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!
I am not a member of this forum (in fact I am female) but I saw the title steroid tapering and felt I had something to contribute from my experience, so I hope you don’t mind me chipping in.
In September 2023 I suffered a serious immunotherapy related adverse event that needed a steroid programme to help me recover. I spent a few days in hospital on IV steroids and after a few similar days in outpatients, I returned home on 60 mg of prednisolone a day. I was slowly reduced over 3 months until I was on 10mg a day, and then my problems began in getting down from that level. I went through a few false steps when I had to step back up, but essentially I went in the following steps: 7.5, 5, 3.5, 2.5, 2.5 alternating with 1, 1, then finally 1 every other day, over a 6 month period, spending at least 3 weeks on each step. The steps were somewhat constrained as the drug is available in 1mg, 2.5 and 5mg units. The first few days at each level were absolutely awful with the classic issues waiting for my body’s natural cortisol production kicking in. I did have a cortisol test at one point but my oncologist said the results would be skewed by me still being on steroids, albeit at a lower level. It took me several months to get my mojo back after I stropped completely.
I am not sure what you can read into this for your husband other than you have to go really really slowly and that it’s awfully difficult. When I was suffering from the insomnia and jitteriness of the early days on the very high doses, my oncologist told me the tail would be the hardest part. I didn’t believe her at the time but she was correct. I hope he can find a way through this.
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I think I was really lucky that the doctor who had the lead on my care at the time had managed other people through immunotherapy adverse events, so was very familiar with the challenges. I think you can taper more quickly if you haven’t been on them for long but it’s also a very individual thing finding out how you react.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
I am a Macmillan volunteer.
I have metastatic Triple Negative Breast Cancer, in remission
I hope that makes a difference
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
I am a Macmillan volunteer.
I have metastatic Triple Negative Breast Cancer, in remission
