Alport Syndrome

Side effects of medication and treatment for Alport Syndrome

People spoke about side effects from medication and from treatment for Alport Syndrome (e.g. dialysis) or operations that they had. It can sometimes be difficult to pin down exactly what medication or treatment is causing a side effect, particularly as the effects can differ over time. People described adjusting their medication to try to reduce the side effects (described by Paul as a “constant balancing act”). People said that they often had to take other medication to counteract side effects from their primary or original medication or treatment. Diane said that she took steroids and anti-rejection drugs after her transplant, and that everything else she took was “to counteract what the medication does”.

A range of side effects were associated with dialysis including tiredness and exhaustion, blood pressure increases and decreases, renal bone disease, insomnia, parathyroid issues and cramping. Dee said that not being able to drink much fluid on dialysis or eating much fibre, could cause constipation. People spoke about their bodies retaining fluid including getting ‘elephant feet’ which Steve said was very upsetting. Alan said that he felt light-headed when coming off dialysis, but this stabilised within ten or fifteen minutes. Dee and Karen both experienced arm and hand pain with carpal tunnel syndrome and issues with their calcium and phosphorous levels. Christine said that all the years that Paul had done dialysis in between transplants had taken its toll. Other people spoke about feeling better with dialysis saying that the side effects of renal failure were much worse than the side effects of dialysis.

Even though Steve said dialysis was necessary it felt like his body was running a marathon.

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Age at interview: 37

Sex: Male

Age at diagnosis: 3

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Dialysis itself you're on the machine for four hours; generally the whole segment takes about six hours to get done, so you turn up at the hospital. For other people they end up, you know they have needles in their arms and everything to, so the machines can do their job whereas I had a line in my chest with some tubes that they would plug into the machine. The whole time you're on it it's like your body's running a marathon while you're sitting still, so your blood pumps so much faster and you're metabolising at a far greater rate than normal. And for hours afterwards you could hear the sound of your blood racing behind your ears, and that makes sleep nearly impossible. Along with the, just the whole sensation, it's hard - , really hard to describe it. It felt - , it felt like I'd run a marathon, so my body was exhausted but my mind was really awake so yeah sleep became really difficult and so I -.

Yeah with dialysis they take fluid because you're not really going to the toilet as much as you should; some people don’t go at all. They take fluids, like excess fluid from your body, which can cause really severe cramping. Although for me that improved the cramps for a while because I had all these cramps before I had them because I had too much fluid in my body. So, once they kind of - , they get through and they get rid of it all. Eventually they can take a bit too much and that can cause the same problem. So, they try and kind of find a weight that they want you to be and take off enough fluid to keep you at that weight. But it -, my blood pressure increased so I had to have medication for that which caused various side-effects as well. Yeah so it's [sighs], it was difficult but it was necessary and it, it kept me going, but you could see, you could see that -. I'd do Monday, Wednesday and Friday, so every other day apart from Sunday I wouldn’t do, but the extra day between Saturday and Sunday and then having dialysis on Monday; Sunday you could feel the difference in not having had dialysis for that day. Yeah it would, it was pretty awful; your body kind of feels like it wants to shut down and I suppose that is what it was trying to do but-.

Karen describes some of the side effects she gets from dialysis.

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Age at interview: 42

Sex: Female

Age at diagnosis: 33

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It's a pain in the bum basically; it really is a pain. I basically lose three days out of my week because after dialysis I feel terrible. My blood pressure drops really badly while I'm on dialysis. So, I'll go in at say a hundred and fifty over eighty, and I'll come off at hundred over thirty, so it's a massive drop in my blood pressure. And for the first maybe three months I was continually dizzy all the time. But now the dizziness has reduced slightly but I still feel really rotten even though I sleep; I tend to not get a lot of sleep the night before obviously cos you're thinking about getting up early aren't you, because I'm on the first shift which starts at half past seven. So, I have to get up at ten past six to put my cream on, my anaesthetic cream on my arm, [coughs] and then the taxi fetches me at seven. So, you don’t get much sleep before. I do tend to have a couple of hours at dialysis if I can; I tend to sleep through it cos it's just so long [laughs].

Can you do that then?

Yeah

You can go to sleep?

I put my earplugs in now [laughs]. I wasn’t using earplugs but I do use earplugs now, and I'm going to take a sleep mask as well from now on, so I can get the fall asleep effect. Yeah you can sleep through it. So and there's TVs and things like that but it -, you get quite cold lying there for three and a half hours so, you know lots of blankets, heat pad, everything, and obviously you can't move your arm which is quite uncomfortable. I tend to get quite a stiff hand because of it you know; I keep having to move my hand but obviously when I fell asleep I don’t. So yeah and you're not allowed to kind of carry anything on that side cos it might affect the fistula, and because my fistula's grown so much I've now got carpal tunnel syndrome. So, it's now, because it's spread out it's actually trapped the nerves so I've been referred now for that as well. So, it's kind of, you get lots of side-effects from kidney failure that people don’t realise. They think, 'Oh it's just dialysis three times a week,' but in effect it's, there's lots of side-effects. You know like I've got renal bone disease so I get a lot of bone pain. You know I wouldn’t have got that if I hadn’t got kidney failure; you know there's lots and lots of things that I've -. A parathyroid issue which are, there's kind of four or five of them in your neck and they control your calcium levels. So, because the parathyroid's so high that creates more bone pains so you have to take extra calcium to try and control those, so you just end up on lots and lots of medication because of it as well. So, it's not just the fact that you’ve got to go to dialysis three times a week; you’ve actually got to manage the condition all the rest of the time as well.

Robin remembers vividly his first dialysis session and how much better he felt.

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Age at interview: 62

Sex: Male

Age at diagnosis: 26

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I can remember it vividly. It’s this is, what are we now, it’s probably thirty odd years ago. I can remember having the first session vividly and given that you had no, no effective liver or kidney function for some years or certainly some months having the first dialysis session, the first time actually having excess fluid taken off your body. So you’ve probably got pounds and pounds of excess fluid on your body and poisons in your blood and a significant amount of that coming out of that coming out of your system, not perfectly but even able to do that. I remember just saying, you know, “We’re going to have to, you know, we’ll get you a chair back to the ward.” I said, “I don’t want a chair back to the ward.” I felt like I was walking on air.

Ah

It was just as though somebody had taken a weight off of my legs. So that, that was an amazing effect. But yes and course you’re tired, but so many of the other side effects diminished.

People spoke about side effects from blood pressure medication including dizziness and light-headedness. Michelle said her son took his blood pressure medication before bed, but if he got up too quickly in the morning, he got dizzy. Debra also said she took her blood pressure medication before bed to try to reduce light headedness. Some people got a cough when taking blood pressure medication. Amanda said her son suffers from headaches and after doing some research on the internet and posting a message on a forum, she thought it might have been the brand of medication.

People who had had a kidney transplant spoke about a variety of side effects from the medication that they needed to take afterwards. Often these were side effects from the steroids and immunosuppressant medication. Side effects including increased sweating, poor concentration, feeling sick, acute diarrhoea, ear infections, weight gain and metallic taste in the mouth. Increased hairiness was reported by several people who took older generation steroids like Ciclosporin. For Alison though, she had hair loss from her head which really upset her.

Another side effect was the psychological and emotional effects of steroids and medication after a transplant. Richard X said he felt more moody with the steroids that he was on after his first transplant and like a “stroppy teenager”. Mariam said she had terrible hallucinations and Alison said she felt more emotional after her transplant. Other people said that they noticed a change in their behaviour. It was not always clear whether this was solely due to medication or a combination of this and going through a major life changing operation. Often having a transplant combined with taking medication triggered a lot of difficult emotions, sometimes prompting people to seek help and advice (see 'The emotional side of living with Alport Syndrome' and 'Alport Syndrome: getting information').

Richard Y describes his emotional state after having a transplant and how an incident at work prompted him to get CBT.

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Age at interview: 37

Sex: Male

Age at diagnosis: 23

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But in that first year, I went back to work. And I was on quite a high dose of steroids to start with. And I found that I was - well, I didn't realise it until people started mentioning it, that I was quite aggressive. Short with people. And generally not very nice. Which is something you don't realise, I guess.

So that was in that first year. So we're looking at 2013. It was early 2014, just before my donor got married. I was at work, and I'd spent a day on a project. And something went wrong. And they have these like blocks of post-it notes that companies give out. And I'd got one, because I was writing something on it, and I got that annoyed with what I'd lost a day's sort of work - that I threw this block of post-it notes unfortunately to one of my mild-mannered colleagues. Not at him, but in his general direction. And I threw it. And as soon as I had, as soon as it left my hand, I thought 'oh dear'. Not 'am I in trouble with anybody here?' Because I think they, they must have known, and noticed that I'd changed a little bit. So I apologised. Well, I walked straight out, I was so embarrassed. I sat on the toilet, cried. Because probably that was the realisation that maybe in the back of my mind I'd known things weren't right.

But that was the realisation that probably I'd turned into a little bit of a Jekyll and Hyde character here. So my colleague, I took him to one side, I apologised. He said, "Don't worry about it, it's no problem." I said, "No, I am worried about it, and it is a problem. It won't happen again." I went into clinic a few weeks later, mentioned it to my consultant. And there's not - not really any support network for once you've been transplanted. There is pre-transplant, there's dialysis social workers, and there's renal social workers, and loads of help. But I was just kind of - not discarded, but it's - I guess people think you've got other things to worry about, medically. And for me, that wasn't the problem, it was mentally. So I asked for help. And thankfully my transplant centre had psychologists, psychologist team. So I made an appointment. Well, they made an appointment for me to have an initial assessment. We sat down. And if I'm honest with you, I thought all this - you know - I'm just, 'I'm a guy who's 35 years old, pull yourself together', is what I would have told somebody else. And I got to that point where I sat with somebody in a room, and we talked about my fears, everything. And I just found out that I'd held a lot in, I'd not really told family and friends how ill I ever felt, how frightened I'd felt. My fears for the future. You know, if the transplant fails. My problem, I'd had like nearly a year of this on my mind. I just think - the analogy I gave, it's like a pressure cooker. And it'd just finally gone. And so we started an eight week programme of writing down what happened through the week, triggers. And I was asked at the first one, "Do you want a tablet to sort this out?" And I was like, "No." And the person who was helping me, she said "Fantastic. Because I don't want to give you a tablet, I want to find ways to help you cope. So, using cognitive behavioural therapy. And find ways of, for you to identify when things are gonna get too much for you. But also what you can do to diffuse those situations, and help relax as well." So we had about eight weeks working on this. And it's an open - not an invite, appointment - then to, if I ever feel that things aren't going well again, or I've got new fears, concerns, that we can revisit that. So I found that that helped massively. And yeah. It helped massively.

Mariam recalls horrible memories in the hospital after her transplant and having severe hallucinations.

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Mariam recalls horrible memories in the hospital after her transplant and having severe hallucinations.

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Age at interview: 21

Sex: Female

Age at diagnosis: 13

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But I remember I was - I started - I think from all the medication they were giving me, I started seeing weird illusions. Or I don't know what they were. I think hallucinating, I don't know.

Yeah, yeah.

And I was freaking out a lot. Like sometimes I would find like a clown in the building, and I was like "What's this clown doing here?" But no one else could see it. And then I think all the nurses were throwing a party, and I was like "What's going on? Like why are they throwing a party?" But I think that was really in my head. Like, yeah. I can't - I never - I was telling the nurses that I can hear children crying outside. And they would tell me that there's nothing there, there's no sound. Yeah. I remember I was always thirsty, and wanting water. But they, they told me I can't really have too much, so.

What were the doctors and nurses like, at the hospital?

They were nice. But I can't really remember much. Like I remember they would like come to my room, and do what they have to do, and then leave. I felt like they were just leaving really quickly, just -. But I guess they were just doing their job, but. I don't know. They were nice, but. From when I was hallucinating, they were like evil, for some reason, to me. Like I remember they were all like - that bit, when I was saying they were celebrating, they had a party, which I thought was a bit cruel. And then I remember this - I think it was a doctor and a nurse, started telling me all these horrible stories, about murders and people dying. But I think that's just in my head, but I don't know. Really did freak me out.

Yeah, yeah. Of course.

Yeah. I just remember like just freaking out, and just crying and screaming when they had to put needles on me, or do anything. Because, I don't know. I don't actually remember any good memories, they're just horrible. I just remember me feeling ill, throwing up all the time, just crying. I remember my , my aunt and my sisters came to visit. Well that was a good time. Until my aunt decided to watch this really sad movie. And I felt so depressed afterwards, I was like - "Why would you watch that, there?" But-. My Mum was actually pregnant when I was having the kidney. But I think she already had the baby, it was actually a little brother I had, yeah. I remember he was visiting me in the hospital. And I remember he was so happy with everyone else. But when he saw me, he just had a blank expression, because he didn't know who I was.

I felt quite heartbroken [getting emotional].

Philip, Mary, and Karen think that Anthony’s way of thinking changed after he had a transplant and was on medication.

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Mary: At first he took cyclosporine.

Karen: Cyclosporine, wasn't it.

Mary: But then he changed, they changed his prescription onto a different kind. I don't know what he took then.

Karen: They named it, didn't they. The inquest. It was - it was trialling.

Philip: I don't know whether - I don't know whether it did many any difference. But he seemed, after he started taking that medication, he did seem to change.

Karen: That's when things started to change.

Mary: I don't know if it were that, but.

Philip: I don't know whether it were or not.

Karen: I do, I think it was that.

Mary: Well, what he said - because the doctor had told him what it was, with the cyclosporine he were getting really - it makes you really hairy. And he was hairy anyway. But he said this will just have different effects on you.

Karen: Why do you mean, airy?

Mary: Really growing loads of hair, all –

Karen: Oh, hairy - I thought you said airy.

Mary: No, sorry. Hair.

So it's a steroid, was it?

Mary: Yeah.

Yeah.

Mary: There'd be steroid in it, wouldn't there. But I don't think it were that, I think it were just his self, and how he felt.

Karen: I think it - he went on this other drug, and I think that did have an impact on how he was. And he did change after it. Not straight away, but he did.

Philip: He did seem - he did seem to have a different way of thinking.

Mary: Mmm.

Philip: He did seem to dwell on things, and maybe start reading more into things than what there actually was.

Mary: Well I think –

Philip: - and it seemed to compound. I don't know. That's just what –

Mary: I think the way him and [Anthony’s wife’s name] had started, she'd started going to the hospital with him, and then she found out it's these x chromosomes for what his Alports. And I think he found more into his illness than what he had done before. Really. I think so.

Many spoke about getting issues with their calcium and phosphorous levels, with people saying they had calcium deposits build up in their joints. Robin said he had experienced cardiac issues as a result of the calcification of his arteries. He had undergone advanced cardiovascular operations including a new pacemaker and heart valve. Other people spoke about having operations to remove their parathyroid glands, and to remove eye cataracts. Some people mentioned taking iron tablets to counteract anaemia. Several people mentioned having stomach issues ranging from indigestion to stomach ulcers as a side effect of taking medication.

Paul talks about his medication changing over the years depending on what stage he was at.

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And can you tell me about like medication throughout?

Paul: Yeah. Lots.

What sort of medication you've been on, and?

Christine: [laughing]

Any side effects, and?

Paul: Mmm. Side effects?

Christine: And there is always a side effect.

Paul: Oh, crikey. I don't know. There's just so many different medicines, depending on what stage I was at. I've been on things to make - fill me up with potassium, because I hadn't enough potassium. When you're on dialysis, you've got to keep off potassium, and you can't have any potassium. So you've got to take that. And phosphate as well, build up your phosphate. When you're on dialysis you've got to keep off phosphate so you have to take phosphate binders to bind the phosphate when you get rid of it.

So it's contradicting the whole time, all the way through. It's .

Christine: Mmm. And that was a - the drugs and that are a constant battle, along with the nutrition. Nutrition, isn't it, and the diet.

Paul: Yeah. What you can and can't eat and drink. And what you, what your drugs are, it's just a constant balancing act. I've had drugs like Minoxidil, which makes your hair grow, which obviously didn't work. [laughing] All sorts of things, haven't we. I'm currently on lots of immunosuppressants for the transplant. Which, the last time I was at clinic, about six weeks ago, they doubled my - one of them. And I think that's what's causing my stomach problems [laughing] at the moment. [dog barks in the background] Which I've got to speak to them the next time I go up about, and hopefully they'll reduce it a little bit. Or at least I think that's what it is, I just - I'm confused now, because there's so many people around with bugs at this time of year as well. But it just seems like it's happened since then.

But I don't know whether that's just a coincidence.
So it's a case of telling them how I'm feeling, and hopefully they'll look into it and, and do something about it. But yeah.

Christine: Do you think they've changed a lot, since when you were perhaps on your first transplant?

Paul: I'm on completely different drugs that I was ever on, on my first transplant. And even my second transplant.

Christine: A whole new set of drugs, so things have moved on, and.

Paul: Completely different. The first transplant, second one, third one. Completely different. The only one that's stable is the prednisolone steroid, which makes your fat go - makes your fat go - which makes your face go rounded. The kidney face, they call it.

Christine: That's his excuse [laughing].

Paul: It makes you eat a lot. And it gives you a bloated face look.

Which I think some earlier photographs of me and my brother were pretty horrendous in early days, because they - it was, it was a lot of steroids in those days. They don't give you quite so much now. But there was a lot of steroids in those days.

Diane says that her stomach hurts from the medication but overall she wants to continue taking her medication.

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Diane says that her stomach hurts from the medication but overall she wants to continue taking her medication.

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Age at diagnosis: 35

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I know, I did have a chat with my doctor about it, because I know - and also I do Facebook, there's a lot of people - it's different with different area, as to whether they keep you on steroids or take you off. And I had a word with my doctor to see how she felt about it [sigh]. I mean, she - yeah. I mean, I, I'm perfectly happy to stay on it, because if everything's going well, then as far as I'm concerned that is my main worry. But I do know the - did say they could make you gain weight. You know, it hasn't been too bad, so. It's not a major issue. It gives you cataracts. And all sorts of things. I think it can make your joints hurt [laugh]. Yeah, so there's - you know - I'm - you know, all the medication I take, you know, all has horrific side effects
Well yeah, I think - think it's basically [laugh]. I take like the steroids and the two different types of anti-rejection medication to control my immune system. And then everything else is to counteract what the medication does. So I also take two different types of blood pressure medication. And some medication for my stomach. Because [laugh], all the medication it hurts my stomach.

People felt a range of different things regarding the side effects from their medication or treatment that they had undergone. Richard X talked about the medication that he took after his transplant and felt that it was not a big deal because it “keeps you alive”. Similarly, Kevin felt the adjustments made to his medication to lessen side effects were, “small potatoes” as overall he felt things were working quite well. Many people said they felt an immediate difference after a transplant, and saw side effects as a “small price to pay”. Debra said that she was not going to complain about just taking her one blood pressure medication. Michael Y said it was a just an inconvenience taking his blood pressure tablets. At the same time, others like Diane said she experienced horrific side effects. Angela felt there was really no choice whether to take post-transplant medication and tried to reduce some of the other medication she took.

Some people said that they didn’t feel the side effects from medication were too bad. Alison who was on steroids and immunosuppressants after her transplant, said overall she felt lucky as she didn’t get as many side effects as some people and her hair loss was nothing compared to possible kidney rejection. Michael Y who took blood pressure medication said he was “reacting fine” to his medication. People like Robin spoke about how medication had changed and improved over the years. Richard X said that “things have moved on a bit” when he thinks back to his first transplant medication. People also mentioned connecting with others online and checking whether the side effects they were experiencing were common.

Kevin explains his medication after transplant and how this is constantly adjusted.

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Age at interview: 42

Sex: Male

Age at diagnosis: 6

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I mean you're always on a lot of meds once you've had a transplant. So a lot of what was going on was trying to adjust the medication to make the kidney work effectively without making me feel too sick at the same time. So yeah, so there was a constant adjustment with the meds. I was on quite a high steroid dose, dose for quite a long time as well, which gave me some of the minor side effects, but nothing too concerning. I started sprouting hairs where nobody would normally sprout hairs. Not on my head, obviously, that didn't work. But yeah, other than that it was really just a case of constantly adjusting the medication. And that still goes on, I mean, we're still trying to adapt my meds now. The latest one is that my calcium is too high. Which, it gives them cause for concern. But I have to take calcium tablets, to - as a phosphate binder. So it's trying to balance the binding phosphate, but not overdoing it on the calcium. So that's - you know - that's what we're working on at the moment. But as far as I'm concerned it's, these are small potatoes really. This is, this is minor adjustments to something that's working quite well.

So, yeah. But we did have a bit of an issue couple of months ago, because they stopped my calcium altogether, to see what would happen with that. And what happened with that wasn't great, because I suddenly couldn't feel my hands and feet particularly well, and I was really ill. So we sorted that out, and I'm alright now, but yeah. I mean, you get little blips from time to time. But yeah, there's a lot of meds. But again, I don't really think about that. That's my new routine. So whereas I used to have to dialysis four times a day, now I just take some tablets twice a day. It's not that big a deal. It's just some tablets.

And how many do you take? So you say twice a day?

I take, in total - think there's - at the moment, I take about fifteen tablets in a morning. And five at night. But I just take them all at once, so it - it looks more dramatic than it is. It's just a big handful and a glass of water, and that's it.

Alison talks about the side effects of her medication including hair loss and feeling more emotional.

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Age at interview: 33

Sex: Female

Age at diagnosis: 20

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No, I feel fine. I was quite lucky, I didn't get as many side effects as some people do. When I was in hospital they gave me seven A4 pieces of paper, so I think that was - there were seven different medications that had side effects that they were addressing. So you had to read about these side effects. And almost every single medication I was put on, one of the side effects mentioned was increased - being emotional. So I was just waiting for the day where I was gonna break down, and I could see in the ward, everybody had their day where they would just sit and cry. And, it's not happening to me. But it did. There was actually a day, it just - it hit me. You know, my boyfriend had came in and said how everybody was asking for me, and how there had been so much support on, on Facebook. Everybody's on Facebook these days, and I hadn't been on the internet. So he, he let me see it. And that's when it, it just kind of hit me. It's always when you see that there's so many people that care, that that's when it hits you [laugh]. Yeah.

When my hair started falling out, that was the one that I went straight onto social media about. And it was quite a relief to find out that I wasn't the only person that had happened to, and there were others out there that had gone through the same thing. And they hadn't had it explained to them that this medication, you know, this is a side effect. Because I remember telling, speaking to my GP about it, "My hair's falling out all of a sudden." And him saying "Oh yeah, that is a side effect." Well, it would have been nice to have been made aware of that, so it wasn't such a shock when it happened. It was just one day in the shower, just chunks of it all coming out. This isn't normal [laugh].