about cope with it. I do hope you feel better soon.
I too feel lightheaded sometimes but I never thought of putting it down to Apixaban.
TracyAdminPartner
Hello
We would advise contacting your GP regarding medication, but if you would like a general overview of AF, our Patient Services Team are here to help; heartrhythmalliance.org/afa...
Alternatively, you will find a wealth of information and resources available on the website:heartrhythmalliance.org/afa...
Thanks as always for all your helpful comments. I have an appointment with the doctor this afternoon (at last!) so we shall see!
I could not tolerate any of the NOACs …..tried them all. I do not take any. Have a consult for a watchman next week for information gathering. Not sure I want to go that route yet.
It is frightening but you are not alone.
No DOACs for me either, but I'm older at 77, and my reasons are different to yours.
Were you really age 9 when your ASD was corrected (although you say it still leaks)? And ASDs do potentially increase the risk of strokes, as you must know, so I understand your anticoagulation concerns.
I hope you find the best way forward for you.
bob
Try Rivaroxaban (1 20mg tablet with food- very important to take it with food and not on an empty stomach) and if that fails then ask yourGP for help.
There may be readers wondering what the difference is between NAOCs and DOACs, given that both acronyms are being used here. No difference, same set of Oral Anti Coagulants. N stand for Novel or New, which they aren't any more so that has been superceded by D for Direct.
There's also a procedure the watchman if can't tolerate noacs but u better to ask doctors ur options
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