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.”

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.”

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.

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.

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.

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.

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.”

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.

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.

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.”

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.

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.

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.