Well, here we are again, after two months the wheel has turned full circle, and I’m scrabbling for effective heart medication again. But Nebivolol, after all I said about it? Yep, and I’ve explained my reasoning below.
Yesterday, I was so weak I could barely speak, and bordering on tachycardia. Tachycardia is, officially, a heart rate of 100bpm or above – trust me, when you’re on the receiving end, the difference between 95bpm and 100 is entirely academic! A heartbeat as erratic as a punk band on speed didn’t help either.
So, today, I reintroduced Losartan, at 12.5mg. It’s not perfect, but it’s an improvement on, well, nothing.** Heart rate down to high 60s, so at least I don’t feel as if I’m vibrating. And I can speak normally again.
**I told my GP that taking Adizem XL (24-hour sustained-release Diltiazem), twice a day both reduced tachycardia to normal, and brought my BP down to a sane level. So he prescribed Adizem SR, exactly the same dose, but only active for 12 hours. I simply don’t get the response with SR that I got with XL, which is doubtless linked to the higher serum levels of Diltiazem from the latter – Jesus, it’s not rocket science!
So anyway, I’m essentially, except for the addition of Diltiazem, back where I was in July. Thing is, if I ignore the erratic heartbeat – which has been with me now since the mid 80s, so is unlikely to suddenly kill me** – I don’t feel too bad today. I’ll continue with this combo then (Diltiazem and Losartan), which has no known adverse interactions, and see how it goes. (Not going to happen – see Nebivolol, below).
If all else fails, I still have Digoxin to fall back on. It has no major interactions with anything I’m taking, and the few moderate interaction seem to come under the heading of “this might happen but if it does we don’t know why, or even if it’s real”.
This is the type of reaction that tends to be reported by relatively few people during trials, with no cause found but, because it was reported, it goes on the list. This is why I caution people not to take Patient Information Leaflets at face value – they don’t always tell the full story and can be needlessly worrying (I do most of my drugs research here http://www.drugs.com/ ). And, of course, just because a side-effect is listed, it doesn’t mean it will happen to you.
If I get a new drug, I check for adverse interactions, but ignore side-effects unless something goes wrong. The listing of drug side-effects on PILs can. for many people, become something of a self-fulfilling prophecy once the idea is planted. I’m not saying patients should be kept in the dark, I’m saying that patients need to raise their knowledge level, and not blindly expect GPs to know everything about, well, everything – it’s simply not feasible.
There’s something else I need to reconsider, too – the beta-blocker, Nebivolol, because the effects of this morning’s Losartan are already history, and at 83bpm my heart rate is heading for the stratosphere again.
It’s fair to say that for a little while, taking Nebivolol, I felt very well indeed – until it all when to hell.
As I’ve said, previously, the consultant went straight for the maximum dose, 5mg, when I should have started with the lowest possible dose, 1.25mg.
I have a feeling that maxing out the dose immediately, instead of working up to it slowly, might well have made me oversensitive to this drug. It makes sense to me anyway – hit someone with a dose that triggers adverse reactions and lowering the dose might not affect them (I’m whistling in the dark here – I’m well-informed, but obviously I have my limits – yes folks, you heard that first here!).
So, having given the matter a lot of thought, I intend to re-introduce Nebivolol at 1.25mg and just suck it and see, starting tomorrow.
Looking back at my notes, aside from the side effects, I got the best results with Nebivolol at 1.25mg every 12 hours, but by that time I’d decided it was history and just wanted it gone. I will, though, as I have Diltiazem too, now, just go with one dose a day for now, unless, as before, I develop tachycardia by early evening.
I think it’s fair to say that I could use a little support here, but there is zero point in my asking for another cardiology referral, because I’m on the Arrowe Park shit list for daring to complain about, and publish blog posts detailing, my absolutely abysmal treatment.
A referral to another hospital is out, too. It’s hard enough getting to APH, the chances of my being able to get to the Royal in Liverpool are between slim and none – it might as well be on the moon as I can’t use public transport, or afford taxis.
That’s because the return taxi fare is around £35, doable occasionally but not, as almost happened at APH before they decided I wasn’t going to get any tests at all, several times a week.
So it’s DIY time – again – and from tomorrow, it’s back to Nebivolol. I have enough tablets left, once they’re cut up, to give it a fair trial (just about a month’s worth, once a day), and we’ll see how that works out.
There are a couple of problems, though. Despite the starting dose in heart failure being 1.25mg, the only tablet size is 5mg, which is scored to give 2.5mg (ish). So the tiny, oval tablets have to be quartered, which makes it impossible to get an accurate 1.25mg dose. WTF is that about?
The other problem is Diltiazem. Both it and Nebivolol will reduce my blood pressure, and the consultant told my GP not to prescribe both as it might drop my BP too far. I don’t want to lose Diltiazem, as it has a beneficial effect on my breathing, and at the level I intend to take Nebivolol, I don’t believe the risk is significant, or even there, anyway (after all, the consultant prescribed 4 times the dose!). So I’ll suck it and see, and monitor my BP several times a day.
What I am NOT going to do is monitor the Nebivolol with my pulse oximeter more than a couple of times a day, if at all. I think that’s where I went wrong last time, obsessing about the minutiae and, just maybe, missing the big picture.