Following a medication review earlier this year when I was on 7mgs my GP told me I had to reduce by 1 mg a month and that any aches and pains I had now were not PMR. I have done as she said even though I had my doubts about this course of action and I’m now down to 4mg. I told her I still had pain in my hips and lower back and she referred me to MSK team. The physio told me my muscles were weak and gave me exercises to do, which have helped a little, but I’m not certain she had any knowledge of PMR.
My problem is that I am finding it really difficult to walk anywhere, a short walk of ten minutes leaves me exhausted. In fact just walking round the house is tiring. The top of my foot is also painful and hips are painful walking. I’m going on a cruise in a weeks time and frankly I’m dreading it instead of looking forward to it. The thought of packing and then unpacking once on board fills me with horror, and then to have to do it in reverse at the end of the cruise! The ship is bigger than we normally go on so there will be a fair amount of walking on board. The way I feel at the moment I doubt whether I will be getting off at any of the ports either.
There is no way I can cancel it as my husband is really looking forward to it after a few difficult weeks and we would also lose the money.
I am considering upping my pred for the week before and the two weeks of the cruise to try and help me get through it and hopefully enjoy it. I would appreciate your views and advice.
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Decsgran
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It sounds as if you need to up your dose anyway… you’ve obviously gone too low.. and how your GP can say your PMR is gone beggars belief.
You need to be off Pred with no return of symptoms for a few months before anyone can be certain your PMR is gone - but they obviously sell very good crystal balls online nowadays!
Would say your adrenals are also struggling…so you probably do need to up Pred to say 6mg for the next few weeks - and hope that helps enough.
As not sure whether it just adrenals and if you weren’t going away I’d normally suggest treating as as flare - see link -
There was no way the GP could "know" your PMR has gone if you were still on 7mg. You have to get off pred successfully to know that.
I think you are definitely on too low a dose and you need to go back up to what you need. And you are also in the territory where your adrenal function has to reestablish itself - and that takes time, you cannot reduce hell for leather and expect it all to work perfectly, and 1mg per month at this stage is FAR too fast.
Like DL, I would suggest treating it as a flare - and the extra 5mg for the flare protocol should take you nicely through the holiday.
The cruise ship may have mobility scooters for getting around on the ship - well worth asking. If so, you may be able to use it ashore. Where are you going?
I see that everything I thought of has already been mentioned and good advice given, except packing cubes. Where you can sort your packing into categories like undies, cardies, evening wear, night things, toiletries etc . Apart from dresses which you can hang, just keep your packing in the cubes, straight from the laundry . I find them so helpful, to transfer the cubes from drawer to case. Hopefully you will feel miles better on a proper dose of Pred. Find out if you can have a wheelchair to deal with distances if you need to. Take extra Pred with you because of the danger of an Adrenal crisis. I always panic and want to back out of journeys and holidays, but it always ends up being fine and doing me the world of good. I despair at some of the medical advice I learn about on here. I wish doctors would do their homework. I have been incredibly fortunate in my Rheumatologist and am reminded almost daily. I hope you have a lovely restful time.
Have a lovely time away. Hope the change will do you good. I too am getting cold feet re a holiday next week, and 10 minutes is about my maximum for waking atm. But the thought of being by the sea is winning!
Thank you for all the advice. I am going to treat as a flare and add 5mgs. Fortunately I did build up a small stash of 5 and 2.5 pills as GP has take them both off repeat prescription. I did have a blood test and ESR level was OK - one of her reasons to say I’m cured! I tried to tell her that the steroids would have reduced it but she wouldn’t have it. In fact she talked at me not to me - over the phone of course. I’ve not had a face to face appointment since before I was diagnosed and before Covid!
I have been thinking about packing cubes but they seem to be made for modern suitcases and as ours are the old fashioned sort I’m not sure they would fit. I might send for some from Amazon as I can always send them back if they don’t.
Will I need to taper back down after 3 weeks on higher dose or can I just drop back to say 5mgs?
Regarding GP advice. I had planned to taper from 7.5 to 7.0. But GP without consultation only prescribed for 6.5 i.e. she had decided I was not moving fast enough. I had just had a close bereavement and was travelling with my family to have 4days in Iceland. I was just thoroughly annoyed by the disrespect at leaving the patient out of the equation. Wrote a factual reasoned covering letter stating I had researched, found 1)2) 3).etc That whilst I respected that she was trying to adhere to the medical model this did not apply in this case because 1)2)3)etc
Was sure she had the best of reasons but one size did not apply to everyone and that my stress levels were raised as a result of my concerns about medication and I was delaying the taper until I returned from holiday and was able to sort it. Would maintain 7.5 until that point.
I copied and enclosed Kings College Hospital NHS FoundationTrust patient leaflet Adrenal Insufficiency-How to stay safe on steriods. Ref: kch.nhs.uk and made appropriate direct references to it in my letter.
I find GPs dismiss that NICE recommends referring patients to pmagca as a voluntary patient support group and also that citing pmrgca as an information resource is discounted as medically unreliable. However the pmrgca recommendations are well covered by the King's College leaflet. And it is more difficult for doctors to ignore given it is a nhs source but less doctrinal than the basic NHS guidelines.
I came back from holiday to a phone call from doctor, which amounted to an OK we will do it your way.
For my cruises I definitely had no qualms about taking how much ever I needed, I upped it starting a day or 2 before and throughout any vacations and trips. I didn't even think twice, and I am on MUCH higher doses. Enjoy your trip!!
You are at a crucial time when your adrenals need to start working on their own and everyone is different but it will take some time. It took me about 6 years to reduce to 0.50 mg from 7mg and even then I had to up the dose once in a while even when my tests came back normal. You are during a period where you have to reduce slowly, maybe even divide the dose (morning and night) and keep an eye on how you feel. If the pain comes back don't allow the inflammation to get worse, increase and decrease as you need. At this point in time, reducing by 1mg at a time is crazy, in my opinion. I was only able to reduce by 0.25 mg beyond 7 mg. Be careful with the painful foot, I ignored mine for about 4 months when I was on 3.5 mg, until it got so swollen that only a cortisone shot helped and had to increase the Pred to 5 mg. Don't ignore any pain, it will only get worse. All the advice on this forum is excellent, you won't get this type of advice from your doctor. Have fun on the trip!
Bit swings and roundabouts splitting the dose at this stage. Unless you wait until midnight to take the evening dose, there may still be some present in the blood at midnight and it is a low level at midnight that trigger the production of cortisol next morning.
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