So many side effects with blood thinners

[Norfolk_spaniel]

I posted earlier this week about constipation with epixaban. I had a long conversation with my GP yesterday and because of several side effects from edoxaban and epixaban, on the advice of my cardiologist she now wants me to try rivoxaban. I have been suffering with dizziness, nausea, and heart palpitations with missed heartbeats which makes me breathless. The palpitations started about 10 days ago just after I started with apixaban. It is further complicated by the fact that I had covid very badly in February. I'm not expecting rivoxaban to be any different. Has anybody else had this medication intolerance and where do we go from here?

[FancyPants54]

You are perhaps going to have to put up with some side effects until your body gets used to the drugs. You need it, so you will end up on Warfarin, which is more of a faff, if you can't get through the side effects with the anticoagulants. None of us feel very well when we are first diagnosed for many reasons. But things tend to settle down. Talk to your GP, but be prepared to give it time to settle.

[Norfolk_spaniel in reply to FancyPants54]

After 3 cardioversions in 8 months, I had a successful ablation in October. I was taking edoxaban for all of 2022 with side effects but knew that I had to because of AF and for a while after the ablation. In my case, the side effects just don't go away.

[BlueINR in reply to FancyPants54]

Been taking warfarin for 14 years due to mechanical heart valve. No problems or side effects. I self test as directed, report results and dose adjusted if needed. It's neither awful nor difficult. None of the newer anticoagulants can be used with mechanical valves.

[FancyPants54 in reply to BlueINR]

Well it's the right medication for your condition so I'm glad it works well for you. Warfarin gave my Dad a lot of horrible problems.

[BlueINR in reply to FancyPants54]

There is no other anticoagulant to take because of a mechanical valve. Was it staying in target range that was hard for him? Haven't heard anything about side effects with the med and I participate in other forums.

[FancyPants54 in reply to BlueINR]

It was problems with bleeding and bruising and waking up with a completely blood red eye that sort of thing. He was always being tested and regularly having his dose altered. They could never seem to find a sweet spot.

Knowing what dad went through and eventually watching the way he died meant I was totally freaked out knowing I had inherited his Afib.

[sunlovah in reply to FancyPants54]

I'm experiencing the same, running the thinner gauntlet has made me feel wretched, only Warfarin left. How long to get used to them are we talking weeks or months?

[CDreamer]

when on Rivaroxaban ensure you take with a substantial meal - the don’t tell you that! You may not have the same side effects but ensure you’ve had Blood tests for liver & kidneys before starting.

I’m on Apixaban and ne’er had any problems but everyone reacts differently.

[Dollcollector]

I am on Rivaroxaban. I have never had any side effects from this anticoagulant.

[mjames1]

If it turns out you cannot tolerate any of the NOACs, your options include: (1) More aggressively treating the symptons from the NOACs; (2)re-e valuating your risk score i.e. if NOACs were borderline, not taking them may make more sense then taking them; (3) Ask if a dose reduction is feasible; (4) Try Coumadin; (5) Consider an LAA Closure device; (6) Research PIP anti-coagulation.

Jim

[MummyLuv in reply to mjames1]

Great summary of options, I would add to consider a PiP closure device, consider mini maze if it is available to you. Being unable to take anticoagulants is one of the reasons people opt for mini maze if they are symptomatic with afib.

[mjames1 in reply to MummyLuv]

Thanks. Yes and that was included in # 5 ie "consider LAA closure device".

Wolf Mini Maze (WMM), for example uses the Atriclip LAA closure device. Other LAA closure devices include Watchman, Amulet and Lariat.

As you know, Atriclip is a bonus with WMM, however you can get Atriclip without having WMM. Something I might consider.

Jim

[MummyLuv in reply to mjames1]

yes there are two ways surgeons can close the left appendage - one is atriclip (which is what my surgeon used and as you say what Dr Wolf uses) and the other is to have the appendage stapled. Both achieve the same thing.

[sunlovah in reply to mjames1]

Do these things stay in for life or removable?

[10gingercats]

If this is your protection against stroke risk medication do not risk not taking one of them.It may well take a while for your body to settle into one of them but the alternative is pretty dire.

[Ppiman]

Neither rivaroxaban nor apixaban have caused me any side effects at all, but I have heard that they can affect some people's stomachs. In that case, the stomach can, itself, push easily physically against the diaphragm, and then that can touch against the heart. In prone individuals that can set off ectopic beats and mild racing, even AF. Even without that, it can increase adrenaline levels and that can produce its own range of effects. That sounds a plausible explanation, and, if that is the case, the effects won't bring you to any harm and should settle eventually as you get used to them.

It's a thought! You wouldn't want to be on warfarin if you can help it owing to the multiple and individual dosing and testing needed (and, of course, that might also cause the same side effects).

Steve

[Norfolk_spaniel in reply to Ppiman]

Thanks. I think you may have hit the nail on the head. I had to call 111 yesterday who sent paramedics out because I was having rogue heartbeats and breathlesbreathlessness. Strange heartbeats were seen on the ECG which they could not identify but most of the time I was in SR. Their only advice was to go to A&E which I declined due to bad experiences there last year.

[Ppiman in reply to Norfolk_spaniel]

I’m surprised they couldn’t say what they were (well, I think they use some form of AI to help them as they are not doctors). The two types beats are Kelley either from the top of the heart (PACs) or from the bottom (PVCs). Both cause a “bump” feeling and the sense of a “missed beat”.

If you are otherwise well, I’d phone your GP in the morning and try to get an explanation. If you aren’t well, then A&E is the place, much as those places are awful these days.

Steve

[Cassag]

I am using one called dabigatran. I did read that it can inflame the oesphagus if not swallowed with some food to insure it gets down to the stomach. Same with a lot of medications I imagine

[Ronnieboy]

I take rivaroxaban and don't suffer any heart palpitations,I've murderous right hip pains and constipation is around but I don't put that down to the medication,although,I could be wrong.

[Tapanac]

with rivaroxaban I kept getting UTIs so was changed to apixaban. No problems there, but I have noticed (snd don’t know whether it’s to do with apixabsn or not) but I have a tremendous lot of thread veins especially on my feet and legs and itching appeared these last few years

By the way not because of any pills, but I have suffered with constipation for years and was always taking laxatives which is not good , but I have found buying soft prunes snd figs from the cooking section in supermarket that 4 prunes snd 2 figs work a treat snd no worries that a laxative could catch you out

[Qualipop]

I have lot of intolerances to drugs but much of it relates to fillers or colourings so I try different brands of the same drug and usually find one that's ok. You do need to give it at least a month for side effects to ease off.

[Dodie117]

have you ever been on warfarin. I changed from warfarin to Apixaban for convenience and works fine for me. However, if used properly warfarin can be very effective and once you are on an even keel, you can self test most of the time and tweak dosage. I would go back on it if I couldn’t get o. With DOACs. It works in a different way to DOACs so it is a feasible option if the others fail.

[sunlovah in reply to Dodie117]

How does it differ in working? Am I right in thinking that as Warfarin is tested it can be more accurate as opposed to DOACS which may be over generous in doseage.....just a thought.

[Dodie117 in reply to sunlovah]

I don’t think that’s really accurate. They are two very different treatments - warfarin managing Vit k levels but DOACs working on the actual coagulant.

My vague non expert understanding!!

The scientific explanations beyond me but you can check it out online.

[Dodie117 in reply to sunlovah]

“Warfarin competitively inhibits the vitamin K epoxide reductase complex 1 (VKORC1), an essential enzyme for activating the vitamin K available in the body. Through this mechanism, warfarin can deplete functional vitamin K reserves and thereby reduce the synthesis of active clotting factors.

DOACs intervene directly in the coagulation cascade and inhibit directly specific clotting factors such as Factor Xa and Factor IIa (thrombin)”

😂

[sunlovah in reply to Dodie117]

Thanks for your reply, was just Googling. wondering if I would swap one lor of side effects for another? Suppose I won't know unless I try.....my poor body!

[hyperchill]

My husband couldn't tolerate these drugs either - first Xarelto (rivaroxaban) and then Eliquis (abixaban). (We live in the US). His joints hurt so bad he could hardly move and he was wasting away. He's 75 and survived Cardiac Arrest when he was 60. Had an ablation at 63 and had managed to do pretty well without AF for years taking only a statin and baby aspirin. Then had an Afib incident last June that put him in the hospital overnight. That's when the doctor put him on the blood thinners. His reaction to them was immediate and very negative. After a few weeks it was obvious he wasn't going to get his strength back. He didn't want to move and was just getting weaker. We considered another ablation but the doctor said he wouldn't know where to ablate (after my husband wore a heart monitor for a few weeks). We considered a "Watchman" but it would have meant taking the anti-coagulants for several months - which just didn't seem feasible. I did a lot of research and found books about reversing heart disease with a plant based, whole food diet. Dr. Esselstyn and Dr. Greger and T. Colin Campbell. Started the diet in late August - plants only, no oil, no dairy, eggs, no meat or fish. Huge variety of fruits, nuts, vegetables, starches and grains. He had his blood work done in January and it was so positive his doctor took him off all remaining meds - which was the statin he'd been on for years. (My husband weaned himself off the blood thinners shortly after we started the diet). He dropped 20 lbs, I dropped 13. His doctor said there's no need for meds or procedures at this point. He said he's aware this can work for people but he doesn't recommend it (and he never recommended it to us) because he doesn't think people will stick with it. (groan) We are so motivated and feeling so good we have no desire to go back to the old ways of eating. I don't know if this would work for you but I thought I'd share our experience. I wish I'd known earlier but glad I found out when I did. Oh- you have to supplement B-12 with this diet. We've found a couple other supplements helpful too. It's so hard to navigate these waters. I know each person is different but we really felt there was no hope and that we had nothing to lose by giving it a shot. We're both very glad we did.

[JOY2THEWORLD49]

Hi

Try COLOFAC 140mg with a full glass of watere, 1 hour before a meal.

It relaxes your bowel and colon.

cheri JOY. 74. (NZ)