My partner has been on steroids for 3 years, reducing slowly from 20mg with no flares (he's 72 and before pmr was able to join me on 5 to 6 mile walks in the Dales). He is on the last week of a 7 week taper from 3.5mg to 3mg. We had a wonderful two week Nile cruise in November when he was on 4mg . It was a fairly energetic holiday with daily excursions and he coped really well. Since the holiday he has used two 7 week taper plans to reduce to 3.5mg and now to 3mg. However, he's clearly entered the 'deathly fatigue' stage as he's got very little energy even when he feels well. Today he's developed an intermittent cough and generally feels unwell. I'm starting to worry as on 3rd March we're flying to Madeira for a two week holiday and I want him to be able to enjoy it, not feel totally wiped out as he does right now. Do you think he feels so tired because he's unwell and the Pred isn't providing enough cortisol? And should we up the Pred so that he can enjoy the holiday? I'd be grateful for advice please.
Too low or adrenals struggling?: My partner has... - PMRGCAuk
Too low or adrenals struggling?
Could be a combination of a few things -
Adrenals struggling for sure,
Too low a dose… no matter how you reduce, whether it’s ‘overnight’ or over 7 weeks, if dose is too low for your PMR, it’s too low…
Feeling unwell and cough could be COVID - or any other virus doing the rounds… and that will put extra pressure on already struggling adrenals.
Think you need to test for covid initially - although that may take a few attempts …
You could try a small increase, but if it’s purely adrenals, he may well in the same situation in future.
If it’s a virus [of any sort] plenty of TLC required… and if he’s too unwell for holiday, he’s too unwell, so you need to get the insurance docs out… 🤨
Thanks for your reply. He seems a bit better this morning so am keeping fingers crossed. We can cancel the villa we’ve booked up to 4pm on Tuesday so will see what the next few days bring.
Okay -just see how he goes.. but be realistic-don’t want to spoil holiday for both if you if he’s not alright.
At this stage I would feel that is a bit of a speedy taper! SnazzyD did 1/2mg at a time over about 3 or 4 months - the time your husband took for 1mg. And his taper was during winter - a time some rheumies suggest NOT reducing the dose!
How did he feel at 3.5mg? I'm also of the view it pays to hang around for a month at each new dose to assess how you feel. You shouldn't feel worse at the end of a taper than at the start - if you do, give it some time to see what happens. If it improves, all well and good. If it doesn't. you are in a position to remedy it appropriately.
If it were me, I would take 4mg for a few days and then see how I got on at 3,5mg. And since there isn't a lot of point going to Madiera at this time of year if you can't walk - I'd be prepared to go backwards a bit if it means he can enjoy it.
Thank you for such helpful advice. I like the idea of going back to 4mg for a few days. He was great on 4mg and also 3.5mg so it makes perfect sense to do as you suggest. Though I know he’ll resist as he’s so desperate to keep going down. Why are some men so bloomin stubborn?!
Just don't go there!!!! What good is it if he can't live decently on a lower dose? Surely he sees that?
Comfort him with the fact that 3.5 and even 4mg are low enough to prod the adrenal function back into business, just more gently and actually more safely. It isn't the PMR holding him up now, it is adrenals and he MUST not simply continue to taper at the same rate whatever he feels like as that contributes to the adrenal insufficiency state and if he were to experience an emergency situation it could trigger an adrenal crisis and that COULD result in a blue light trip to hospital and being extremely unwell.
It is all about achieving a balance. And it isn't easy.
Thank you!! I’ll pass your advice and explanation on and keep my fingers crossed!
My first thought is he’s unwell and you won’t see the wood for the trees until he’s over that, especially if it’s Covid. Testing can take a few days to come up positive if it does at all.
That fatigue with nothing in the tank on a good day comes with low cortisol. If it is that then upping the dose may be needed to cover the holiday. Be aware though that every time the dose is increased, there is the potential that the adrenals will shut down a bit again, so it isn’t something I’d do regularly. Everyone is different so we can’t say how he will respond. When I went away, I adjusted the holiday to fit the low cortisol and not the other way round; a bit of a bore but any function was hard fought so I wasn’t about to risk it. I did have to do an extra 2mg for a day when I had a bit of a crisis after the journey. I then did virtually nothing for a feed days.
Thanks for your input SnazzyD. He seems a bit better today so will see how things go in the next few days. I’ll try and persuade him it might be better to increase a little so he can enjoy the holiday.
This is my first response on this amazing site, which has given me so much information and insight into PMR. I am almost 77, and was diagnosed with PMR in 2022. At present I am in Madeira, (and have been for the last 10 weeks] returning home to North East England on March 3rd. In early January I tripped on the awful, uneven walkways here,and suffered cuts and bruises which needed treatment at the local hospital. Consequently , and after 3 weeks when my injuries had healed, I had a flare up of the PMR, not even being able to lift a cup of tea! I've upped the Pred to a level that has given me relief. Fortunately the sunshine here has helped me so much, that each morning I can take a gentle stroll and enjoy a coffee in the sunshine, then take a rest in the afternoon. This week we enjoyed a 6 mile levada walk, getting a bus to the start and then walking on the flat. The sunshine, the amazing views certainly lift the spirit. Enjoy Madeira, relax, even if it is just for the weather, away from the damp dreary winter in England.
Hi silversewer, thank you so much for your reply. I’m so sorry you had a fall which caused your pmr to flare. Not what you need on holiday. But it’s lovely to hear you were able to manage a 6 mile levada walk. I’m hoping my partner will be able to enjoy some short levada walks too. Though I might have to try and convince him to up the Pred a little in order to be able to really enjoy our break. It’s funny you’re returning on 3rd as we fly out. And that your home is the North East - we’re just outside York! Enjoy your last few days and thanks again for your input x
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