Patient Perspective: Vasculitis patients and prednisolone: good and bad?

This week’s #NephJC paper examines the novel C5aR inhibitor Avacopan and its ability to replace glucocorticoids (GC) in the treatment of active ANCA-associated vasculitis (AAV). As soon as we decided to look at this study we approached our colleagues Susan and John Mills at Vasculitis UK (web, twitter) to see if they could gather some patient experiences of being treated with GC. Susan and John kindly approached the community of people living with vasculitis and sent on replies to us. We were overwhelmed by the response, receiving 25 accounts.

Approximately half of respondents identified that taking GC had helped their illness, some could identify something specific such as “The effects…were rapid and 24 hours [later] I was off all pain killers” or “it enables me to…taste and smell.” Whilst others were more general in their appreciation, “Gave me back my old me to a certain extent” and some were happy to ascribe GC with the ultimate accolade: “Saved my life”.

All respondents identified at least one negative experience whilst taking GC. Mood disturbances and weight gain were most frequently cited (10 replies), followed closely by fluid retention and bone problems such as overt fractures and osteopaenia (9). Next came thin skin (7), cataracts and insomnia (6), and finally muscle problems and new hypertension (3 and 2).

I was interested to hear how mood disturbances affected relationships, “mood swings were significant at first…This was more notable to people around me than it was to me, particularly those close to me”, and ability to work, “I become easily agitated, and quit my job abruptly.” In this light, the fewer mood symptoms seen in subjects taking avacopan in this week’s study must be seen as a plus.

With regards to weight gain, it was thought-provoking to see that although many patients mentioned the classical moon face appearance, it was the Cushingoid truncal obesity that seemed to motivate the strongest feelings, “…a big redistribution. I now have too much [weight] in the middle, but thin arms and legs.” The numbers of weight gain events >10kg were relatively small in the avacopan study, making conclusions difficult.

Interestingly, only two replies mentioned lipid abnormalities and diabetes and none referred to infections or sepsis. Whilst similar small numbers of infections were seen in the groups in the avacopan study, a possible signal towards fewer side effects related to glucose (hyperglycaemia, diabetes, increased blood glucose) was seen.

I think the last word should go to one respondent: “I WOULD ABSOLUTELY LOVE TO HAVE ANOTHER DRUG THAT SUPPRESSED MY [vasculitis} AND DID NOT GIVE ME THESE SIDE EFFECTS.” I cannot think of a better rallying cry than that; will avacopan be that drug? We will probably have to wait for the results of the ongoing phase III study to know for sure.