Feeling Toxic?

[Nanfranz]

Ever since being put on Flecainide, Metoprolol and Xarelto a little over a year ago I have not felt like myself. At the risk of being written-off as too dramatic I will say that if asked how I am feeling I would have to use the word "toxic". It seems to go beyond just medication side effects such as memory problems, itchiness, sleepiness. I've experienced side effects of other medications in the past, but this feels different. Just wondering if anyone else has ever felt slightly "toxic" on any of the above medications.

[jeanjeannie50]

Hi Nanfranz, I too take Flecainide 2 x 100mg and Metoprolol 2 x 12.5mg. I'm not on Xarelto, but Warfarin and I feel fine. What dose of Metoprolol are you taking, it has quite a strong effect on me so I can only take a small amount. I once took a whole tablet by mistake and it made me feel dreadful.

Jean

[Luludean in reply to jeanjeannie50]

Flecanaide caused horrible nightmares.

[clarence16 in reply to Luludean]

Me too.

[Nanfranz in reply to jeanjeannie50]

Jean, I apologize for taking so long to respond to your reply! To answer your questions about the meds, I take 50mg Flecainide x 2 per day, with recent instructions to experiment by increasing it to 3x per day. Remembering how I felt originally on a higher dose, I have not changed the regimen, though on a couple of occasions I have taken an extra dose if needed (that is, if a stubborn afib episode comes along). The Metoprolol I take at night -- 25 mg (though original dose was 50 mg, later changed by cardiologist). The Xarelto was 20 mg with the evening meal, but the doctor gave me six weeks of samples, which are 15 mg, which he said should be fine. I have a followup appointment next week, so we shall see.

[jeanjeannie50 in reply to Nanfranz]

Hi Nan, I don't feel too bad in myself taking Flecainide and I'd rather take it than have AF, but just lately I have had episodes where my memory has been quite worryingly bad.

I've just been diagnosed with an underactive thyroid and I'm hoping that taking pills for this will improve my memory. Poor memory is one of the symptoms as is lethargy and itchiness. Have you had your thyroid checked?

Jean

[Nanfranz in reply to jeanjeannie50]

Oh Jeanie -- I hear you on the memory problem and itchiness! I have been appalled at the changes in my formerly excellent memory since I started taking Flecainide 15 months ago. When I reported it to the cardiologist, he shrugged and reminded me that most people experience gradual memory issues as they age (in other words, don't blame the medication, blame your age). No big deal, said he. Well, to me it's a worryingly big deal, and I told him that this change happened suddenly, not gradually, soon after starting on Flecainide (plus Metoprolol and Xarelto). I haven't mentioned the itchiness to him.

As for the thyroid -- thank you for the suggestion, but my thyroid gland stopped functioning 55 years ago ago and I've been taking Levothyroxine since then. The last time the level was checked was early this year and all was OK as usual. I do hope that now that you're on thyroid pills you will experience a swing back to normal on the memory and itchiness, Jean! Wouldn't that be great! Please let us know!

[jeanjeannie50 in reply to Nanfranz]

Have you looked at the Thyroid UK website on Health Unlocked? Thyroid levels can appear normal to Dr's, when in fact they're not. I think it's something to do with levels of the hormone T3 not being right and usually Dr's don't check that hormone.

Poor memory! Well a week or so ago, for quite a few minutes, I couldn't remember what year it is now and panicked. It eventually popped into my head 2017, but that episode has really worried me!

[Nanfranz in reply to jeanjeannie50]

Thanks for that suggestion, Jean! I hadn't thought of the possibility, but now that I think about it, I think the report earlier this year showed T3 and T4 at normal levels.

And your memory anecdote --

Wow, I could have written that myself! I know that panic! Have had a number of such episodes since being put on the afib meds. One example: Last week I looked at a list of my medications (some of which I've taken for years) and although the names seemed familiar, I could not for the life of me identify what they were for. Gradually it all came back to me, but while it lasted it was really frightening. I'm finding now that every day brings a few less dramatic incidents which clear up a lot faster. I find it oddly comforting (for want of better word) to know that others are having similar memory lapses which seem to be attributable to the afib meds.

[KathFrances]

I've only had experience of Xarelto, and did feel highly toxic on it, as if I was being drugged and not myself. And somehow a mental connection missing, as if I couldn't quite connect up my thoughts properly. I found it disturbing and when I told the cardio, he told me to stop taking the Xarelto for 48 hours to see whether these symptoms went. They did and after 36 hours, I felt back to being myself again, huge relief. So then I immediately started on 110mg Pradaxa and am so far having no problems with it. As long as I drink a glass or two of water with the dose, I don't get any heartburn. That's just my experience and I know lots of people have no problems with Xarelto - all individual.

[teach2learn in reply to KathFrances]

Wondering why not Eliquis, which was my Doc's first choice. I've had no side effects whatsoever, other than the easy bruising, of course.

[KathFrances in reply to teach2learn]

I asked the cardio which one he himself would take, if he had to switch from rivaroxaban and he said dabigatran because it has an antidote. It was the one I was going to suggest, because I saw a recent study that was favourable. It's completely individual, of course, so if I have any trouble with this one, I'll try apixaban.

[teach2learn in reply to KathFrances]

Oddly, for a couple of years now it was Pradaxa and one other that was the subject of suits here in the US, until recently. Now Eliquis too, of course. All driven by lawyers, I'm sure.

[KathFrances in reply to teach2learn]

Have you read any of the accounts of their experiences from people submitting lawsuits? Makes harrowing reading, these people are devastated. I question the integrity of companies issuing drugs that have to be taken for life, yet their effect (and thus minimum dose needed) can't be measured and there's no antidote.

[teach2learn in reply to KathFrances]

No, I haven't read any others' accounts, just know about the lawsuits from the endless tv advertisements by law companies. I take less than the prescribed amount myself because of those very fears, however; based on the easy bruising I get when I barely scratch my arm, I can only imagine what a traumatic accident would cause internally! An ER doctor, who sees the devastation it can cause, whom I saw during a bout of diverticulitis, expressed his concern about my taking it while not actually experiencing afib, but because I'm 70, female, blood pressure issues, etc. My CHAD score says I should. So I compromise with only one dose at bedtime, when my irregularities are greatest. So far, so good.

[KathFrances in reply to teach2learn]

So interesting that you take one dose at bedtime! I've wondered about taking only one dose as I'm 66 with no other cardiovascular issues and only occasional PAF. Cardio said I'm relatively low stroke risk but because of the CHADs score of 2, I should anticoagulate. I'm on the lower dose of 110mg dabigatran (for over 80s etc) instead of the full dose. I guess we all find the point at which we feel best, balancing fears and risks. I suspect that in a few years time, they'll probably discover that many people have been anticoagulated unnecessarily because of the lack of sophistication of CHADs and doctors rushing to the blanket approach of signing everyone over 65 with AF up to anticoagulation. Sigh.

[teach2learn in reply to KathFrances]

Exactly. There are many individual factors involved that, as with so much in medicines, are not taken into account. My EP, who did my ablations and prescribed, didn't want to hear it when I told him my dosage decision, but didn't actually object, either.They have to cover themselves by going with protocol, but it is my decision, ultimately.

[Hidden]

Toxic is a word I use to describe how I feel generally. I think I am toxic and I know I have problems with my liver so maybe that is the same problem for you. I've not had the cocktail of drugs you are on so cannot comment. I was on Flecanide and I think my body tolerated it quite well but didn't like the Apixaban which is probably the opposite of most people who makes comments on this site. We are all different. I felt VERY toxic on Amiodarone. Tricky to work out which one is affecting you but I would attempt to discuss with doctor changing them maybe one at a time to see what helps. But basically I understand and wish you luck.

[Mike11]

Everybody is different and some drugs suit some and don't others. If the situation can best be described as toxic then you really do need to try the alternatives. Go and ask your consultant to send a list of possibilities to your GP and try then each for a few weeks until you find the ones that are best for you.

[Buffafly]

When I was on Propafenone which is the same class as Flecainide I felt toxic! Rivaroxaban doesn't affect me in that way but I do have spells of lethargy, who k owe why? I made a GP appt for a check k up because Rivaroxaban says you should hV a check if you feel weak etc but by the time the day arrived I felt ok 😤

[degsy76]

hi nanfranz i take xarelto hun im taking bisoprolol too ive not felt right since been on them not seen cardioogist for 2 yrs feel light headed most of the time too

[irene75359]

This is such an interesting thread. The older I get (I am 66) the more toxic I feel taking ANY drugs and I missed my old drug-free life so much when I was diagnosed with AF and had to start taking warfarin, amlodipine, flecainide and bisoprolol. There is no question about taking warfarin but I now take flecainide as a PIP, cut my dose of bisoprolol to 1.25mg a day and am looking to reduce the 5mg of amlodipine as my blood pressure is well below danger levels. All this I have done with the help and guidance of my very helpful GP.

On the other hand...what I happily spend on supplements!

[Nanabrodie]

I was on Flecainide and Metropolol but couldn't tolerate the two together, blood pressure and heart rate dropped too low and like you felt fuzzy, couldn't concentrate etc. Hospital doctor took me off Metropolol and I stayed on flecainide which gave me no problems. I was told that the mixture of these two medicines do not seem seem to suit everyone.

[Nanfranz in reply to Nanabrodie]

Very interesting, Nanabrodie! I was wondering if I should ask my cardiologist about the need (or no need) for Metoprolol, since I already take Benicar for blood pressure. Having read of your experience I will definitely ask him. Thank you!

[Amcech]

I felt terrible with the same combination of drugs. It started when I started flecanaide and I had vision problems almost immediately after starting flec. I stopped taking the drug after 3 weeks and felt so much better! I still have some vision problems but nothing that is damaging my eyes according to my eye doctor.

[Nanfranz in reply to Amcech]

Amcech -- thank you so much for sharing this experience! It assures me that I'm not imagining things. Are you now on an alternative medication for the afib?

[Amcech in reply to Nanfranz]

I'm now taking propafanone and coreg (carvidolol) because I've been having major issues since my third ablation at the end of May. My echo showed an ejection fraction of 40-45% so to prevent CHF and to strengthen my heart they started the coreg. I had a failed cardioversion last week and am scheduled for another cardioversion in 2 weeks. I'm only 61 so am hoping something works soon for my afib.

[Tracyrdh]

I felt horrible on flecainide. Short of breath and blurred vision. I do not tolerate medications well. Always seem to have the side effects even rare side effects. Maybe talk to doctor about different medications for rhythm control. Or possible an ablation

Then maybe you can get off some of the meds

[sleeksheep]

I had bad nausea with flecainide and my GP switched me to a half dose for a week to see if I could tolerate it 25mg x 2 and the next week (or there abouts) I was on 50mg morning and 25mg at night. Eventually I ended up on 50mg X2 with no side effects at all.

[Nanfranz]

To everyone who responded to my post "Feeling Toxic": Many thanks indeed for each of your replies -- and apologies for taking so long to respond. For some reason (maybe because too much time has passed since the original post?) I'm unable to add a response to each individual person, but please know that I read each one more than once and greatly appreciate all your input. Since discovering this site I have felt less alone in this afib experience. Consider yourselves hugged with sincere affection and appreciation! Thank you!!

[Vony]

My vision was very weird on flecainide and I almost developed peripheral vertigo. It was the strangest sensation. When I used to take the tablet, for the first hour or so I would feel 'spaced out' and my husband used to say I looked stoned for that first hour or two. I hated being on that drug and stopped after 2 weeks. When I was on a different anti arrhythmic prior to flecainide, I actually did to toxic and developed prolonged QT. I am glad to not be on any anti arrhythmics now as they never worked for me and made me feel so odd and so unwell. But on the other hand, I wish I had found one that agreed with me and that controlled my symptoms. Best wishes with getting sorted out.

[Kazibo]

i was on flecanide 100mg 3x day at the beginning of last year (2016). After a month or so started to fell tenderness in muscle areas all over my body, it actually really hurt to just touch my muscle areas - upper arms, thighs chest, buttocks etc. I then felt what i can only describe as lumpiness in those areas that were painful and noticed my veins had become more visible than ever in my chest, upper and lower leg and wrist areas. I thought i might have been going crazy or imagining it untill i asked my nieice and then my partner to feel my arm and leg areas and they agreed they could feel the lumpiness! This really scared me so i stoppped taking the flecanide 3x a day and only took it as a PIP if i had an AF episode.

Within weeks the tenderness and lumpiness disappeared and i've felt a lot better by only taking the flecanide if i need it. Since then i've made sure i eat healthy, drink plenty of fluids, walk the dog regularly and thankfully the lumpiness has gone and i have had very few Af episodes