Living with multiple health problems
Side effects of medicines
The people we spoke to reported different experiences of side effects from medicines which they had been prescribed by medical professionals. Sometimes, the number of different symptoms, conditions or changes to a person’s medication list meant that they could not always work out whether they were experiencing a side effect of a prescribed drug or not (see ‘Interactions between different symptoms, conditions and medicines’). As with people’s feelings and opinions about medicines (see ‘Different views on medicines’), those we interviewed expressed a range of opinions and views on side effects. Some people were frightened of the prospect of side effects with a new medicine, even if they had not experienced any in the past. People often avoided reading the information leaflets that come with prescription and over-the-counter medicines for this reason. Others found that they experienced side effects with a medicine when they first started using it, but then things ‘calmed down,’ perhaps after the dose was altered or reduced or their body had adjusted to the medicine. At one extreme, people said they had experienced no or very few side effects; at the other people suffered side effects that were so bad they wondered whether it would be better to live with the symptoms of their condition/s rather than the side effects of the treatment. They made a trade-off decision between symptom control and quality of life in light of side effects.
Allergies to medicines
As well as the complications brought by multiple health problems, several people were allergic to a particular medicine or could not tolerate medicines containing certain substances. For example, Leonard was allergic to penicillin and John did not tolerate medicines containing opioids. David was allergic to aspirin and it had taken a while to find an alternative treatment. The first alternative he had tried had made him feel “faint and very light headed”. This was similar to Jeffery’s account of a medicine where he stated that he “sometimes feels a little giddiness.” Because John didn’t tolerate opioids, he had to rely on aspirin based painkillers and took another medicine to counteract stomach problems that can happen after using aspirin.
John does not tolerate opioids, including codeine. He has to be careful he doesn’t use too many products containing aspirin for pain relief.
John does not tolerate opioids, including codeine. He has to be careful he doesn’t use too many products containing aspirin for pain relief.
Right.
…from, you know, sort of Codeine onwards, every single side effect that there is I get, so I can’t take those. So painkillers are not much… are no more use than anti-inflammatories as far as I’m concerned. But I can’t keep taking aspirins, and not allowed to take the ibuprofen and derivatives because they’re aspirin derived originally and cause the problems.
Anne X said that she was “terrified” about side effects and found it hard to take new medicines as she is “on such a bucketful” already (see also, ‘Dealing with multiple medicines’). Andrew’s consultant thought that a prescription medicine he was taking might have caused him to feel faint rather than a problem with his heart as Andrew had suspected. Farza found that medications taken for anxiety and other mental health problems led to weight gain. Chris found that blood pressure medicines made him feel the cold more in the winter. Pat’s blood pressure ended up too low as a result of her prescription and she reported passing out until the treatment was changed. Sue was taking a drug which meant she had to avoid sunlight. Jean needed to take anticoagulants to lower her risk of developing blood clots but couldn’t because of the risk of bleeding into her brain. Anne X reported that when the dose of one of her medicines was increased it caused her a dry mouth. Both Steve and Eric found that they suffered constipation as a result of taking prescribed medicines, but this was seen as a small price to pay for symptom relief.
Farza’s medicines help to relieve symptoms but they also lead to weight gain.
Farza’s medicines help to relieve symptoms but they also lead to weight gain.
Right...
...that you take.
...well, the side effects, I put on weight, I put on a lot of weight with the medication. I take mirtazapine, clozapine. Benzine, is it, benzine... I don't know.
And do the, do the drugs help, help your symptoms at all, or is it just all...
Well, the...
...bad effects?
…no, they have a knock on effect. The, they do help my symptoms just to, to some level. But they put, they have...they don't help me in the respect that, they put on weight, I put on a lot of weight.
Medicines had caused some people problems. Gogs had steroid injections which she said left her “looking like a burns victim.” Robert had taken a lot of steroids in the past and was diagnosed with osteoporosis following a densitometry test. He had also had internal bleeding from using warfarin. Steve believed that his arthritis had been caused (or magnified) by steroids and he was having to take some medicines to counteract the potentially harmful effects of other ones (see also ‘Risks and potential harms for patients’). Graham, a tutor on the NHS Expert patient programme, had resolutely refused to take steroids when he was diagnosed with rheumatoid arthritis more than 20 years ago (note alternative treatments are now available). He had also refused to take a widely used anti-inflammatory medicine. Fred was taking a tablet that came with a warning not to touch it as it caused blisters. Although he worried about swallowing a tablet that came with such a warning, it was effective in getting rid of debilitating dizziness, nausea and vomiting. He attributed the loss of a tooth to taking this medicine.
When Graham was diagnosed with rheumatoid arthritis he refused steroids and some other medicines. His doctor has doubts about the accuracy of the diagnosis.
When Graham was diagnosed with rheumatoid arthritis he refused steroids and some other medicines. His doctor has doubts about the accuracy of the diagnosis.
And you were saying that your doctor thinks that you’ve got osteoarthritis rather than rheumatoid, do you want to talk me around that one?
Yeah. It…it’s because I don’t take medication, and I haven’t gone back to the doctors to you know, about my rheumatoid arthritis. I try and manage it myself. And you know, when I have gone back to them, you know, I do a lot of research on what drugs they offer me, and I decided that, you know, I could take this one drug. Recently they offered me diclofenac, I can’t pronounce these words, but another drug that they’ve linked to heart disease.Robert’s GP sent him for a bone test because he’s had a lot of steroids over the years. He was found to have osteoporosis and has symptoms in his hips and legs.
Robert’s GP sent him for a bone test because he’s had a lot of steroids over the years. He was found to have osteoporosis and has symptoms in his hips and legs.
Right.
He said, “And there’s some new publications out on steroids and.” He said, “If you’ve had a certain amount, you really need a densitometry test.”
Right.
So I went for a densitometry test and the result was that I’ve got osteoporosis it seems and it had attacked my hip, that’s the right hip and the right shoulder. So here I am with osteoporosis and I’m being treatment for the same. I am treated, of course, for the COPD. They took me into hospital and got rid of the, well, your body gets rid of the blood clots I know but they did, they, treatment wise, you know, obviously, organised it, they treated me with fragmin in there for the first time.
Right.
The clot buster, and I came out cured from the pulmonary embolism. I have, in actual fact, got all sorts wrong with me through the osteoporosis. I have a lot of problems with my hips and my legs going downwards and my right leg is giving me some trouble now, although it’s the left leg that’s got a DVT and my right leg has is going. Fred’s treatment for Meniere’s disease comes with a warning not to touch the tablet as it might cause blisters. The side effects are worth putting up with because the tablet is effective.
Fred’s treatment for Meniere’s disease comes with a warning not to touch the tablet as it might cause blisters. The side effects are worth putting up with because the tablet is effective.
No, that is the major thing that struck me, when I was laying there, thinking is part of this problem diabetes related? I can’t… I couldn’t figure that out. I mentioned it to the doctor, but he said… he just passed it off, and I’m still not sure. I’d like clarification though to see if the diabetes is related, but I don’t think it is.
How many drugs, do you take, on a daily basis?
My wife will tell you that, she… six, eight, ten… and this one makes it eleven. Eleven different drugs. I’m not sure, I’m not sure how this will impinge on it, because it says, don’t touch the tablet, it’ll make your fingers blister. I think, if it makes my fingers blister, what’s it going to do to my inside?
Is this the one that’s…that’s done something to your tooth?
The ones I was doing, yeah, dropped out [laughs].
I had to put them on the gum, and let them dissolve on my gum.
And what are those tablets for?
This is for this, Meniere’s disease, syndrome.
Okay.
Yeah.
And are they effective?
It seems to take it away, yeah, it takes the dizziness away. As such, I’d say that if my teeth drop out, it’s better than having this se…feeling of wanting to vomit all the time, and this dizziness. The dizziness is terrible. It’s just…the room spinning, and you can’t focus. Instead of a still picture, it’s like a cinematograph, the old cinematograph, going round, and the pictures are just skipping in front of you, and, er, you can’t control anything, and then you want to be sick. It’s…like violent sea sickness.Gogs’ initial treatment made her ill and was stopped. The same thing happened with another medicine. She was then put on steroids and other medicines which affected her digestive system leading to weight loss.
Gogs’ initial treatment made her ill and was stopped. The same thing happened with another medicine. She was then put on steroids and other medicines which affected her digestive system leading to weight loss.
So, initially, I got started on some medication which was started by this… this chap that I know but it didn’t suit me, I kept on it for about three months, but I was really quite ill with it. And so it was stopped when I went to the NHS hospital, because, simply I said, you know, I was... I’m having horrendous side effects. And it wasn’t very long after that that I was diagnosed with the rheumatoid lung and, of course, that created more problems then, because the drugs I have for the rheumatoid, I can’t have, because they conflict with the lung problem. So it has put me into the complex category from day one, which I absolutely hate.
So is your treatment sorted out, such that you don’t have side effects now?
There…there was, yeah, I went through a few processes there, I had another drug which was equally unpleasant and that had to be stopped and then I spent possibly a year, just being covered by steroids. So, you know, you can go back to the days when you…you knew about it. And the steroids caused havoc, but the other drugs also caused havoc with my digestive system and I lost a tremendous amount of weight, in fact, I haven’t put any weight on, I’ve only lost weight since I was on steroids and lots of weight, you know, I was, oh, sixty-six kilos when I started, and I’m about fifty, fifty-one now, kilos. It’s fairly stable at the moment, but what I’m on is not affecting me either now.
And what were the unpleasant experiences that you had on the drugs as well as the weight loss?
Vomiting and diarrhoea.
Side effects of treatment were regularly discussed by people with epilepsy, especially where their seizures were poorly controlled by medicines (see also ‘Different views on prescribed medicines’). Loraine had taken anti epilepsy drugs since aged 5 months old. As a result she had developed bone problems and blood disorders and was having to take folic acid and vitamin D. It took Tony 2 years to get his medicines sorted out when he was diagnosed with epilepsy in his late 30s. At first, the side effects were “horrendous” but now he says that the side effects are “nothing drastic”. Anne Y had experienced an extreme reaction to an epilepsy drug that led to a hospital admission. She has been told that aggression can be a side effect of her drugs and she reported bad memory, irritability and being bad tempered around the time of her interview. Tammy believed that anti-epileptic drugs are sedatives and was upset when her GP wanted her to take yet another medicine that would make her feel drowsy. Lottie, with poorly controlled seizures, wondered why she bothered dealing with the side effects of her medicines when they weren’t seen to work in any case. She wondered whether it would be easier to deal with seizures, rather than the side effects of the drugs. Amy did not have epilepsy but she reported having to take her pain medicines at night as they knock her out if she takes them during the day.
Anne Y is not sure whether her symptoms are caused by her conditions or are side effects of drugs. Medications could have caused problems with her blood, although she is awaiting specialist referral to find out.
Anne Y is not sure whether her symptoms are caused by her conditions or are side effects of drugs. Medications could have caused problems with her blood, although she is awaiting specialist referral to find out.
Right.
And insecure in as much as I have to be, know everything that’s happening in my in my sort of situation so.
Right.
And if somebody says something to me then, as far as I’m concerned, it’s cast in stone. So.
Right.
Whereas before, you’d, you know, sort of be easy come easy go, now I have to know, you know I can probably say something three or four times to make sure that it’s right in my mind before I can go ahead with various things but.
Right. Right.
I think that’s possibly an effect of that because I didn’t used to be quite so precise but, as I say, I have to know specifically whatever is happening with regards to whatever.
Is that something you feel that has developed as a result of taking all these medications or?
I don’t know if it’s taking the medications or because of the condition. I’m not quite sure which it is. I think I think more the condition than, I think the irritability is possibly through one of the medications.
Right.
Because he did and, when I said to him I felt I was really aggressive, he did say, “Well, that can be a side effect from the medication.” So that that’s probably all really that I could say and, obviously, of course, the blood problems again because I wasn’t on iron tablets. I’ve had to go back onto those because of big problems that are now occurring with my blood again so.
Right. I see. Okay, and is that as a result of the medication you are taking or is that?
Yes, I think so.
Right.
My consultant did say he felt that maybe it was to do with that, which is why I’m having various tests now with the blood again so.
Right.
That could, you know, once they’ve decided definitely it could turn out to be because of that but, having said that, I’ve had to go now to see a haematologist.
Right.
Because something is wrong with the platelets again, which is what happened when I was really ill but, when I said to him did he think it was because of the medication, he didn’t think so.It took 2 years to control Tony’s epilepsy with medicines and at first the side effects were “horrendous.” He wonders whether recent memory problems are a result of ageing or a side effect of treatment.
It took 2 years to control Tony’s epilepsy with medicines and at first the side effects were “horrendous.” He wonders whether recent memory problems are a result of ageing or a side effect of treatment.
Yeah, it is. It’s very good now and it’s totally under control, you know, no issues at all. As I say, it took a good two years to control the seizures until they stopped.
Right.
And, not only that, the medication was horrendous, I think the way it was, it was initially sort of put on a very high dose and gradually reduced it. And I was like a zombie sometimes.
Right and is that, I mean is that something that you raised and that was responded to or was it?
Yeah, yeah, and I think it was I think it was just trial and error and I think it was just trying different drugs, trying different combination of drugs, trying different dosages. I think, I don’t know if it was the combination but just trying to see what worked best for me and, you know, I think, I don’t really have a problem, you know, it’s just with that. It’s just very difficult to get the balance.
I think you mentioned there that you still have some side effects from your epilepsy medication or?
Yeah, I think one of the things is, I’m I think it is affects my thinking, to a certain extent, but I think it’s just memory is probably the worst one. I think it I don’t think I think as fast. I mean it’s partly, it’s hard to tell because I’m older and it’s just a natural progression. I don’t know if I told you this on the form but I’m almost fifty, but I suppose as you get older your memory does slow down a bit anyway but I’m sure I’m sure, because it was so dramatic when I first started on the drugs that I noticed it, that that it affected me. Whether that’s psychological or not, I personally think it’s affected me. It’s definitely affected my memory. I can’t remember things as I think I should do. I’m just completely wiped.
Right.
My wife will tell me things and just, and I just don’t remember them at all. And I don’t mean forgetfulness like, I can’t remember where I put the car keys. It’s just things that that I’ve done, that I just don’t have any recollection of.
Right.
So.
And is that something that you’ve shared with your GP or consultant or?
Yeah and, you know, and it’s just a case of, “Yeah, but the drugs are working effectively.” There’s not the seizures. And a couple of times, we’ve sort of revisited the drugs to see if anything that would be better. Not at the moment.
Okay.
It’s just a case of it’s a compromise.Lottie feels that the new generation of doctors are better at listening to patients’ concerns about side effects. Having conducted her own research she feels better able to question her doctors about side effects.
Lottie feels that the new generation of doctors are better at listening to patients’ concerns about side effects. Having conducted her own research she feels better able to question her doctors about side effects.
No, I think quality of life is starting to slowly, especially in, this is going to make me sound like a right old fart, in the newer generation of doctors. I think they are appreciating that sometimes it’s better or that patients are allowed to have the choice.
And, when you go and you say, “You’ve put me on this new drug and I feel like absolutely rubbish.” They will listen and talk to you. Still some of the old school are like, “Well, just keep, you know, bashing on it. We need, you need to have been on it for at least x number of months before we can make a judgement.”
And that can be frustrating. But again, I think now that with the sort of research I’ve done, I will question why and will say, “I’m not, I’m not taking this because it’s not making me feel good.”
Because, at the end of the day, nobody knows what’s really the effects of these drugs for a lot of them, the long term effect, and I think people should be allowed the right to question why and what it is they’re taking.
Tales of previous side effects were also told by people with diabetes. As with epilepsy, diabetes was seen as challenging in terms of complicating, or leading to other conditions. Medicines taken for other conditions might also make diabetes worse (see ‘Interactions between different symptoms, conditions and medicines’) as happened in Tammy’s case. Ronald spoke about how diabetes medicines had “made me feel really ill.” Leonard reported a similar experience, although everything was fine after the initial dose was halved. Ann was pleased that the medicines used to treat her diabetes initially did not come with side effects. However, when she went on insulin she found that she put on a stone in weight within the first 6 months. Jeffrey, who had diabetes and heart disease, was unusual in saying that he was perfectly happy with his treatment regime and didn’t experience side effects.
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