Following my developing myositis, I switched up from 4mg pred, first to 12mg and then to 24mg methyl pred daily. The 3 weeks on 12mg seemed to have little impact, but a further week on 24mg has been a revelation.
The myositis symptoms are little changed but for practically the first time in 2 years, I am alert and energetic. From getting up in the morning to - reluctantly - returning to bed in the evening, I have a new life.
This suggests that secondary adrenal insufficiency plus unsuitable steroid dosing has been a significant factor in the last 2 years of misery - including my enforced retirement from work. Worryingly, despite being seen in casualty three times, and referrals to neurology, sleep specialists, physiotherapy, occupational therapy and finally, endocrinology, not a single clinician suggested this possibility. The one-off, afternoon blood level of cortisol showed a normal level, they said, so that could not explain my symptoms. It was only after I had persisted, and paid to do a home test for saliva cortisol that things changed. The test showed that my morning levels were almost undetectable. A synacthen test confirmed secondary adrenal suppression, but even then, the endocrinologist suggested increasing my daily pred by no more than one milligram. It didn't help.
It's taken this myositis crisis to prompt us to see what might happen if we completely eliminated inadequate steroids as a possible factor. Turns out that on 24mg, not only has much of my fatigue lifted, but the daily episodes of sweating, shaking, muscle rigidity and nausea have almost vanished.
So my lesson this time is never to underestimate secondary adrenal suppression and steroid dosing as a cause of inexplicable symptoms - even if your medics dismiss it.
What happens when it comes to reducing this time round is going to be a whole other story - but for now, I'm happy enough.
SPOILER ALERT: Things were to change sooner than I had hoped....