Posted , 8 users are following.
I'm new to PMR and have taken 20 mg prednisolone for a week, with pain and stiffness from dawn to mid-afternoon. A few days at 25 mg has not helped. Consequently I am considering a split dose or moving to a single 2am dose.
How worried should I be about long-term adrenal suppression? Won't patient tapering of the dose will eventually restore my adrenal function come what may?
1 like, 41 replies
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lilian05079 Joydeck
Posted
If you taper slowly to come off preds you will stimulate your adrenals..but once completely off the preds you may experience withdrawal symptoms, this is not experienced by everyone withdrawing from preds, but i did experience withdrawals....i stopped taking preds 10 months ago. My adrenals are just about getting back to normal i can feel it. I am having tests to see if my adrenals and cortisol are at a normal level now. However, it does take longer for your adrenals to recover in some cases due to how long on preds and how high the dose..as far as GCA is concerned coming off preds is more involved......it can take up to 2 years for adrenals to function normally......
lilian05079 Joydeck
Posted
If you taper slowly to come off preds you will stimulate your adrenals..but once completely off the preds you may experience withdrawal symptoms, this is not experienced by everyone withdrawing from preds, but i did experience withdrawals....i stopped taking preds 10 months ago. My adrenals are just about getting back to normal i can feel it. I am having tests to see if my adrenals and cortisol are at a normal level now. However, it does take longer for your adrenals to recover in some cases due to how long on preds and how high the dose..as far as GCA is concerned coming off preds is more involved......it can take up to 2 years for adrenals to function normally......my very best wishes to you Joydeck if you are considering tapering off preds.....
Joydeck lilian05079
Posted
lilian05079 Joydeck
Posted
Hi Joydeck
Ah you've only been taking preds for two weeks i wasn't aware if that....but you did question about tapering and adrenals returning to normal..i hope i helped you with that...but i stress it was my own individual experience...my very best wishes to you Joydeck...
Joydeck lilian05079
Posted
I was just worried that taking 25 mg prednisolone in the afternoon or evening, or divided doses, may do irreversible damage to my adrenal glands.
EileenH Joydeck
Posted
It may be that they do not resume at the same level as they were before - but it is very rare and may well have happened anyway. Adrenal function falls away as we age anyway, one cause of poor adrenal function is autoimmune, once you have one autoimmune condition the chances of developing another are higher (or does the same a/i condition spread to embrace more aspects?).
Taking pred is analagous to your central heating boiler - when the temperature is above where the thermostat is set it produces no more heat. When the corticosteroid level in the body is above "normal", the adrenals are signalled to produce no more cortisol. When the temperature eventually falls and you decide you need more heat, sometimes the boiler doesn't function straight away and needs some TLC, sometimes a part needs to be replaced. There are several reasons why the adrenals don't start to produce cortisol as they should - long term pred is only one and some of them involve other organs (pituitary or hypothalamus for example) which were not affected by the prescence of pred, just as the temperature didn't affect the electricity supply to the boiler or the plastic covering of wiring perishing.
Guest EileenH
Posted
Hello Eileen
still on 4 to 5mgs enteric coated Pred which I take with b/fast 8am. As mentioned before happy to tolerate some arm pain etc though it does last all day. On reading above I'm wondering if I take at 11pm with a lump of cheese whether it will kick in at a better time re adrenals.? I''m guessing no harm in experimenting. Can enteric coated pred cause bleeding in the intestines if not taken with a 'meal'?
Would you know if I can take a 1/2 dose of ordinary pred with the enteric one?
Hope you are keeping well and stocked up on chilli choc x
EileenH Guest
Posted
When I was on enteric coated pred I took it with a glass of water. All that will happen with a mix of plain and enteric coated is that the plain will be absorbed quickly, within about an hour, forming a quick spike of the level in the blood which then falls slowly while the enteric coated will take about 5 hours or so to get to the peak level and forms a long slow rise and fall.
I don't quite understand your question about the adrenals. Theoretically the best time to take pred to avoid adrenal suppression is early morning, as you are doing.
Guest EileenH
Posted
Thanks Eileen.
I didn't quite understand whether getting a 'peak' at say 4am, if I take enteric coated tab at 11pm, would result in less discomfort during the day?
I am guessing this timing won't lead to adrenal suppression especially as only 5mgs? When I go for 4.5mgs I could take the 0.5 with b/fast then.
Thanks for your endless time Eileen x
EileenH Guest
Posted
It is worth trying - if it doesn't work, it doesn't work.
BillyP Joydeck
Posted
For me , however, I have been on pred long enough to mostly recognize symptoms......
I can tell if it feels like a flare coming up, simply .for me , it always feels as though I am running a temperature
(sort of a clammy feeling) my doc may say we will have a blood test.......I say, I can tell you the result right now.
So mostly these days I self medicate.........no more than 4 days at double my daily dose of 5mg...(always taken with brekky, never at any other time).. then straight back to the usual morning dose..........
For reasons that escape me I have upped the dose to 25mg for 4 days , then back to the usual dose with no withdrawal problems.............
But recently things went pearshape........so with a blood test I was put on 20mg for four weeks.....15mg for four weeks........10 mg for four weeks...........that meant a very slow reduction from there on to get back to my normal dose,,,(for me this may take a year to drop from 10mg to 5mg)
A sign of too quick ,for me is mainly dull headaches.............
So ...what I am saying is..... I mostly medicate by how I feel......not by complicated tests...............
5mg is my aim.........that will do me for ever and a day (I seem to recall saying this before..................)
Its a shame that no two people have the same symptoms or require the exact recovery methods.........
Joydeck BillyP
Posted
I too feel as though I am running a temperature when PMR returns - a feeling of mild fuzziness in the head.