Chronicles of the Heart, Part 42 – The dangers of Nebivolol…

Nebivolol is a beta-blocker, so it’s probable that what I’m about to describe applies to other beta-blockers too (or perhaps not, as Nebivolol is apparently being looked at by the NHS, as you’ll see).

Simply put, in COPD, even if it doesn’t adversely affect your breathing, it impairs expectoration. Those of you who don’t have COPD or any other respiratory illness in which the ability to expectorate is essential, like cystic fibrosis, might find the following gross. Just so you know.

The first thing I do, every morning – and have for most of my life; it’s not like I have a choice – is cough my nuts off in the bathroom. Deeply unpleasant, often painful, but essential, as it helps clear the crap from my lungs, a process which continues throughout the day, but the first one is the biggie as the toxic gunk accumulates overnight.

And this is where Nebivolol comes in – it effectively inhibits expectoration by thickening the sputum, as far as I can tell. This is not a good thing.

And right now, as I’m tapering off  Nebivolol, the accumulated gunk is coming loose, giving exactly the same symptoms as a COPD flare-up (aka chest infection). Not fun. It suggests, too, that in the event of a respiratory infection, the inability to expel infected sputum could be dangerous.

Nebivolol is a drug I should never have had. OK, I knew the risks in COPD, but I was willing to try it – any problems and I’d have hit 999 faster than you can say, well, 999!

What I wasn’t prepared for was the severity of the other adverse reactions. Not that these are restricted to COPD patients, of course, but just because you dodge the bullet on the big one – that has the potential to put you in hospital or, at the worst, kill you, doesn’t mean you’ll get off Scot free. This is the list taken from NetDoctor  (those in bold are those which affect me):-

Common (affect between 1 in 10 and 1 in 100 people)

  • Headache.
  • Dizziness.
  • Pins and needles (paraesthesia).
  • Shortness of breath (dyspnoea).
  • Diarrhoea.
  • Constipation.
  • Nausea.
  • Fatigue.
  • Excessive fluid retention in the body tissues, resulting in swelling (oedema).

Uncommon (affect between 1 in 100 and 1 in 1000 people)

  • Slower than normal heart beat (bradycardia).
  • Worsening of heart failure.**
  • Problems with the electrical pathways that control the pumping action of the heart (heart block).
  • Visual disturbances.
  • Nightmares.
  • Depression.
  • Indigestion.
  • Wind (flatulence).
  • Vomiting.
  • Cramping pain in the leg (calf) muscles on exertion (intermittent claudication).
  • Impotence.
  • Rash or itching.

**Since nobody is actually monitoring my heart failure, that’s based on how I feel.

In addition to the above there were also auditory hallucinations.

So, while I avoided the respiratory crisis, the rest of this shit has effectively trashed whatever was left of my life.

When my meds were delivered, I was asked if I’d sign up for an NHS follow-up on Nebivolol – something I’ve never encountered in 65 years of being medicated. To me this suggests that there are known problems with this drug.

To try to find out what’s going on, I went to the European Medicines Agency website, to see what they have to say about Nebivolol. As you can see from the pic below, I came up blank.

The results were the same in the second category, too, the common name and active substance being the same. This suggests that the drug is not authorised throughout the EU. Why? Is it known to be dangerous? The blue circle over the word “medicine,” by the way, is just my cursor.

The NHS Choices website yielded the following:-

Other information about Nebivolol hydrochloride:

  • people starting treatment with this form of this medicine will normally be prescribed a low dose. The dose will then be gradually increased. This is in order to reduce the chance of side-effects
  • you will need to be under medical observation for about two hours when you start treatment with Nebivolol hydrochloride or when the dose is increased

As part of the process of assessing suitability to take this medicine a prescriber may also arrange tests:

  • to check that this medicine is not having any undesired effects

None of this happened. The goddamned consultant went straight for the high dose of 2.5mg, when I should have started with the lowest dose, 1.25mg. Currently, as I taper off, I’m taking 0.625mg (roughly – it’s impossible to cut a 2.5mg tablet into quarters accurately).

The clear implication of the second bullet point is that treatment should have been started in hospital, where its effects could be monitored, as should any increase in dose – just one more example of Arrowe Park Hospital’s systemic incompetence.

And one last thought – had I started this drug with the minimum dose, there’s every chance I wouldn’t be in the mess I am now.

Going straight for 2.5mg might well have sensitised me not just to Nebivolol, but to all beta-blockers.

It’s clear, too, that there is no point in ever going near Arrowe Park’s cardiology department again, if this is the degree of fuckuppery I can expect. I am far worse, now, than I was before I saw the last consultant who, in prescribing Nebivolol at a dose double what he should have, has comprehensively fucked up my life. I see no reason why I should trust him not to do so even more severely in the future. Such inexcusable carelessness can kill.**

Will things improve once I put Nebivolol behind me? I have no idea, but as reducing the dose as low as it can go hasn’t reduced the problems it’s caused, perhaps not.

**Note for Arrowe Park Hospital – don’t bother asking me to take this post down, or change it, not without a court order. The same applies to my hosting service, who have given me their assurance that they will not act without a court order.

And as I’ve already said, before bitching at me for telling the truth, you might want to put your own house in order. God knows, it urgently needs it.

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5 thoughts on “Chronicles of the Heart, Part 42 – The dangers of Nebivolol…

  1. Hi Ron,
    I found one of your posts from back in 2009 about COPD: https://ronsrants.wordpress.com/2009/01/17/can-you-stop-copd-from-becoming-worse/ and saw that comments were off, but I still wanted to write.

    Like you, I have had COPD since infancy (complications from an unrelated surgery), and it’s gotten worse over the years, obviously. I was told yesterday by my pulmonologist that he was surprised that I have lived 35 years (diagnosed with COPD in high school). I also have an immune system deficiency for which I take meds. The doctor recently put me on nighttime oxygen, which was fine, but when I saw him yesterday, he said he wants me to wear it when I’m out and about (and even at work) to keep my oxygen level from tanking into the 80s. I’m a newspaper reporter and editor, and I feel that wearing oxygen at work would jeopardize my job and reporting abilities.I could quit my job and stay at home, but I just started here in February and my boss made a concerted effort to hire me to help improve our product. He’s happy with my work, and I feel like quitting on him would just be awful, not only because my commitment to my job but because I would feel like I’m throwing in the towel.

    Frankly, my oxygen levels have probably been low for a couple years at least, but I recently moved and made the decision to get fully tested and go down the path of an eventual transplant if that’s an option. Anyway, since seeing the doctor yesterday, I must say I’ve dipped into a level of sadness that wasn’t there before this point. I’m normally pretty stoic and people say that I never complain. And I’m not going to start now, but I just wonder if I need depression medicine or should I just suck it up. Like you, I enjoy beer, but to drink enough to take me out of the gutter emotionally might be rough on the heart. It’s hard to overstate how much this sucks.

    Any advice you can give that has helped you?
    Thanks in advance.

    • OK, on the O2 front, have you tried a nasal cannula instead of a mask? Not invisible but certainly less conspicuous, especially if you change the tubing on a regular basis (it turns brown with prolonged use). And would it be possible to change the focus of your job so that you don’t have to meet people as much – interview by email or telephone, maybe – a lot can be done via computer that’s traditionally been done face to face.

      As for the depression, are you taking Phyllocontin? That causes B6 deficiency which screws up the serotonin re-uptake mechanism, causing depression. For me, 200mg of vitamin B6 daily fixes it. SSRIs would fix it too, but they cause their own problems – in my case they make me cough until my lungs haemorrhage – so maybe approach with caution.

      Beer will never pull you out of depression – just push you further down – alcohol, in any form, is a depressant. And, as I know from experience, the excess fluid can overburden the heart, though I take my diuretics in the pub, which helps. Probably doesn’t help my kidneys much, though.

      The other thing is that, in chronic illness, depression is pretty much unavoidable – I don’t know a single person who is chronically sick who isn’t also depressed to some degree, including me.

      So seek help, ask for a psychiatric referral – not CBT, it’s a crock – a properly qualified psychiatrist will be much more help.

      Something else which is contributing to your depression is probably the transplant prospect – it’s a huge step and can create a lot of conflicts. Again, a psychiatrist would be the best person to straighten that out.

      Has anything helped me? Nope, I’m dying. Got maybe 6 months unless the averages pan out in my favour, then I might have longer. Still, when I was 17 I was told I wouldn’t make it past 40. 27 years past that, I’m still here. Doesn’t feel like I’m gonna beat this one though.

      Best of luck.

      Ron.

  2. Thanks for your response, Ron. To answer the first question, I’m not taking anything for depression. I know alcohol is a depressant, but while it may make make some people sadder while under the influence, it has the opposite effect on me. I tend to feel a bit “stronger” emotionally and physically and generally be in a better mindset and certainly not sad. And after a few beers, my physical exertion tolerance actually increases a little. That’s probably a mental thing.

    I might change my pulmonologist because my current doctor has come off as rather insensitive and flippant. He told staff that I was “end stage” with me standing right there and within my hearing range. While the condition is very serious, I don’t think he has a right to pass judgment on when my number might be called. As I’ve researched, the term “end stage” is quite relative and I don’t plan to just freaking roll over.

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