Afib and noac side effects

[Gilldy]

Hi I was diagnosed with afib about 7 weeks ago. So far I've tried riveroxaban and apixaban on full dose and half dose. The side effects were terrible so last night I started dabigatran hoping it will be better. Does anyone know how long it takes for apixaban to get out if your system once you've stopped taking it? Alao is anyone on dabigatran? How are you doing on it?

[Beancounter Volunteer]

Hi Gilldy

Sorry to hear you are having problems with NOACs, certainly rivaroxaban must be taken with food, I use that and it took me about a week of stomach aches but once I literally started taking it as I ate my evening meal most of the problems went away.

Apixiban and Dabagitran are both taken twice a day and of course are of lower dosage due to that and generally fairly well adopted, not many seem to have side effects. I am sure that others who take these will comment.

Of course you could just not suit any of them in which case you may need to talk to your medical advisors about warfarin, which is again pretty well adopted, but some do have side effects with that. The challenge with warfarin is of course regular blood tests and variable dosages accordingly to you and your diet, which has to remain roughly the same.

Be well

Ian

[Tycomed in reply to Beancounter]

Hi Ian, just to let you know that we have an INR device for patients that is on Warfarin. They can perform the test in the comfort of their own home with only finger prick. An IT programme accompanies it for the dosing aspect if the patient so wishes.

[Beancounter Volunteer in reply to Tycomed]

Hi Tycomed

careful here please, I think most people know about the self testing equipment for warfarin, which I think is produced by a competitor of yours? If you company also does one, then I suggest your private message me with the details.

The challenge is at least threefold

1) the NHS seldom will pick up the bill, the current device we know of is around £299

2) testing strips are also expensive, and again NHS seldom fund.

3) Most anti-coag clinics seem to be pretty anti any patient adjusting their own warfarin doses according to self testing. Most self test patients I know simply don't tell them.

Be well

Ian

[jennydog]

I have been taking dabigatran for 2 years. It was prescribed originally with 28 days supply of antacid tablets. After a few days my stomach didn't feel right so I posted on here. CDreamer responded and said that it needed an acid stomach. Google confirmed it so I ditched the antacids.

I take the a.m.dose with my breakfast toast and the p.m.dose with a drink of tea at night. No problems now. I had the annual kidney function test last month.

Do not put the capsules on to a damp saucer. They dissolve in a flash releasing 100s of vile tasting white balls.

[Buffafly]

What side effects did you have?

[Gilldy]

Thanks for your replies, i took riveroxaban with food but still the worst side effect was a stomach ache that made me feel as if I'd had major surgery couldn't walk more than a few yards. The apixaban was even worse, I wrote the side effects on a piece of paper yesterday- 17 in total- when I showed my gp he asked me if I'd considered yoga a I was obviously suffering from anxiety!! Reluctantly he agreed to put me on dabigatran which i started last might. Many of the side effects have lessened or gone thank heavens but already I'm suffering from an acid stomach. If this doesn't work there's only warfarin left. I don't really mind the blood tests etc I just need to find something i can tolerate. My gp is not very helpful.

[Barb1 in reply to Gilldy]

Just to point out, there is another NOAC, Edoxaban. But hope you are successful with Dabigatran. Always have with food.

[BobD Volunteer]

Warfarin has been around for yonks and most people manage very easily. For me it is the first line not last resort but we are all different. I've been on it eleven years with a good stable INR.

[Gilldy]

That's good to hear. Si far (I've only had 2 pills) I've just got pins and needles in my hands and a dull stomach ache. Hopefully nothing else will develop.

[rosyG]

I take Apixaban and have not had any side effects difficult to know whether it's the meds or if you re suffering from affects of new AF??

[Gilldy in reply to rosyG]

Hi - to be honest it seems unlikely- i had three weeks after my stroke before they diagnosed af when i was absolutely fine. It wasn't till I started taking the drugs that i was poorly. Also i have a slow version of af - I've no symptoms at all.

[foxglove1]

Ive been on Apixoban for 7 months and have been fine on it.

[Gilldy in reply to foxglove1]

I'm glad you are ok on them and very jealous! I'm sure my doctor thinks I'm exaggerating my symptoms. So far (3 pills in) dabigatran isn't looking too bad . They're a different class of drug to apixaban and riveroxaban so may well not have the same problems for me.

[Lulu777 in reply to foxglove1]

Hi. I changed from Warfarin to Apixiban last Thursday and no side effects until I woke up with a headache this morning. I haven't taken any painkillers as its not an severe headache but a niggling unpleasant headache. Do you experience any headaches or did you when you started on Apixiban?

[Gilldy in reply to Lulu777]

Hi - i no longer take any anticoagulants as it was decided they'd made a mistake and I didn't have AF after all. I hope you get on with them - lots of people have a few minor side effects for a few weeks and then settle down. I'd start a new thread if i was you as probably only I will see this and I'm sure there are lots of people who can comment on this.

[Gracey23]

Hi Gildy, I'm on dabigatran for about 5 mos now. At the beginning I had some indigestion but find now. I drink a full glass of water with it which they recommend. In the morning I take pill first thing and then have my protein shake. In the evening I take pill couple hours after dinner . They say not to lay down for an hour after taking so take early evening before bed. I dislike taking the medication like most of us but I'm not complaining if it keeps me from having a stroke. Good luck and hope it works for you, Gracey

[NJ47]

I've been on Rivaroxoban for around 18 months with no side effects. Sorry it didn't suite you

[Gilldy]

Hi thanks for all your replies. I've taken the pills with food and a full glass if milk. After saying last night that I thought they weren't looking bad I've had an awful night. Went to bed at 10.00 after taking the last pill at 9.30 and went straight to sleep. Woke up at 11.00 with strange pains in both arms - difficult to describe but like a heavy ache with a flushing feeling. Quickly spread into my chest and head making me feel nauseous. Felt really ill for about 2 hours. It's been like this with apixaban and riveroxaban in that it takes 3 or 4 doses to build up in my system before the side effects kicked in. I really am at my wits end - there's no other options until I get to the warfarin clinic which may be another week.

[CDreamer in reply to Gilldy]

Never, ever take it just before bed! You are asking for trouble.

Always take with food - but never with any carbohydrate such as bread, biscuits etc. - and as someone else has already said, drink a full glass of water, not milk, with it.

Give it a few weeks as I had some side effects with Dabigatran which did subside following this protocol but it takes time for your system to adjust.

Interestingly I have absolutely no problem with Apixaban.

Have you looked at your diet generally? The things that really help improve my gut health were - going gluten and dairy free, taking pro-biopics, eating sprouted seeds with green salad every day, only eating organic produce. If I had to pick one thing - organic produce.

I believe that gut health is the barometer of our general health, improve that and you will be better.

Dabigatran has short half life - 12 hours - That is is why you take 2 a day, it is not like Wafarin which takes a long time to clear your system.

Do hope you get it sorted soon as it will be really important for you to find something that works to prevent another stroke.

Best wishes CD.

[TenorJK]

Hi Gilldy I had very bad side effects with both Apixaban. And Riveroxaban It affected my kidneys after taking for 2 weeks bad back, water infections had to have antibiotics and it made me feel rotten. I did persevere but could not stand it so am on warfarin which is far better. Every one is different you have to be openminded and at least try these drugs but they don't suit all.Best of luck

[Gilldy in reply to TenorJK]

Thanks TenorJK sorry they didn't work for you but glad it's not only me. I hope warfarin suits me it's just the thought of taking another dabigatran pill in an hour- I don't feel too bad at the moment- just tired.

[TenorJK in reply to Gilldy]

Gilldy. If it makes you feel bad after taking this one I would definately get advice from a professional .

Don't suffer in silence when perhaps there is a simple answer. Good luck

[Gilldy]

Thanks - my gp admits he knows little about the new NOACs but also has me down as anxious which to be honest I don't think is the case. I'll have to take another 3 pills before i can get an appointment Monday unless I finish up at the hospital. To be honest if I can't take any if the 3 NOACs it only leaves warfarin which will take ages yet. I can't not take them for obvious reasons so am feeling very frightened.

[CDreamer in reply to Gilldy]

I totally get why you are so frightened - another word for anxious - anyone would be - your doctor is noticing this which is good, it's not a label.

Unfortunately anxiety also gives us physical symptoms, especially if subliminaly we don't want to do something like take the meds - believe me when I say I know from experience! I will do anything to not be on meds!

May I suggest that you look at ways to cope with anxiety which can only help your general wellbeing, breathing exercises above are really helpful but you need to practice something daily - yoga, mindfulness, exercise such as swimming, walking in nature, painting, listening to music - anything that helps you relax your muscles and go aaaaahhhh.

When we are anxious, our thoughts speed up and worry thoughts become chronic - this is a real danger sign that you need to take action.

Coping with any chronic condition will automatically cause anxiety.

Best wishes CD.

[Mike11]

You could try Warfarin AND Lanzoprazole. Works remarkedly well for most people but of course no guarantees.

[Gilldy in reply to Mike11]

Thanks I'll try that when I get my warfarin hopefully next week 😊

[Redders]

Hi Gilidy, I've been on dabigatran for about 12 months now and hav'nt had any side effects at all. Hope it's the same for you. Good luck and health. Val

[millie-becca-187]

Hi I've been getting really bad, constant pins and needles in both hands, arms and feet. I am taking 20mg 'Rivaroxoban' could this be a side effect of the tablets.

Grateful for any answers

[nettecologne]

Would you mind posting the 17 side effects? i know it's a lot to ask, but I am really interested and do not believe they are caused by anxiety (followed, yes that is possible).

I had a lot of problems too with three of the new NOACs. Tried Lixiana (normal dose), Xarelto-low dose and Eliquis-very low dose. Couldn't manage on any of them. Now on Warfarin. Better, but have not yet decided, as still side effects, only less and more bearable than on the new ones.

I had liver trouble, kidney and bladder trouble, hands and arms numb and tingling feelings. Also fuzzy brain, no concentration, on Lixiana anxiety ( I do not ever have that normally, but the liver dysfunction caused by Lixiana made my thyroid levels drop and whoops). I developed a sun allergy (3 min in sun- iching all night). Xarelto was by far the worst- kidney trouble with bleeding and hospitalization, throat always painfully raw, cervical spine so bad I could barely move my head. Those are only the more debilitating side effects.

I have had chemo for cancer, so of course doctors are quick to blame that for my problems with NOACs. But I think there is a lot not yet known about them and the list of side effects on the insert of NOACs will get much longer over the years.

[Gilldy in reply to nettecologne]

Hi nette cologne - so sorry you've had such an awful time particularly on top of chemo. I agree there are a lot of things they don't know about these drugs yet. Regarding my side effects on apixaban I'll try and list them but I'm in bed at the moment and can't see my original lust which I showed to the doctor.

Headache, can't concentrate even to read a book. Neck ache, Muzzy head, queasy stomach, itchy rash on neck and head, pains down front of legs, urine retention, sweating, going hot and cold,no appetite, awful back ache, tired to the point of cant walk 100 yards

That's as far as i get at the moment - you have to be experiencing it to get the full list.

☹️

[nettecologne in reply to Gilldy]

Not really on top of chemo- I had chemo and herceptin in 2013/14. But docs are quick to put any side effects down to this. Even if in between there were two years without this stuff and it started/changed when on NOACs.

[Gilldy in reply to nettecologne]

Yes some doctors just don't listen- the one in a&e today was great - really seemed to care. She gave me 3 separate lots of medication just to look after the period till i get into warfarin- very thoughtful.

I take it chemo doesn't help with anticoagulants? It's awful having more than one problem isn't it?

[Whimsicalitys]

Hi! What is it you are experiencing? There is no antidote for this med when you go off....you need the two... what did your doctor say?

[Gilldy]

Hi - update - i rang 111 for advice to see if I could take one of the NOACs already in my medicine cupboard as although the side effects would be bad they were preferable to dabigatran. They strongly insisted on sending for an ambulance so I finished up in a@e. The staff were great but i was still lying there 4 hours after my pil was due. Anyway finally spoke to the doctor who was lovely. She was very sympathetic and suggested I take the least evil of the three whilst she tried to speed up the warfarin clinic. Back home now in bed and going to catch up on my sleep. There were a few humerous moments when my husband carried my drip whilst i got out of bed for the loo and then realised he was going to have to come in with me whilst i did a urine sample!

[nettecologne]

healthunlocked.com/afassoci...

Did you find this?

[Gilldy in reply to nettecologne]

Thanks - just looked at it- very interesting!

[JayDW]

I've been on dabigatran (Pradaxa) for about three months now, with little trouble.

I had a spell when I got excruciating "heartburn", but I discovered I was not taking enough water with it. The leaflet does spell out that you should take it with a full glass of water.

I do still often get some indigestion after taking it, but usually it soon passes. If not a little extra water usually does the trick.

Hope you soon get sorted with something that suits you.

Also, I understand it takes about 24 hours to work out of your system, but am not certain of this.

[ruskin10]

Hi, I was on apixaban but had headaches most days so they changed me to dabagitran. Still get bad heads some days and very fatigued some afternoons but not as bad. Dont know if its the NOAC or the nebivalol (beta blocker). Pat

[Gilldy in reply to ruskin10]

That's the trouble with being on more than one medication isn't it? Im on bisoprolol which doesn't cause me any problems and statins which make me tired - the NOACs however- I seriously feel like I've been poisoned! I'm just on riveroxaban now till i can get an appointment at the warfarin clinic - hope that's better!