I saw my endocrinologist for my currently biannual visit. I'll see him again in 6 months, but after that, maybe just annually.
My cortisol and ACTH numbers are unchanged, meaning basically nonexistent. ACTH is my pituitary gland, which would tell my adrenals to make cortisol -- but it doesn't anymore. Cortisol is what my adrenals would produce -- but they're not being told to anymore. Their ability to make cortisol is likely atrophied away now, in any case. He says it's unlikely that the ACTH function will come back.
He said they've seen multiple cases of immunotherapy-caused adrenal insufficiency. Most frequently it's the pituitary, and usually from Ipi. I'm currently on the Ipi/Nivolumab combo treatment, although in the Nivo-only phase. My oncologist is planning to give me an Ipi "booster" in the new year.
My endocrinologist is having me reduce my hydrocortisone dose from 15mg a.m. / 5mg p.m. to 10 and 5 mg. The lower the dose the better in terms of minimizing the effects of steroids. If I start feeling bad I will go back up.
My left knee has been a lot better since starting hydrocortisone (and prednisone before that). He is trying to find the lowest possible "physiological replacement does". It is still different than the natural process though, which may be why my knee feels better. I guess that may be a hidden benefit of adrenal insufficiency.
I think that's about it from that visit.
My cortisol and ACTH numbers are unchanged, meaning basically nonexistent. ACTH is my pituitary gland, which would tell my adrenals to make cortisol -- but it doesn't anymore. Cortisol is what my adrenals would produce -- but they're not being told to anymore. Their ability to make cortisol is likely atrophied away now, in any case. He says it's unlikely that the ACTH function will come back.
He said they've seen multiple cases of immunotherapy-caused adrenal insufficiency. Most frequently it's the pituitary, and usually from Ipi. I'm currently on the Ipi/Nivolumab combo treatment, although in the Nivo-only phase. My oncologist is planning to give me an Ipi "booster" in the new year.
My endocrinologist is having me reduce my hydrocortisone dose from 15mg a.m. / 5mg p.m. to 10 and 5 mg. The lower the dose the better in terms of minimizing the effects of steroids. If I start feeling bad I will go back up.
My left knee has been a lot better since starting hydrocortisone (and prednisone before that). He is trying to find the lowest possible "physiological replacement does". It is still different than the natural process though, which may be why my knee feels better. I guess that may be a hidden benefit of adrenal insufficiency.
I think that's about it from that visit.
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