I was diagnosed in 2025 as 3b with micro-satellites, no lymph node involvement. Was resected and put on a course of pembrolizumab. I had six doses, the last in May this year, but was already suffering with very painful upper arms and shoulders that painkillers could not touch and which were affecting my ability to dress, sleep, etc.. I was put on a steroid - prednisolone - at the end of May and gained immediate relief. The rheumatologist gave a clinical diagnosis of immunotherapy- induced polymyalgia rheumatica (PMR). I'm tapering down the steroid dose and am currently on 7.5mg.
I had to look at either restarting the pembro or missing the last three doses. To cut a longiish story short, I had a really good meeting a couple of weeks ago with the lead oncologist at my specialist hospital where we reviewed the scant clinical evidence on this dilemma, the risk/benefit aspects, the severity of my PMR and what the plan might be if I get a recurrence of the melanoma. We decided that I should stop the immunotherapy and go on to a maintenance programme with scans and dermatology and appointments with rheumatology to monitor the steroid dose. I'm happy with that decision. It's a bit of a gamble but at 76 with an eye on quality of life, it's a gamble I'm prepared to take.
Has anyone else had to take this decision? How did it turn out for you?
