what should you up the pred to?: Hi everyone---Im... - PMRGCAuk

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what should you up the pred to?

piggylovesgolf profile image
17 Replies

Hi everyone---Im back again. Hubby has done pretty well recently and is currently down to 3mg pred and due to reduce again in a weeks time. Last blood test was excellent per the doc and showed no trace of inflammation. Unfortunately he is currently not feeling well, very tired and has pains around his middle and his back. Not certain if it is the PMR but have suggested he upped the pred for a few days to see if it clears. Is there a number you should go up to on this sort of temporary basis? I suggested 5 for a couple of days to see if he goes better.

Thanks everyone

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piggylovesgolf
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17 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi, have a look at this post if you’re not sure if relapse or not -healthunlocked.com/pmrgcauk...

..and this includes info if it is a flare - healthunlocked.com/pmrgcauk...

piggylovesgolf profile image
piggylovesgolf in reply to DorsetLady

Many thanks DL. That info and the chart is excellent and gives me the info I wanted 👍

PMRpro profile image
PMRproAmbassador

How long has he been on pred? It sounds as if it could be adrenal insufficiency - he's reduced the oral pred faster than the adrenal function has been able to keep up with. The only way to stimulate the adrenal function to get back to normal is to remain at a pred dose that is low enough to do so but not so low he can't function. He is also at risk of developing an adrenal crisis if he were to be subjected to an emergency situation.

Was he OK at 4mg? That should be low enough to stimulate adrenal function. But he shouldn't taper again just yet - he'll just feel worse. And going up too far would just mean he has to go through it all again. It is a tricky balancing act at this stage.

piggylovesgolf profile image
piggylovesgolf in reply to PMRpro

Many thanks. He seemed OK at the 3 but this week he has been "off". May be too much activity----went to london last weeked to see daughter (we live in lancashire) and has been cycling so may have overdone it

PMRpro profile image
PMRproAmbassador in reply to piggylovesgolf

Sounds about right!!!!

SheffieldJane profile image
SheffieldJane

The pains around his middle could well be another sign of adrenal insufficiency. The trouble is, putting up the dose just tends to postpone the inevitable. If he requests a Synacthen test he would learn whether his adrenals are capable of working on their own. There is no hurry to reduce at this stage. It is a harmless and sometimes very necessary dose. Perhaps a break from the tapering would help and plenty of rest.

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

"If he requests a Synacthen test he would learn whether his adrenals are capable of working on their own" - but not if they are actually DOING so!

piggylovesgolf profile image
piggylovesgolf in reply to PMRpro

I'll get him to mention this next time he chats to the jolly doc.

Rugger profile image
Rugger in reply to piggylovesgolf

He could ask his jolly doc for a 9am cortisol blood test which gives a baseline figure of adrenal activity. I'm having one for my Rheumatologist in a couple of weeks' time. (For the test, you have to not have taken pred for 24 hours to show what the adrenals can do without it.)

PMRpro profile image
PMRproAmbassador in reply to Rugger

Yes - I meant to mention that and forgot

piggylovesgolf profile image
piggylovesgolf in reply to SheffieldJane

Thank you SJ. I think, from reading these posts over the last year or so, that when he got down to 5mg this time he should have reduced by 1/2 mg and not 1. I do think his GP is very good and cares for him well but I can tell he likes to get patients off pred as soon as is possible but albeit OK. People on this site all seem to say 10% or 1/2 mg when you get down to 5. He did ask GP if he should stay on a low dose more or less permanently (following info I passed on from here) but GP said he wasn't in favour of long term permanent use of pred because of side effects. However, it seems to me, from what other people have said, that there are little or no side effects if you get to 5 or below, which you seem to have just confirmed above.Thanks to you all for your help and info.

Best regards

Irene

PMRpro profile image
PMRproAmbassador in reply to piggylovesgolf

10% should apply from way above 5mg - from 20mg is often necesssary but the closer you get to 10mg, the more necessary it becomes.

piglette profile image
piglette

At that level of pred I felt absolutely whacked caused by the adrenal glands. Slowly the adrenals woke up in my case, although I am not one hundred per cent quite yet.

piggylovesgolf profile image
piggylovesgolf in reply to piglette

Thanks P. He's currently in bed asleep!!! He is whacked and has been all week. He's just upped the pred so am hoping that sorts him out for a while.

piglette profile image
piglette in reply to piggylovesgolf

I found the trouble putting up the pred meant that you then let the adrenals off the hook so they could sleep a bit more. You then had to go through the whole process again when you reduced. I must admit I did go up one mg as I was having trouble raising my hand to scratch my nose. I hung on at that dose, I think 4mg or 5mg until it really improved.

piggylovesgolf profile image
piggylovesgolf in reply to piglette

I feel your pain!!!!(re the nose scratching). Hubby is not shaving. I have to sit and look at this grisly old man in the mornings------he's not that old and is usually very sprightly--- but --not shaving ggrrrrhhh

piglette profile image
piglette in reply to piggylovesgolf

Tell him I really sympathise, but it will get better.

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