Re: pituitary inflammation

I was treated with 3mg/kg Ipi. Four infusions at 3 weeks intervals during summer 2015. No maintenance doses.

I had an inflamed pituitary as a side effect of being on the Ipi. Although I had headaches, I did not realise their significance, so the first indication that my team had that I was in trouble was me barely being able to walk!

I never went onto the high dose prednisolone. I was put on 10 mg/day and felt fine within 15 minutes of taking the first dose. However, this was probably because the damage had been done and I was suffeing from lack of cortisol in my system rather that the actual inflamation of my pituitary, which had subsided.

I had the MRI weeks later, which confirmed damage to my anterior pitiuitary. In my case the damage is almost certainly permanent.  I have now have no anterior pituitary activity.

That was a year ago. During that year, I had one episode (about three weeks) where the ipi side effects started again and I was briefly on 15 mg/day prednisolone.

I have never coped on less than 7.5 mg prednisolone/day. In the end, my endocrinologist has accepted that I am deeply miserable (barely able to function) on less than 8 mg/day, which is what I am taking. I know they think I am taking too much but they have accepted that I could be an outlier.

I am speculating, but it is possible that you have had one or all of three issues going on, (1) you may not get on with prednisiolone, (2) you may be suffering from the withdrawal of the high dose prednisolone and (3) in my experience '5mg/day prednisolone is one-size-suits-all' for cortisol replacement is just not true.

Have you seen an endrocrinologist yet?