Increasing dose, but how much?: Hi. 68 year old... - PMRGCAuk

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Increasing dose, but how much?

Utgorn profile image
15 Replies

Hi.

68 year old male, diagnosed November 2019. I've reduced to 2.5mg per day and have been stuck on it for 6 months. I think I need to increase the dose a bit to stop my wife, justifiably, creeping up behind me with an axe.

I'm definately getting worse with increased shoulder, upper arm, base of thumbs and calf pains making me no fun to live with.

My questions are: should I add 5mgs to my current dose and come down rapidly,like .5 per day? Or is that too much and should I try 5mgs a day fror a while first?

I take the pred with breakfast, half hour after Lansoprazole and 2 hours before Evacal.

I suppose my main concern is undoing any good work I might have done so far to get my adrenals working, but a short term increase should be ok I hope?

Thanks in advance for all the good advice and reassurance I'm after.

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Utgorn
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15 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

This link contains usual advice for dealing with a flare -

healthunlocked.com/pmrgcauk...

Once you have things under control you should be able to drop back down - but to 3mg rather than 2.5mg - as that's the dose that is causing issues - so obviously not quite enough.

As you are on the higher dose for a short period it shouldn't affect the ability to reduce, nor should it adversely affect adrenals...

on which subject you might like to have a look at this - if you haven't already-

healthunlocked.com/pmrgcauk...

Utgorn profile image
Utgorn in reply to DorsetLady

Thanks, Dorset Lady.That's very helpful.

I'm pretty sure I've read both the links in the past while trawling through the FAQs, but it's easy to get confused with all the information.

Still a bit unsure whether to go up to 7.5 or just 5 and stay there for 7 days. Try it and see, I suppose.

Thanks again

PMRpro profile image
PMRproAmbassador in reply to Utgorn

Do it properly - add 5mg and take 7,5 first, No point pussy-footing about!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Utgorn

Agree with PMRpro…..

PMRpro profile image
PMRproAmbassador

DL has explained the flare technique - but whatever you do, NOT back to 2,5 because it obviously isn't quite enough. And don't be convinced that 3mg is enough if you start to ache again!

Prof Dasgupta told us in a webinar during early Covid that he often kept patients in 2-3mg long term as it reduced the risk of relapses. I think it is possible to get lower and then stick but if it is good enough for him - it's good enough for me.

Utgorn profile image
Utgorn in reply to PMRpro

Thanks , PMRpro

As you can see I've replied to Dorset Lady. Just need to decide how much to increase now.

Think I'll go to 5 for a while. 7.5 seems too drastic .

This site is great!

PMRpro profile image
PMRproAmbassador in reply to Utgorn

Do it properly - add 5mg and take 7,5 first, No point pussy-footing about!

You need enough for it to clear out the stored up inflammation and quickly. 5mg might work but it will take a lot longer - and it might not work. If it isn't enough you are wasting time and exposure to pred.

Utgorn profile image
Utgorn in reply to PMRpro

Ah, ok. That sounds the wiser move.Thank you again for your help!

harpsichor profile image
harpsichor in reply to PMRpro

I am in a similar position, finding that 2.5mg is too low, with shoulder/arm pain and increasing stiffness. So should I take one dose of 7.5mg for one day and then 5mg for following days? And how long should I stay on 5mg? When should I start to decrease?

PMRpro profile image
PMRproAmbassador in reply to harpsichor

No - the explanations for flare management are to add 5mg to the dose at which you are flaring, take that for a week, more if necessary and then drop back to the desired slightly higher dose. So in your case 7.5mg for a week and then go back to 3mg if you were OK at that previously.

See here for more details:

healthunlocked.com/pmrgcauk...

harpsichor profile image
harpsichor in reply to PMRpro

Thank you so much for responding so quickly, and thank you for all the work you do for this website.

agingfeminist profile image
agingfeminist in reply to PMRpro

if you stay on 2 or 3 mg long-term doesn't that have implications for adrenal function?

PMRpro profile image
PMRproAmbassador in reply to agingfeminist

Not really - the effect on adrenal function has already happened and actually for many adrenal function returns by 2-3mg because by then you do need some top-up. There are others where adrenal function is still ropey at 3mg and OK at 1.5 - everyone is different, I think he probably means he tries a lower dose but it isn't enough. And to be honest, the stress of the expectation you will reduce is enough to cause problems.

agingfeminist profile image
agingfeminist in reply to PMRpro

Sorry, I meant...perhaps it will inhibit return of adrenal function(not cause it). I suppose it's always a trade off...and in the end we are always victim to the whims of PMR

PMRpro profile image
PMRproAmbassador in reply to agingfeminist

Yes I realised that is what you meant. I'd rather wait on adrenal function than struggle with PMR symptoms. And as I say, for some it doesn't prevent it, just the adrenals will produce less cortisol since it is a top-up to the amount of pred present.

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