Well, life has been good for a few weeks but it wasn’t to last. Hubby, who has incurable PC, was told to wean off the steroids he’s been on for about 4 years (Dexamethasone and Prednisolone) over a 5 week period preparatory to having Radium 223 in the autumn. It seemed a rather quick process, from 10mg halving dose each week, and sure enough withdrawal symptoms arrived once he was down to 2.5 mg: tiredness, lack of appetite, nausea, vomiting. His oncology team told him to go back on 5 mg but nothing changed. He hasn’t eaten properly for 3 weeks, has lost 1.5 st, even had an auditory hallucination one day, and fainted twice in 4 days due to a BP plunge. Same tests, same clear results in A&E each time. I accept we're not medically trained but our thinking was cortisol deficiency while they concentrated on tests and scans of his head and chest and ignored us. They even dismissed his pulse rate, which was pounding away at 40 bpm more than his usual low 50s and scaring him silly, as being perfectly ok even though a fast heart rate is another sign of low cortisol (as is also the darkened areas of skin he had).
In desperation he contacted our GP, hoping for a cortisol test to confirm whether that was the problem or not. No test but he was told to go back on 9 mg and gradually reduce by 1 mg every week. Even that seemed quick going by medical guidelines which recommend several months for the length of time he’s been on steroids, although that would vary according to dosage. 10 mg is a comparatively low dosage and in fact a later one as he started out on 2 mg Dexamethasone and then 5 mg Prednisolone, increased to 10 mg 2 years ago.
The possibility of radium treatment is slowly diminishing, which is a b****r as we understand his bone mets are spreading. In fact the ones in his hips and pelvis have finally begun to cause ‘painsomnia’ so he dozes during the day and still hardly eats. He has a lot to discuss when we at last see his consultant, his last 3 reviews having been postponed. Our stress levels are way high at present!
