Advice please

Have slowly reduced over the past year from 20mg to 5.5. It's been almost a fortnight since the last .5 reduction and I'm finding muscle soreness and bones on fire have started up again. I suppose it's not enough pred to control the PMR but my adrenal glands should be kicking in now so should I tough it out or increase my dosage?

[Soraya_PMR]

No don’t tough it out. It sounds as if you have overshot your reduction, and inflammation will continue to build. No guarantees re adrenals kicking back in, or being reliable and cortisol not as anti inflammatory as pred.

It’s almost exactly the same as I recently experienced trying to get to 5mg, after 12 days it came creeping back. I did a quick increase to 10,9,8,7,6 then stuck at 6 for a while before trying again.

[Hidden in reply to Soraya_PMR]

Thanks for that will increase then.

[Hidden]

It's no good ignoring those increasing pains. I have tried 6 to 5mg 4 times now with no luck and I am on a steroid sparer/dmard. My rhuemy says a lot of people struggle at 5mg...forget how he awkwardly worded it but he basically said because I was on the fat side I might struggle more. 😂😂😂 I don't think my body is good at getting the full whack out if pred. I am happy staying at 6mg.

[Hidden in reply to Hidden]

What a cheek ppd, although I am heavier than I want to be (aren't we all?) I am not considered overweight so that's not the reason. Obviously then I need to increase for a bit then have another go. Last time I saw my doctor he said I really aught to decrease my dose a bit quicker as 'we don't want to be on steroids longer than necessary do we'.

[Soraya_PMR in reply to Hidden]

We? We? He’s on steroids as well is he?

They can be so patronising can’t they!

‘We’ didn’t want PMR either actually, and ‘we’ would prefer not to be on steroids at all, but as ‘we’ don’t want to flare and go up to even higher levels, ‘we’ will reduce as fast as the PMR will let us.

[Hidden in reply to Soraya_PMR]

😂😂😂

[Purplecrow in reply to Soraya_PMR]

Well said👏🏽👏🏽‼️

[Purplecrow in reply to Hidden]

Doncha love the skinny -boy docs who think us fat old ladies dont know how big we are⁉️ Sorry, just one of my pet peeves🤓 ..carry on..........

[Hidden in reply to Purplecrow]

😂😂😂 I think that's why I can laugh about it. It's the bubble they are in.

[PMRpro Ambassador]

Adrenal glands have nothing to do with managing the PMR symptoms. All that will happen if you try to tough it out is that you will have a real flare and end up requiring a higher dose of pred. Your target dose has been reached (and overshot): the lowest dose that manages the symptoms as well as the starting dose did. It appears it may be 6mg if you are lucky although if you have been reducing a bit too fast it may be a bit higher.

Go back as Soraya suggests, don't go back to 5.5mg but wait a month or two at 6mg to be sure it is still enough before tentatively trying again.

And yes - OH just said "You can reduce your steroids if you like, I'm staying on mine!" On the rare occasions a doctor develops PMR/GCA they seem to have a road to Damascus experience, discovering that the odd mg or two more of pred is neither here nor there in the great scheme of things. He wouldn't be my GP for long unless he stopped patronising me.

[Soraya_PMR in reply to PMRpro]

"You can reduce your steroids if you like, I'm staying on mine!"

😂😂😂😂 perfect! That’s made me proper giggle!

[Purplecrow in reply to PMRpro]

Again!! Well said‼️👏🏽👏🏽‼️

[Hidden in reply to Purplecrow]

I wish I had thought of that at the time, though I did tell him you shouldn't reduce by more than 10%. Where do you get all this he said. From the previous rhuemy I saw last time I said!

[Hidden in reply to PMRpro]

Thanks for that, I somehow thought that once the Adrenal glands kicked in they would take over from pred, oh well.

[PMRpro Ambassador in reply to Hidden]

If your unaffected adrenal glands didn't prevent PMR in the first place - how can they replace the pred you need to manage the inflammation?

[Soraya_PMR in reply to PMRpro]

THAT is an excellent way to think of it.

[Thelmarina in reply to PMRpro]

Love OH 👍

[piglette]

Total waste of time trying to tough it out, you need to hit the PMR on the head or it will just give you a bad time.