Could this be my adrenals struggling.

[Pris80]

Hi everyone, I've been reducing my daily dose of prednisolone by half a mg each month from 8 to now 5. Its gone reasonable well so far, but I do have trouble staying awake when I'm sitting in my armchair for any length of time. Having been on steroids for 9 years, and previously never managed to get lower than 7 1/2 could that be just my adrenals waking up? Or not..... I'm not in any more pain than normal with my knee and shoulders arthritis...it's just the tiredness. I have all good intentions about what I'm going to do each day, but the day just slides away from me!

[Charlie1boy]

Throughout my nearly 8 years on steroids, I took a siesta for about an hour every day. That was totally due to tiredness, and I know I am not alone.

My philosophy was, and still is, just give in to it!

[Pris80 in reply to Charlie1boy]

Thank you Charlie oyster, that's a great philosophy 👍

[Pris80 in reply to Charlie1boy]

Sorry, that darned predictive text!

[Hidden in reply to Charlie1boy]

My late aunt had PMR. She always went to bed for a couple of hours in the afternoon if she was not working.

[DorsetLady PMRGCAuk volunteer]

Very likely adrenals… so maybe

a. stick at 5mg for a month or so to give them time to catch up, and then

b. slow the taper down even more -to 0.5mg ever 2 months.

See this re adrenals, and obviously if you get anything more serious than fatigue [which can be bad enough itself, but manageable] then seek medical advice -

healthunlocked.com/pmrgcauk...

[Pris80 in reply to DorsetLady]

Thank-you, good advice.

[PMRpro Ambassador]

I'd say probably adrenals. I'd also say slow down - 1/2mg every 2 months is plenty now and more likely to succeed/

[Pris80 in reply to PMRpro]

Thank you, I'll take your advice 😊

[Oldies60]

I also get very tired after taking my prednisone. My rheumatologist looked at me like I had two heads when I told her that and the insomnia issue. I definitely need a nap every day.

[PMRpro Ambassador in reply to Oldies60]

Your rheumy needs to get her info up to date!!!!

[Oldies60 in reply to PMRpro]

I thought she was so good after my first visit. My appt on Monday was a little disappointing as she brushed off other concerns I had.

[PMRpro Ambassador in reply to Oldies60]

They would learn so much if they LISTENED to their patients, didn't dismiss anything we say as illinformed rubbish, and did some reading. Pred does NOT always give you wings and make you feel better, sometimes it makes you feel really quite rubbish ...

[Hidden in reply to PMRpro]

I concede to this. In the beginning I could achieve more than I have all year. Now I feel horrible, but we did have a bad journey home yesterday 😕

[tangocharlie in reply to PMRpro]

.... as does the PMR if you don't get enough Pred. I've been mocked more than once for daring to raise an issue 'I'd read on a forum' and I bit their head off, said I'd learned more on there than I had done from any doctor and they ought to go have a good read themselves. I still say it often to Dr Mackie when what I and others have been saying for years turns out to be something the rheumatologists are now looking at eg the two year myth, flares, blood sugar spikes, weight gain, adreanl problems, how frozen shoulders can morph into PMR, that there is a spectrum ... . and more including now spinal fractures. I've learned about all these things from here and personal experience

[PMRpro Ambassador in reply to tangocharlie]

I do have a little smile to myself every so often when they start singing about something I suggested might be the case 10 years ago ...

[tangocharlie in reply to PMRpro]

😆😆I hope you get acknowledged when they get their Knighthoods. Why does it take 10 years though for them to believe us? As for smiling quietly to yourself, I'm bloomin banging my fists on the table every time I get fed bullsh*t! 1000 patients telling you something counts for nothing whereas one flawed randomised study done on a dozen people20 years ago is the Gold standard. It's a wonder I havent got high blood pressure the amount of seething I do daily 😆😆. There'll be a letter going off to Wes Streeting .....

[tangocharlie in reply to PMRpro]

And I should know as you do that the secret to changing minds is to make them think it was their idea all along .... And on a similar note, in words attributed to Ghandi, first they ignore you then they laugh at you then they fight you and then you win

[PMRpro Ambassador in reply to tangocharlie]

I'll whisper this - it's only like managing partners ...