Fatigue which I did not have before

[Artwatercolour]

I have got down to 13.5 dropped from 17.5 (see my previous notes) BUT all of a sudden feel horrible no energy at all. Still have some pain upon waking but pretty much disappears. But if I walk/stand for 3 hours pain in hip. My question …was the jump from 17.5 to 13.5 too much for my body? I have never felt this bad - ever

[DorsetLady PMRGCAuk volunteer]

Certainly too big a reduction….was that advised by Rheumy - seems a funny step. I know she has questioned PMR, but 17.5mg to 15mg would have been a better move…although that’s not always achievable.

..and a drop like that would actually confirm it may well be PMR rather than OA.

Do you need to be walking/standing for 3 hours at a time? ..work?

I might be inclined to go back to 17.5mg for week or more, see if that helps, then reduce more slowly, but you also need to advise Rheumy what happened.

[Artwatercolour in reply to DorsetLady]

Thanks I will do that

[Artwatercolour in reply to Artwatercolour]

Forgot to say - I was just saying the 3 hours happens when I do errands and groceries on Thursday s

[DorsetLady PMRGCAuk volunteer in reply to Artwatercolour]

Ok..that’s more understandable then,,think most would say that with either PMR or OA.

But would still say too big a step down in one go..

[PMRpro Ambassador]

If it was all at once - then indubitably too fast! No step down should be more than 10% of the current dose. And it is a really strange amount!

I can walk/stand for about an hour without discomfort - it was less. I also get hip and low back pain - and it is part of greater trochanteric pain syndrome, formerly called trochanteric bursitis. It can be part of PMR and higher doses of pred do help but at some point the pred dose isn't enough and more targeted treatment is better.

The fatigue bit could be the switch from a higher pred dose that gives you wings to one that doesn't. It isn't something I have ever experienced, just know it happens to some people, doctors seem to think to everyone! That pred energy goes at some point - and even later you develop the fatigue of adrenal insufficiency which can be even worse.

[Artwatercolour in reply to PMRpro]

Not sure what you mean by “even later you develop the fatigue of adrenal insufficiency which can be worse”??? Are you saying as I reduce down that happens?

[PMRpro Ambassador in reply to Artwatercolour]

Adrenal insufficiency fatigue appears as you get well below 10mg and adrenal function must take over from the job done by the exogenous oral pred at higher doses. Above about 7-10mg oral pred the adrenal gland production of cortisol is suppressed as it isn't required for basic functioning. As the pred dose falls, it is required again.

[Artwatercolour in reply to PMRpro]

So does it finally catch up

[SheffieldJane in reply to Artwatercolour]

In most cases our own adrenal function recovers gradually. It’s a wee way off - one step at a time and really pace your activities. Take a nap after lunch etc. you have a significant disease if it is PMR - it sounds like it is.

[Artwatercolour in reply to SheffieldJane]

Yes it is PMR

[PMRpro Ambassador in reply to Artwatercolour]

Adrenal function you mean? In most cases yes, as the pred dose falls the body recognises that and the very complex feedback set-up starts up again. The only thing that encourages it is lack of pred and it takes time to get the settings right. Even after stopping pred altogether it is thought to take a good year to settle down to reliable function. Very occasionally it doesn't but it is relatively rare.

[123-go]

I could never have coped with a shopping trip of 3 hours when I was on your dose of Pred! Twenty minutes was barely possible!The inflammation in your body is very active and has impacted the tendons and tissue around your muscles/joints. Is it it at all possible for you to make shorter trips over several days?

A little story: My back was giving me trouble when I was shopping (pre-pandemic) in the clothing section of a large department store and that feeling of needing to sit down NOW overwhelmed me. I picked up a random item from a clothes rail and took it into the dressing room thinking I would be able to sit down in a cubicle but was dismayed to find there wasn't even a stool. I admitted to the assistant that I needed to sit and she quickly found me a chair checking on me periodically probably to ensure I was still in the land of the living 😏. I sat for a good fifteen minutes and, oh!- the relief and gratitude for the assistant's kindness.

[Artwatercolour in reply to 123-go]

Yes I can relate to your story

[PMRpro Ambassador in reply to 123-go]

One friend of mine said she felt like crawling under the clothes carousels!

[123-go in reply to PMRpro]

I can understand that. If I'd sat on the floor ( I did consider that) I would have needed a couple of burly helpers to stand me up!

[PMRpro Ambassador in reply to 123-go]

The worst hitting a brick wall of fatigue I had was while skiing!! I wasn't even a couple of hundred yards from the chair lift and couldn't even manage to slide across there! There was a bench outside a hut about 30 yards away which I managed to get to and sat there until I felt able to get across to the lift. My own fault - I knew my limits early in the season but felt so good that day I did one last very short run! No ....

[123-go in reply to PMRpro]

Those were the times when we were our own worst enemies but we have become wiser as we've grown older-haven't we??

[PMRpro Ambassador in reply to 123-go]

Um - have we? I don't ski any more though

[123-go in reply to PMRpro]

At least we've retained our sense of humour....mostly.

[PMRpro Ambassador in reply to 123-go]

Bit dark at times - but 'twas ever thus for me, The NHS can be a bad influence there ...

[123-go]

Just replied in a similar vein to PMRpro 😏. Perhaps we should be provided with a badge or card to explain why the floor is our go to place when our weak bodies are letting us down. There was a time when a chair was placed by each counter. Those were the good old days - some might say!

[DorsetLady PMRGCAuk volunteer in reply to 123-go]

When shops appreciated their customers…

[123-go in reply to DorsetLady]

Yes!

[SheffieldJane in reply to 123-go]

Lost children were looked after……