Heart failure

Other side effects of heart failure medication

In addition to common side effects (see ‘Common side effects of heart failure medication’) the people we spoke to attributed several other problems to their heart failure medicines. These included erectile dysfunction (impotence), breast enlargement in men, damage to the liver and thyroid gland and sensitivity to the sun.

Some men noticed they had lost interest in sex (loss of libido) since having heart failure and several could not maintain an erection ; most did not know whether to blame heart failure or medication, though one man was convinced that atenolol had affected his sexual ability. Reduced libido and impotence are known side effects of several types of medicine (beta blockers in particular are well known for causing problems with erections) although they can also be caused by cardiovascular disease and other medical conditions. Older men had accepted their impotence and ceased sexual activity. A 74-year-old man said he was aware that impotence was a potential side effect of his medicines but he hadn’t put it to the test. Although the drug Viagra (sildenafil) is widely prescribed to help with erectile dysfunction, it is not recommended for people with heart conditions because it raises blood pressure.

He chose not to take an alternative medicine that would preserve his libido but be less effective for his heart condition.

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Age at interview: 65

Sex: Male

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Some time back I complained to my GP that my libido had suffered quite dramatically. But, looking back it wasn’t sudden, it had crept up on me, and I suddenly found that I had no interest at all. And my GP - fortunately - looked through all the medical books regarding the medication I was on and wrote me a very nice letter and called me into the surgery to explain the problem that yes, she could possibly put me on different medications for the heart condition that I have, which may improve my libido, ‘But they would not be so efficient in dealing with your heart condition’. So the choice, if you like, was mine, as to whether I wanted one or the other. As far as I was concerned my heart condition was far more serious. One can live with less libido if one likes to put it that way. If you have a loving relationship at home it doesn’t make a bit of difference. If you can have a cuddle at night, great, you have a kiss at night, great, that’s part and parcel of family life.

Brian feels that age and beta blockers caused his impotence. His GP prescribed Viagra but didn’t help.

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Age at interview: 76

Sex: Male

Age at diagnosis: 70

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One of the other side effects of probably beta blockers which I take, great limitation on one’s married life. It, impotence is a possible side effect with some of these things. I understand from talking to the doctor and from reading the literature that that is a problem that affects some people but not all people and sadly it has affected me. Now I’m also in my late seventies, so maybe an ageing factor alongside the effect of the medication.

If I were younger, I’d be very, I’d be very unhappy because I’m so limited in what I can do and if I were younger and I couldn’t do jobs around the house and I couldn’t do jobs in the garden and I couldn’t carry the luggage and things like that, I’d be pretty depressed but at, but to be honest that side of it doesn’t really bother me now, I just accept it’s my condition. I’m disappointed that the side effects of medication have affected the physical side of, of a marriage. I’m, I mentioned earlier on that with, with beta blockers it is, I think a much higher risk of impotence than the medical profession allow for. They say it’s a possible side effect. Well it might be possible if you’re thirty of forty but if you’re my age it’s a, it’s a no, no. Once and I know perfectly well that it was when I started taking them, I immediately became impotent so it’s not , it’s not guess work, I mean even though they say it’s a fairly rare problem, it just happened. So I’m pretty disappointed with that.

Have you discussed that with your wife?

Yeah, yes she, she accepts it. She sometimes gets a bit upset but on, because she’s younger than me you see. And we weren’t married more than a few years before this happened. I’ve discussed it with Dr [name] and he very kindly prescribed some medication, I tried Viagra, no it doesn’t have any effect at all. So I think that that would be one of my main problems with the health condition.

Impotence was more of an issue for the younger men we spoke to, who were more likely to want to try to find ways to overcome it.

Atenolol seemed to affect his sexual ability but his libido returned to normal after stopping the drug.

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Age at interview: 35

Sex: Male

Age at diagnosis: 35

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Actually the, the... atenolol affected my sexual ability tremendously for about, I stayed on it for about 7, 8 years. It was fine in the first 5 or 6 years till after 1999 I started feeling a difference in my ability, but once I stopped it everything was, came back to normal. Actually I'm quite fine now! My wife doesn't complain! [laughs].

Which is good. But I felt, I felt the difference and actually I took some sort of treatments for it for the sexual ability after I stopped the atenolol. So there were loads of medications involved in my case to help the bad impact of the other drugs that were dedicated for the heart to treat the liver and the, digestive system and the, as I said you know, to treat the sexual ability, yes.

Philip described all the possible methods he had tried of overcoming erectile dysfunction but nothing proved satisfactory.

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Age at interview: 52

Sex: Male

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How have you dealt with your erectile dysfunction?

I saw a urologist who prescribed a very, very small pellet that you basically injected in in into the penis but that was very painful, very painful indeed. So we came away from that one. The other option was to have injections directly into the penis but, because I’m on so many blood thinners, I bleed. So you cannot have an injection. Viagra is a no go because Viagra is not good for your heart, even though it was originally been designed for the heart. So the only thing that they’ve come up with is a pump. The problem with the pump is that it causes bruising. Bruising is, obviously, internal bleeding, and you don’t want that. And you’re you’re restricted to the time with the pump to thirty minutes. So you then have to take this device off and then come back to it an hour later. It’s not very pleasant, not very pleasant at all. It takes all the fun out of it, it really does.

So there isn’t any satisfactory alternative?

There is nothing.

Despite being told the risks of Viagra, Tim had obtained some and used it successfully for a while but then his erections returned naturally.

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Age at interview: 53

Sex: Male

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Oh, one of the, the blood pressure pill, ha, oh yeah the blood pressure pill. This is quite funny is this one. The blood pressure pill I’m on affects you sexually. As soon as I started, well, not long after I started taking it, actually getting an erection was, well it was an achievement if you could. That does affect, or it can affect different people, I suppose, depending on the milligrams you’re on. And to get an erection I found hard. That’s a bit of a pun there [laughter]. No, to actually get an erection was, it was a nightmare. And we went to see the specialist, went to see the specialist, and he said, ‘How are you getting on with all your pills?’ And I explained that to get an erection with the blood pressure pills, is there anything else I can take, as in Viagra, just to help me out, because I was still only 44 at the time. And he said, well he just looked through a medical journal and said. ‘You can’t have those because those raise the blood pressure and we’re trying to reduce your blood pressure’. But on saying that, I did manage to get hold of some Viagra, sod the consequences, yeah and I found them quite good [laughter].

And are you still using that?

I haven’t used that for a couple of years now. I think, I think mainly it was, oh let’s say, after your body starts to get used to, after your body starts to get used to being on the blood pressure pills, probably after three or four years, the erections started to come back. You know, my blood pressure hasn’t risen, but the actual erection has started to come back, and I would only use, let’s say, the Viagra recreationally [laughs], I think that’s the polite way of putting it. But yeah, you can have fun with that.

Two men had experienced breast enlargement and soreness which had shocked them; one didn't know what the cause was, and the other said the condition improved when he stopped taking spironolactone (a type of diuretic).

He has experienced breast enlargement as a side-effect of his drugs.

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Age at interview: 56

Sex: Male

Age at diagnosis: 53

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But the one side effect that is mentioned in all these things that I have to take is it enlarges men's breasts! Bloody massive up here! It couldn't do something great or make me more virile or something like that, no it has to give me breasts! My wife who has got no breasts would love to take it but it doesn't work in women so they must get some other kind of medicine.

I thought 'Christ alive! The last thing I want is a pair of tits'! God love a duck!

He developed a swollen and sore right breast from spironolactone.

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Age at interview: 49

Sex: Male

Age at diagnosis: 46

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No, I'm pretty sure I can rattle them off. My daily drug list... I take aspirin 175mg, no sorry 150mg of aspirin a day, atenolol 50mg, spironolactone 25mg.

Oh there's a funny one spironolactone, it has a very obscure side effect to the point that I actually went to my doctor with what I thought was a totally independent ailment to my condition. I developed a very sore right breast, very sore, and I went to the doctor because I just couldn't believe how painful it was or why it was so painful and why it was swollen, but one of the side-effects of spironolactone is that it causes breast enlargement. Unfortunately it's not bilateral not uniform, just the one so that's quite embarrassing and it's incredibly painful. Having said that it did stop and then started on the left-hand side and that became very sore, so they cut my spironolactone from 50mg down to 25mg and touch wood it's seemed to have eased off, but that's certainly a side effect and quite a painful one to boot.

So aspirin, spironolactone, atenolol, nicorandil 60mg a day, isosorbide mononitrate... 120mg a day, frusemide 160mg a day... there is another one and I'm struggling to think what it is... no its my cholesterol tablet which I take of an evening, the name slips my memory, like I say it's a terrible memory! I think that's most of them, I don't think I've forgotten the others, I possibly have, but I can always get my list out and tell you.

Several people experienced extreme reactions to particular drugs, for example one man found he couldn't tolerate simvastatin (Zocor) which gave him hepatitis (an inflamed liver) and made him ill for 2 years.

He was unable to tolerate simvastatin (Zocor).

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Age at interview: 35

Sex: Male

Age at diagnosis: 35

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And then they put, they increased my medications, they had a few more medications, they increased my medications one of them was the Zocor [simvastatin] for the, for the lipids, for the cholesterol. After six months of taking the Zocor it knocked me out completely! One of the side effects of the Zocor is liver problem, and I had a liver [pause] it's kind of a hepatitis, they called it 'drug-induced hepatitis', and at some stage I just couldn't get of bed in the mornings because of that.

And no one told me that I had to check my liver while I was taking the Zocor. So stopped the Zocor [laughs] and then found out the atenolol was causing some other problems with the, with my... digestive system, and went on other medications and was seen by another consultant to do with the digestive system.

I had colonoscopy and endoscopies and CT scans and MRIs of the digestive system, just to get it working. And the liver, I had liver biopsies and had medications to treat the liver, so you know everything was confused. I suffered for about two years after that. Now everything is fine, everything is stable, I'm on a few medications for the heart purely.

Others had adverse reactions to amiodarone, a medicine for heart rhythm problems, including sensitivity to the sun, and though one person had been warned to avoid the sun by his doctor he had taken no notice and got burned. Since then he had taken to wearing gloves and a straw hat whenever he goes outside. Some men developed a thyroid condition as a result of taking amiodarone, so now took thyroxine in addition to their other medicines.

He experienced bad sunburn because of one of his drugs.

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Age at interview: 81

Sex: Male

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I want to do lots of things but I just can't do them. I'd like to get back to my carpentry again but I can't... I like' I suppose the best thing I like now is driving. I do like to drive. But another thing about these pills I take, I mustn't get in the sun. The very first time he said, 'Don't sit in the sun', he said, 'because you'll blister'. I thought to myself, 'what a load of rubbish'! So out I went in the sun. I wasn't out there five minutes when I thought, 'my face doesn't half feel hot' and it came up like a beetroot! I've tried it a couple of times since and I just cannot stay in the sun, even when I'm driving and the sun comes in on my hands, I've got a pair of gloves. Even in the hottest day, when the sun's shining like mad, and I've got two big straw hats out there, I have to wear when I go out (to keep the sun off me face, which is very awkward in the summer) but I look like a tea-planter going along. But' I've got to do it. Sometimes when I go out and the sun comes out when I'm not expecting it, you try to keep, I even put my collar up sometimes to keep it off my neck and that but it's no good, it catches me sometimes, and I do come right up and I feel as if I'm going to blister. It's that bad, it does get bad.

He was unable to tolerate simvastatin (Zocor).

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Age at interview: 35

Sex: Male

Age at diagnosis: 35

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Other bodily changes blamed on medicine side effects included aching legs, skin conditions, sleeping difficulties, fatigue, glaucoma and cataracts, memory loss and poor concentration. Norman had a psychotic experience when taking an experimental drug as part of a clinical trial, so had to stop it.

Since taking medicines for his heart condition Roger has experienced pains in his legs in bed at night.

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Age at interview: 68

Sex: Male

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Probably the statins, it’s you get a lot of muscle pain. Yeah, I get pains in the neck, which I never used to get before, like cramp. For two or three hours at night in bed, I get pains in my knees, legs. This one, this one. That didn’t happen until I was on the medicine and my heart went funny. But, yeah, now I mean it doesn’t, it’s not that bad. It’s like having cramp, but without the muscle contractions, you get the same sort of pain. But it goes off quite quick. If you get, get out of bed, walk round the bed, back into bed, it’s gone. But, it will come on just as quick. You are laid there one minute you’re fine and next minute, argh, you know you have to get up quick and exercise it. But that will go on till probably, I mean, I don’t go to bed till, I don't know, most nights, half past eleven, twelve o'clock, and by three o'clock in the morning, it’s back to normal. It’s all right. I am asleep.

Norman talks about a bad experience he had when taking an experimental medicine.

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Age at interview: 73

Sex: Male

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Norman: I have had a psychotic experiences and …

Elaine: Yeah

Norman: Because I've done quite a few trials on drugs, so many I couldn’t even remember them. And yeah I've had some bad experiences that I wouldn’t like to go through again. The one particular one I was, should I tell them, I don’t know. I was given this tablet by the doctor.

Elaine: By the doctor actually

Norman: And should I say it why it's a killer?

Elaine: Well

Norman: Honestly, and I was stood at that window crying my eyes out, and it's the first time I've ever left here and I walked straight in the surgery, didn’t see…just walked straight in. Somebody was in talking to the doctor; I thought he'd finished me and then… but that’s probably the worst experience I'd had and that was with a trial drug.

Elaine: He apologised didn’t he, and he said, "I'm sorry that we hadn’t tested it."

Norman: It was a trial drug.

Elaine: It was a trial drug. We didn’t have that it affects anyone, but now we know while they’ve affected you, you know…well he took the box off him and threw them away.

Occasionally people became aware of interactions between two or more medicines. For instance one woman said that the action of her warfarin had been blocked by a herbal sleeping pill and by antibiotics. She says she always consults a pharmacist when starting new medicines. Richard found that the medicines he was taking for a prostate problem were interfering with his heart medicines, so he stopped it. Ted believed that drinking alcohol had interacted with one of his heart medicines, so he gave up alcohol. A man said that he was starting on a beta blocker very slowly as it was recognised that it could affect his asthma.

Several people saw no point in worrying about possible side effects because the drugs were necessary to counteract their heart failure, Not everyone said they had experienced side effects from their heart failure medicines. Some people said they found reading the list of side effects in the leaflet accompanying each medicine scary or off-putting. Others said they don’t read this information for precisely this reason or because it might make them imagine they were having all the side effects listed. One woman said she re-read her medicine leaflets repeatedly as a reminder of the side effects so that she would recognise them as such if they occurred.

She doesn't want to know anymore about side effects in case she imagines having them.

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Age at interview: 53

Sex: Female

Age at diagnosis: 49

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The only side effects I had, was when I first started taking the beta-blockers, and I was really ill, sick and dizzy and breathless again. But no, I'm... I suppose I should read the packets and it says, 'You may get this side effect' but I don't! I don't want to read what side effects I'm going to get, because who knows, in my head I might start getting them, and I don't want to do that. I know I trust my doctor, my consultant who put me on these tablets and I know that they're good for me, and if I didn't take them then I wouldn't be here probably.

Because drugs affect people differently it is important to talk to a doctor about any side effects as it is often possible to change medication.

See our resources page for publications which explain heart failure medications in more detail.

Summary added in April 2016.