Chronicles of the Heart, Part 46 – really the end for Nebivolol…

Re-trying this drug has ended in disaster.

Starting at 1.25mg, the lowest dose for heart failure, confirmed that prescribing the lowest dose for hypertension, 5mg, and utterly ignoring my heart failure was grossly irresponsible. I.25mg caused no problems. Sadly, its effects on my tachycardia were so variable as to be inconclusive, so after a week I increased to 2.5mg, which brought my heart rate down to the low 60s.

Mostly, though, it settled in the low 70s depending on what I’m doing – I’ve just been into the kitchen (I wrote this bit about 6 hours ago), to stir a pan of soup, hardly arduous, but it sent my heart rate way up. I don’t know what the max was, but when I checked after I’d been sitting here for a few minutes, it was 103 – way too high, though it’s coming down. Not interested in my blood pressure at this stage, I’m more concerned with keeping my heart rate down and not blowing a gasket.

Today, though, I woke up to the worst asthma attack I’ve had in years (I said that a couple of months ago – this was far worse and went on for much longer), which took about 10 squirts of Ventolin, plus serious abuse of my other inhalers, to get back under control. And it keeps recurring, though not as bad as the first one.

This has always been the big risk with Nebivolol, and why I’ve said it should never have been prescribed, but until today I’d got away with it. Not any more. It’s also, in the past couple of days, triggered several relatively minor angina attacks.

Tomorrow, then, I’m going back to 1.25mg for a few days, then stopping it and calling it a day. I can’t just stop it now, I have to taper off or it could trigger catastrophic heart failure. That’s another reason it shouldn’t have been prescribed – it can  make me seriously ill (and has), but I can’t stop taking it as that might kill me. What sort of incompetent fool takes that big a risk with a patient’s life? OK, I knew the risk, but I didn’t know I’d have to keep taking the bloody drug for a while, even after it had proven dangerous.

Right now, emotionally as much as physically, I’m a wreck, and coming seriously unravelled** – I just can’t see any way I can make progress, and I’m not due to see the bloody consultant until January, not that I think it will do me the slightest good, and I seriously doubt I’ll be going. Assuming I’m still here, which is by no means certain – and if I am, I think I’d be foolish to give the same clown another chance to fuck with my life. And, Arrowe Park, if you take exception to that, or the previous para, too damn bad! It’s nothing but the truth so if you don’t like it, fix the problem – it’s your bloody inept doctor, after all.

**Can’t even ease the pressure by getting drunk – I seem to have developed a serious intolerance to beer.

There is a new drug for heart failure, Ivabradine, which I had a close look at a while ago, here only to find it was being hugely overhyped and claims for its safety didn’t hold up when examined in detail. Still, I’m out of options so I might ask my GP about it.

Actually, not entirely  out of options, I still have Digoxin. There are no major interactions with anything I already take, so it’s probably worth a try – with care, as it has the potential to be a deeply unpleasant drug. It has, however, been around a long time, so there are no mysteries, other than the normal one for me – how will it interact with the drug cocktail I already take?

As I said, there are no individual interactions, but how it will react when added to an existing multi-drug cocktail is very much Terra Incognita.

There’s probably dragons, too…


21 thoughts on “Chronicles of the Heart, Part 46 – really the end for Nebivolol…

  1. Bloody Hell Ron! So sorry that you are unwell again and that it should not have happened if they had listened to you. As I told you I am on 5mg of nebivovol and my BP is pissing about now and also have a feeling of constriction of throat so not feeling good.

    I would ring them up and ask to be seen as emergency.

    Keep your chin up and try and stay safe

    Chris xx

    • Wouldn’t set foot again in Arrowe Park if my life depended on it, Chris. Sooner die here than have a worthless bunch of quacks kill me through carelessness and stupidity.

  2. you dont have to be on THAT many drugs for digoxin to interact badly with them. 15 years ago i was on nifedipine for suspected angina, and 2 turbo halers for asthma. cant remember names now but one was blue (not ventolyn) reliever other was brown,preventer think that was Beclaforte. plus serevent .inhaler .. also on thyroxine. had been on digoxin in Bedford for about 5/6 years tho rarely had used it. (rather flat terrain there compared to yorkshire where i had just moved back to) i lived on a hill and so i had taken some before setting off to walk to the bus stop. all of a sudden i started shaking from head to foot, made it halfway down the hill and stopped at a friends there. called the doc from there. had been put on some antibiotics if i remember rightly. some new and different tablets to what i had had before anyway. and apparently it was the digoxin reacting with them. was told not to use the digoxin again till i had finished the course of tabs, i never did use it again, shortly after i landed in hosp having “overdone it” (that was the diagnosis…had been walking and done too much they said. was told i had not got angina, neber had had angina and the symptoms were all coming from the spondylosis in my didnt need the nifedipine either.

  3. Oh Ron, I hate to hear that I wish there was something to help you extend your life I’d really miss our online conversations and reading your posts. New medication is coming along all the time, we will think positively, in the meantime I’ll keep you in my thoughts and prayers. 😉 xx

    • Thanks, Bev, but I’m not dead yet. And if I stay away from Arrowe Park it might actually extend my life expectancy. Let’s face it, they’ve done little but screw it up so far.

      I’ll get Nebivolol out of my system, have a break, then give Digoxin a try. Its main function is to improve heart function, which is what I need.

    • Tell you what, Bev – in three weeks time I’ll be 68 – an age I never, for much of my life, expected to see (I don’t actually want to be 68, frankly, for all sorts of reasons, but that’s another story, with “old fart” in it!).

      I thought, last week, that it was time I had a new avi pic – the one I have now dates from a few weeks after my 60th birthday, so last Monday I decided I’d take one in the pub, where there was a brightly-lit mirror and it scared the hell out of me – I got a photo of a stranger.

      I know I’ve lost quite a bit of weight the past couple weeks, a good stone and a half in 2-3 weeks – so I got a photo of an old bloke who looked terribly ill, and gaunt, whose clothes hung off him as if they were way too big – which they were, of course – and somehow I just hadn’t noticed.

      OK, I know it’s probably inevitable, but I’d looked more or less the same as I do in my avi pic for so long, except for a few more grey hairs, that the change, in just a few weeks, was shocking.

      Call it hubris if you like, it probably is, but I’m finding it immensely hard to deal with. I’d never thought of myself as vain, though I’d never leave home without making sure I looked as good as I could, so maybe I am but, hey, that’s me.

      Old and sick, apparently, is also me, and I’m still profoundly depressed by it, not helped by the fact that there’s no logical reason why I should be.

  4. Ron, your hilarious! Your mind is very sharp, gray hair or an extra line here or there are not important!

    I wish I could loose weight that easily, I put weight on just looking at food and as my mobility has greatly decreased this last couple of years my weight has increased.

    It’s a battle in itself not to let that damn depression get a hold of you, luckily we have each other to bitch and mown too.

    I wish this bloody cold weather would go away I’m freezing!

    • Hi Bev,

      I dropped down to one small meal a day as my mobility decreased – made no difference at all. If you’re not active, you need to get down to about 600kcals a day – borderline starvation level. And you’re so damn hungry all the time it just doesn’t work.

      I’ve gone back to drinking milk after a break of about 6 weeks – I figure if I can’t have beer I might as well have something I like! I can still drink wine, apparently (just getting to the end of a rather nice Madeira). Wine’s no good in a pub though – it’s expensive rubbish – £14 a bottle for stuff that costs under a fiver in the supermarket. So, as I won’t be going to the boozer, I treated myself to another bottle of Madeira. It’s a hard life 😉

      Yep, damn cold here, too. and rained non-stop all day – seems to be the same all over.

  5. I had a different weekend, my daughter and two of her friends and two carers went away for a short break -left Saturday and got back at 1 today. My life long friend who is a nurse came down yesterday – she lives in Kendal and we went to the Trafford Centre stopped and had tea and a couple of drinks at a local restaurant last night and then a couple of Ruby Relaxer cocktails at home last night and hangover this morning, but had a good laugh. She’s back at work tonight on night shift, yuck.

    It’s rained here all day and most of last night too, we live pretty close to one another.

    • Really? How close – without giving too much away in public? I thought you lived in Hull – must be thinking of someone else – @nessthehat, I think.

      Just watching a foodie prog – there’s Santoku knives everywhere. Bought myself one a few months ago – absolutely fantastic tools for chopping and slicing veggies.

    • That’s a fair hike . . .

      My iPad OS has just been updated and the now famous mapping fubar insists I’m living in the Charing Cross Hotel. Bloody colonial clowns!

      Most of the local pubs are misplaced or missing, and an antique shop that’s been a grocers/greengrocers for nigh on 20 years is shown – in the wrong street!

  6. Good job it’s not a sat nav.

    When I have an apt at Liverpool Hospital depending on time of day it’ll take me 20-30 mins driving, having lived in the US for 34 yrs that’s just down the road.

    Looks like another day of rain ;-(

    • It gets better – if you zoom in they have about 4 businesses occupying this site, none of whom are, in reality, even close to it. The scary thing is it’s based on Tom Tom satnav data – probably explains why huge Polish trucks end up in rivers, or trapped in a tiny Cornish lane!

      Must have a look at Liverpool’s map later – see what they’ve done to that.

      And, yes, it’s wet again here, too. Haven’t had the wind they forecast though, which is something.

  7. My sat nav is a Garmin with maps for Europe and the US, it’s never taken me the wrong way yet and also let’s me know where there are Cameras.

    Come home to here Alexander spewing more lies and bullshit! I feel like been sick.

    • Yep, mine too. I never considered buying any other brand, as Garmin have been in satnav pretty much since day one. Years before they appeared in cars they were making hand-held units for backpackers and hikers – I figured if they can’t get it right, no-one can.

      Useful for figuring out the actual speed of my powerchair and scooter too!

  8. I’ve had to break down and turn the heat on, I’m freezing! It’s because I’m tired and hungry (dieting), I have two robes on top of my clothes and wrist warmers and I’m freezing through to my bones. I’m back forgot to post and have had my head covered up trying to warm up. I’ve had something to eat and have warmed up a little bit, but really tired so think I’ll have a little to eat and have an early night.

    • Sounds like a plan.

      One thing about living here in the old fart’s ghetto (been here since I was 51), is that it’s cheap. Just as well as I’ve hardly had the heat off this past year – can’t get warm, think it’s the sodding heart thing.

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