Hi all
I had a primary in my left thigh which spread to my lungs. Mettastatic Melanoma. I have been receiving immunotherapy. I managed three courses of IPI/Nivo before I got ill with colitis and then pneumonitis. Steroids have been given to me and have been effective although it took a while and couple of hospital stays. The decision was taken not to give me a fourth cycle of IPI/Nivo which is understandable and after a while I was started on a 'maintenance' course of Nivolumab only. I've now got inflammation in some of my joints and again am managing that with steroids. My consultant said that if the amount of steroids is moderate / low it shouldn't stop me being able to continue with the maintenance immunotherapy.
My question is that they want me to ween down each month which means that the pain in my joints increases - a lot! Once I've had treatment I go back up on the steroids and it's managable. I think I understand why I need to be on a low dose when I have treatment so they're not fighting each other (one suppressing my immune system and the other turbo charging it) but has anyone kept a fairly constant amount of steroid intake and just skipped a day when it's treatment time?
