Side effects of steroids and other systemic vasculitis medication

This page is about:
  • Side effects of steroids
  • Reducing steroids
  • Side effects of other systemic vasculitis-related medication
People told us that medication for vasculitis affects the body, the mind, and behaviour but that it is not always clear what is a side effect of medication rather than the vasculitis itself or something else.

Side effects of steroids

It’s fair to say that the people we spoke to often described a love/hate relationship with steroids. These drugs were necessary to suppress vasculitis, but they also came with immediate and longer-term side effects. Katy was unusual in saying, “I don’t really get side effects, not that I’ve noticed.”
People sometimes used humour to talk about how the initial high dose of steroid affected them.

Isabel is grateful her vasculitis was treated with steroids but says they had her “flying through sudoku.”

Yes, it came out of the blue. I just sort of, I think, wakened up one morning and could hardly get out of bed. That my husband came round and was pulling me sort of up out of bed, and I did manage to go down to the doctor’s, he took me down and I got a quick appointment and I managed to go down there, feeling really quite, wondering what on earth had happened to me [laughs]. But as I say, it was straight on to steroids, which I’m very grateful for.

And, but I really did quite well, I can’t say I was feeling very, very ill or anything like that. I had the usual things when you go on to steroids, falling out with my husband, falling out with my son [laughs]. They couldn’t keep me going in sudoku, I was flying through sudoku, but that quickly, that quickly went down, and I got back to my old nature again [laughs].

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Marie “felt like Superwoman.” Even though she was also going through chemotherapy, Wendy “loved everybody, everybody was wonderful, I wanted to get a puppy.” Mo referenced a character in The Magic Roundabout saying that in 24 hours she went from “death’s door to Zebedee…can’t put me down, I’m all over the place.”
However, this steroid ‘high’ was also a real concern.

Wendy found high dose steroids were “not good for me mentally.”

Anyway, so I had the methylpred, and that was when I got aware that, actually, prednisolone is not good for me mentally, because I found myself, I had a, one cath, catheter thing in the back of my hand, because they were doing it once a day but I was going home in-between, or I went home to pick some more stuff up, and normally I stayed with my friend, and I decided for reasons best known to myself, that I’d play ball with the dog in the garden. And I’d lived in this house, it would have been about four years by that time, four or five years. And I’d thrown the ball over the, into the school playground by mistake [laughs], and I just didn’t think twice, I just went and got a chair and started to climb over the wall. Now, I’ve never ever felt the need to climb over that wall ever before, it really wouldn’t be something I would try and do. You know, I’m not someone who likes climbing walls. But I, I got one leg over and I was sitting on top of the wall, and I thought, “Hang on, this isn’t such a good idea, how did I end up here?” and then I was really worried about my hand and, you know, the whole business, so anyway, I managed to get myself out before I did any damage, but I thought, “Hmm, maybe I shouldn’t be driving?” you know, “Maybe I should be taking it slowly.”

So anyway, yeah, that, that was a hard time.

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Graham feels high dose steroids made him “selfish” and impulsive. In the beginning, Roberta was “totally hyper,” “talking gobbledygook” and “lucky if I got two hours’ sleep,” while Isabella was “a bit of a zombie” after being awake “half the night.” The second time that Wendy was put on a high dose, she had suicidal thoughts, and needed support from a friend and a specialist nurse to stay safe while she reduced it.
Another common story was summed up by Mo saying, “Nobody really warns you about the ferociousness of high-dose steroids and how it affects you. You just can’t stop eating.” As Grant likes his food anyway, this was “probably not the best combination.” Marie would even “sleep eat” and not remember the next day. Although Roberta had initial weight loss, it was more usual for people to put weight on, sometimes gaining several stones and having to buy new clothes in a bigger size.

When Salma gained weight on steroids, her husband – a tailor – adjusted or made her clothes to fit.

Well I don’t know if this counts or not, but when I first started the steroid, steroids, then I found, obviously some people, lots of people have different side effects from steroids and I found that I was having my, I don’t know if you know, but there’s a side effect called moon, moon face, so unfortunately my face just swelled up like a moon or a balloon, and it made me feel very conscious of how I looked to somebody who didn’t know me and who didn’t know that I was taking medication because I wasn’t well. And at that time also I lost all my hair, because of the steroids.

So, I mean [sighs] the steroids were good for me in, obviously in terms of helping me get better, but unfortunately they have such bad side effects for some people. I have to say my dad, he never ever had that problem with steroids, and – because he had a kidney condition and he had had a transplant, but he was on a maintenance dose of steroids, you know, after the transplant – and he didn’t get any sort of swelling of the face or body or anything like that. I mean my shoe size went up from five to six right at the beginning, and clothing as well. I, luckily my husband is a tailor so he used to make, you know, adjust my clothes if I, if they could be adjusted or he’d make me something that would, you know, that would look okay on me rather than everything being too tight.

On top of that I also have, I forgot to tell you earlier, steroid induced diabetes, so, because of the steroids that they gave me right at the beginning, I developed diabetes. I’ve been on insulin twice when they’ve, my sugar levels were getting too high, and I’ve also been just on tablets as well, which I am at the moment.

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As described by Salma, the ‘moon face’ side effect also meant people struggled to come to terms with the change in how they looked and felt. Angharad was “self-conscious” and, when Karen gained weight, “my appearance completely changed, I looked a lot older, I wasn’t very energetic.”

Angharad found the weight gain, sweating and osteoporosis from steroids a difficult combination.

So there’s like a resource centre nearby you know, obviously run by the health board and there’s like sort of a little gym area in there, so he helped me sort of build up some of that, that fitness in the muscle that I’d lost and because I’d gained a lot of weight? When I, when I was unwell I probably lost about four or five kilos, but when I started the steroids I put on about twenty – maybe a bit more – kilos and that’s a lot of weight and obviously it left me feeling very self-conscious, because suddenly I’d gone from being a nice size to a size I wasn’t comfortable in. It wasn’t physically comfortable either because the steroids cause a lot of sweating, and that was very difficult just sitting there literally feeling that sweat running down your back and knowing that there’s nothing you can do about it you know.

The tiredness and the fatigue was difficult. Like when I was in uni I’d have to sort of put my head on the desk partly because I felt light-headed but also to, just to shut my eyes for two minutes because like I was struggling because they were long days as well. Hopefully the lecturers didn’t [laughs] notice that. I mean I didn’t fall asleep but I just needed to sort of try and shut down my body a little bit just to sort of relax.

I was also diagnosed with osteoporosis as well, because of the steroids, so that obviously adds extra problems you know, and then they’re like, “Well you need to do weight bearing exercises,” but then when you can’t walk it’s very difficult to do that you know so.

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Some women we spoke to mentioned changes to their hair, including hair loss and hair growth. Salma said that “in the end I didn’t have very much left attached to my head and therefore I just had it all taken off and then it re-grew as the steroids became less and less.” Graham’s skin has thinned so that “every time I shave, I can get cuts.”

Steroids have done “weird” things to Holly’s head and body hair and teeth.

There’s a lot of side effects of the prednisolone which pretty much everyone with vasculitis is on, because it’s the treatment, it’s kind of the only treatment really. The steroids do some really weird things, one thing that I don’t think is even listed as a side effect, but I’m not joking, quite literally every single person in the support group has said this has happened to them, is it makes your hair go really curly [laughs] which is strange [laughs] so I now have incredibly curly hair, whereas I used to have quite straight hair and everyone else in the support group, when people have been posting me and they’re like, “Has your hair gone curly since being on the prednisolone?” and it’s had like literally hundreds of comments being like, “Yeah, same thing.”

There’re other side effects that which are really strange, like, which are not pleasant, like teeth my teeth have become much worse since I’ve been on the medication for it, I think it does something to your gums, like makes them loose, it makes the teeth loose in your gums or something. Hair loss, I’ve got hair loss as a result of the medication that I’ve been on, as well as hair growth. I’ve got hair loss here [points to head] but hair growth on my arms and things like that, very strange.

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Richard, Marie and Graham have noticed “brain fog.” Steve and Grant associated breathlessness with both their vasculitis and with steroids.

Richard feels steroids have affected his concentration and made him more irritable.

The one area where I am aware of steroid affecting me is kind of, mental, is in my brain. A couple of aspects to it, one is affecting my ability to concentrate, and I think the steroid comes into that, I don’t think it’s all, just I’m getting older, I haven’t worked for eight plus years or whatever, no. Because that could be a factor you know, just you’re not used to working.

But actually, no, during the time I have had, you know, I’ve been doing things for charities and what have you, that have required me to concentrate and work, but I do find it hard to concentrate for any length of time now. So that I, I could do a, a, a shortish burst of work concentrating, you know, proofreading a document or making comments on it, that kind of thing and, and then I have to finish and just go away. And in fact, sometimes I can’t even start the process, there, there are times I’ve come through, to sit here at the computer and just thought, “Och, I can’t be bothered, no, I’m just, I can’t switch on,” and away I go.

So, the concentration bit, I think is from the steroid. The other area I think is definitely the steroid is, and it’s kind of linked but slightly different is, irritability. I find, if, [sighs] well I actually told colleagues, I’ve been involved all my life in the [a youth organisation] and involved at, you know, regional level sitting on committees, I had to say to the folk, “Look, pull me up if I’m grumpy, irritable.” I found I would make snap decisions, just something, you know, some situation I’d say, “Och, dum-dum-dum.” You know, that’s what we should do, instead of, well it’s not really my nature, think more carefully and what have you. And I would be annoyed if there was some way I thought, “Oh, that’s stupid,” and so on.

So, I had to say to my colleagues, “Look, pull me up if, don’t just sit and take it. If you think I’m being unreasonable, say. Because I know I’m doing it and need to be told about it.” And I found that very, I found that annoying because it’s not me and, but it was affecting my involvement and what I could do, and I just, I have to try and, even now just work on it, just make sure, don’t immediately react to anything. Let’s just be calm, count to ten.

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Other longer-term side effects of steroids that people had experienced included steroid-induced diabetes, cataracts, glaucoma, acid reflux, stomach upsets, muscle weakness, and osteoporosis leading to bone fractures.

Reducing steroids

People started on high dose steroids then had to reduce them gradually (“tapering”). Although Claudia was aware that this could be hard, “for me it wasn’t.” Marie and Nicola were among the many people we spoke to who struggled with it.

Marie struggled to cope with reducing steroids. Following advice from a wellbeing service, she found antidepressants were “a gamechanger.”

Yes, I was great when I had all of the steroids, I thought, “Fantastic, this is great, I can maybe grow a singing business,” but then when I started to taper down, for me, the worst thing was that I seemed to have very severe problems in terms of emotional downturn, as well as chronic fatigue, pain, yes, but mine was more so to do with chronic fatigue and mood swings, depression.

And I’ve now read that there, there is kind of steroid psychosis, and I could probably reckon that the medical [laughs] profession and the people I visited probably could say, yep, I definitely suffered from steroid psychosis, because I look back and I say to myself, “Who was that person?” You know, I was reacting in a way that just was totally abnormal for me. And stress – I couldn’t handle well. Emotions – couldn’t handle well. I was crying for no reason at all. So emotionally, I was a different person.

But she did come up with something that I never thought of – and this is why it’s so important to have a range of people talking to you, talking about observations. She said, “What I don’t understand is that you’ve got all this medication, but the thing that’s really affecting you is not being treated, which is the depression, the emotional fallout, the whatever. Has anybody talked about putting you on antidepressants?”

I said, “Well, I do have a wee amitriptyline to try and help with sleep, which is apparently, but it does nothing at all.” They said, “I think you should go back and actually ask for antidepressants,” because that might be the thing that helps me reduce – because I kept having to go up steroids and down steroids and up steroids and down steroids. And it wasn’t to do with pain, it was to do with the fact that I wasn’t coping.

So, I did do that. I went to the GP, and I said, “What about antidepressants?” And I have to say, at that point in time it was a gamechanger. It was a gamechanger because the part that wasn’t being dealt with, the part that was limiting everything was the psychosis of it?

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As people got to lower steroid doses, they often said that it was common for even tiny reductions to produce symptoms such as aches and pains; Holly finds that “unfortunately the withdrawal side effects also mimics the vasculitis being active.” Dawn suggested that it’s difficult to get off steroids “until your body’s ready.” The achy bones and fatigue made it challenging for her to stop the final milligram, so she made changes to her diet which “just gave me something to believe in.”

Side effects of other systemic vasculitis-related medication

Some vasculitis medication was given by infusions to the body. With cyclophosphamide, Jeremy got “mild headaches” and became “mentally lethargic” but said he could accept this because it was likely to be temporary. However, Wendy was “wrecked,” Nicola was “wiped out,” and both were very sick.

After chemotherapy for vasculitis, Charlie was like “a Victorian ghost.” He feels it was hard on his wife.

I think some of it is really just the challenge of seeing someone so ill, I think. I think its examples were, like, I mean, yeah, these are horrendous ones where we would be in lockdown or something else going on, I would leave the house to visit the hospital, I would have my cyclophosphamide treatment for the whole day, it was really, really long. Then I’d come back, and I would look like a Victorian ghost, I just looked so ill and unwell and a million miles away from the person that left the house in the morning. And then my wife had to experience that and see that, and to then try to minimise the problems for me with all of that and I think it’s incredibly challenging to see someone from a treatment that will help you in the long-term, to affect someone in such an awful way, to turn them from being themselves into something that isn’t themselves. And I think for family, that’s incredibly difficult to see.

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It was common for people to describe feeling tired and sleeping a lot after cyclophosphamide. Isabella felt “off-colour” but not as bad as she had expected; she also noticed strange patterns of hair loss and growth afterwards.
Chemotherapy also affected people’s fertility. It “chucked” Nicola into menopause and her periods “just completely stopped.”

Grant and his wife were told that chemotherapy for vasculitis could affect any plans for more children. He was shocked by how “life changing” this could have been.

Yeah, so you, you were saying that when you were first diagnosed, the consultant spoke to your wife because you were going to be getting cyclophosphamide.

Yeah. Yeah, it was, I’m sure it was the cyclophosphamide that they were saying, it’s quite a, quite a harsh drug, if you like or, to give the initial kickstart of the recovery, if you like. And one thing he said, “Oh, we’ll maybe…” he said, “I’d either speak with your wife, or she kind of,” he wanted my wife to be in there, to actually say, speak about family, whether I had kids, whether I was planning to have any more.

And luckily, the age, our kids were kind of up, so we was, genuinely wasn’t looking for any more, but then – and that was me at maybe 30, like I said, I’d have been 31 say, maybe, 31, aye, 31, 32, so. I mean, and I dare say there may be younger patients. So to get told that maybe five year prior to that, maybe 20, when you maybe did look to have a family, again, that could be a, and in the very time, I actually had a friend, or a kind of friend, he was, him and his wife were struggling and a similar kind of age to me, to kind of have kids, so I’m just thinking, that kind of, that would be a shock to the system if you’re maybe planning to have children at a later stage in life and then this kind of comes about, and because of that, it kind of could potentially make you, you more, less likely to have kids, so that was a bit of a, although it didn’t impact me directly, it’s a way I kind of thought of anyone or other people who might have been in the same boat, who didn’t, who wasn’t lucky enough to kind of have kids, it could have been a, it wouldn’t have been a nice situation, really, if you were planning that, so.

That was a kind of little bit of a, again, shock to the system, just hearing it and how, how serious it potentially, the medication was going to be or what needed to be. Although it didn’t directly impact me, it was something worth mentioning, really, to think, you know what I mean? To, not to scare people as such, but just to kind of, to stress how, how kind of life changing it potentially could have been.

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With rituximab infusions, Wendy “itched and itched and itched” and had a weird headache, while Gail felt “a bit tired.”

Jeremy found infusions of rituximab for vasculitis were “nothing to worry about.”

All I could say it’s what one sees on various hospital programmes [smiles], you know? You sit in a chair or on a bed and you know, they hang up a bottle, a drip alongside you and fluid is fed into whichever part of your anatomy they’re doing. In this case, and I think in many cases, it’s probably through the arm or like that. And you’ve just got to stay reasonably still while it’s done, so, you know, take a book to read or something [laughs]. Cos it might last hours with rituximab, but I mean the cyclophosphamide sessions, I think, I can’t remember now. Certainly, no more than an hour. I think they might have been less than an hour, each session.

The rituximab, I was warned it could be, you know, five to six hours which it could have been. As things went fairly well with me and they were, and it didn’t cause any side-effects during the transfusion, they were able to gradually increase the rate of flow of those. So, I think they only took about three, three and a half hours on it, so that’s not a problem. Obviously, I knew to bring a book or my Kindle or whatever it was to keep me occupied. I knew to bring some sandwiches with me, because I had checked, you know, “Can one eat whilst doing it?” “Oh, yes.” And I knew hospital sandwiches weren’t something to rely on, even if they were offered, which they weren’t. They expect day patients to bring their own stuff in [laughs]. So that makes a very, sort of, you know, nothing to worry about.

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Other vasculitis medication was taken as tablets or sometimes injections. People on more than one immunosuppressant were not always clear where the side effect was coming from.

Side effects of Diane’s vasculitis medication include frizzy hair, nausea and what “people maybe won’t talk about” – low libido.

Medication side effects, my hair would have been lovely and curly and hard to manage, but ever since I went on to – I can’t quite figure out whether it was the prednisolone or the methotrexate or a combination of both – but my hair just is now curly, hard to manage, and frizzy. And [clears throat] I went through a phase before, so before I went on to the medication, just sort of in the last year, year and-a-half, I had just got the hair sorted out from the last time being on the medication. And I had lovely treatments done and it was all looking fabulous, and I would have had blonde colour through my hair, and we toned it down so it wouldn’t be as frizzy.

And then the next thing, slap-bang. I think I had my last hair treatment in December and then I was told in January I would have, had to go back on to the methotrexate again and the steroids. So [sighs], yeah, so now I don’t even bother, I just normally put it up in a ponytail [laughs].

But then, obviously, you’ve got the horrible side effects of the, the methotrexate: the nausea, the irregular bowel movements. And then your, the steroids and the hydroxychloroquine – like we talked about a wee bit – it definitely impacts your mood. The other thing that a whole, a lot of people maybe won’t talk about is that it definitely affects your libido, so that obviously then affects your relationship with your husband or your partner.

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Azathioprine made Jeremy feel temporarily dizzy and gave Melissa and Wendy problems with their tummy, but Isabella has had no problems. Claudia “can’t tolerate” it, which is a problem because she would like to have a baby and azathioprine is considered safe for pregnancy. Angharad is unsure whether “feeling sick half the week and just feeling horrible” is worth the benefits of methotrexate.

Brenda’s doctor reduced her mycophenolate dose as side effects were “very, very tough.” She also reacted badly to painkillers.

It’s mycophenolate really, that was the one that I was given. They were very tough at the beginning, you know? They were, really, really made me feel, you know, palpitations. You know, I’d stand up and I would faint and I would just, you know, just very, very tough. And when she increased them three years ago, I cried really, because I thought, you know, “I can’t take any more of this drug,” you know, “please don’t give me,” and she said, “Look, we’ve got to.” She said, “Because you’re going to keep having these relapses and we’ve got to stop them.” So, she didn’t give me the full dose, she said, “Look, I’ll give you another half dose of…” you know, the next bit would be the full dose but I’m not on the completely full dose because she said, “I know you can’t take any more,” and my body just couldn’t take any more.

But I’ve also got to say, the pain, the pain of the nerve damage, nobody could describe it. It’s unbelievable. And again, I tried all the different nerve painkillers, and I had a reaction to every single one of them. I ended up in hospital, one of the painkillers, I don’t even remember leaving the house, I was taken in an ambulance. The other painkiller, I was covered in a rash from my head to my toe. Another one, palpitations were so bad I had to come off them, so I ended up with no painkillers for the nerve damage. But then one doctor gave me patches, which he said were very expensive, and they were the first thing, but I used – you only put them on 12 hours on and 12 hours off – and I used to sit and just wait for the 12 hours so I could get them on again. But eventually all that sort of calmed down and just, so this is where I am.

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We also heard about a range of side effects from other drugs associated with vasculitis treatment, including antibiotics, painkillers, and the anti-rejection drugs that come with a kidney transplant.