Seven and a half months of prednisolone and still going. I had been warned the latter stages were the hard bit. At the beginning, on very high dosage, when I felt continually jittery and couldn’t sleep or taste anything, that was hard to imagine. It’s been a long hard road weaning down through them, with the last 3 months the tail on the curve where overall dosage is low, and the step reductions are miniscule. With hindsight, the sweet spot was around 15 micro grams a day, when I could sleep and taste, and also had all my checkpoint inhibitor induced mess under control. Right now, I am on the second week at 1 microgram per day. Theoretically I next move to having one of these tablets every other day for 2 weeks, and then I am done.
Reasons for getting on with this include reducing the risks from having been on steroids long term, including that my adrenal glands won’t kick in again properly. The research indicates that the typical time to resolve this matches the length of time you were on steroids, that most people recover if they were on steroids for less than 9 months, but that issues increase particularly for people who have been on steroids for more than a year. If all goes well I should be off them within 9 months of starting them, with a couple of weeks to spare.
Reasons for not getting on with it are my continuing inflammation related symptoms, plus some signs of adrenal insufficiency on my current dosage. My left foot feels like a brick, with the obvious implications on my walking gait (inflammation in the spine pressing on sciatic nerve). Additionally I feel like I am wearing a knee high compression sock and on the worst days my buttock is also affected. Lungs still not great (pneumonitis) although my walking is so slow at present, that’s not really a problem. Nephritis no longer a problem - creatinine stabilised at 85 so oncology no longer concerned about me, despite my other symptoms. I guess they are neither life threatening nor likely to get in the way of any plans to put me on more treatment. Adrenal insufficiency symptoms are mild and comprise fatigue, general stiffness and achiness, low grade headaches and night sweats. A bit like menopause all over again. One, perhaps the only benefit of having TNBC over a more usual oestrogen driven breast cancer, is that I don’t have to put up with the side effects of hormone blockers which I imagine make you feel like this all the time.
I sought advice from oncology about whether to continue to progress the wean, or stay where I am for now. “You are the best judge” was the answer. Finding it quite difficult to decide.
