hi. I was diagnosed a year ago and started on Pred at 15mg. Now down to 4.5mg. Felt great on 15! Now seem to have more anxiety and profoundly tired. I work full time in a demanding job that has its own stress peaks. So I am not sure if it’s work or the lower dose that is making me feel like this. I am going to see my GP in a couple of weeks and will ask her. does have anyone have any advice on what questions to ask her. Or what you recommend? I have never felt as low as this before so it’s quite worrying. Many thanks in advance.
PS I second what others have said about this forum. It’s great!
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It sounds like your adrenal gland function is not returning quickly enough yet coupled with the extra cortisol demand required by working. Do have a read of these links from the FAQ’s. They are essential reading for anyone under 10mg.
Sounds very much like your adrenals struggling. This link explains - and a very slow taper, tiny drops in dose, time, and patience are really the only things that will get you through. Normally we suggest resting as much as possible , but that’s not easy when working I appreciate.
Might be worth asking GP for basal cortisol test to see what adrenals are doing..
Many thanks. I will definitely ask for the test. That’s a good suggestion. It’s funny (but not surprising) that I felt so good when I started the pred. Full of beans. And very jolly. And more like “me” Now I guess it’s the “gap” emerging between what I have vs need that has made me feel much lower. I definitely want the old “me” back. When my adrenals start working again are they likely to work at the same rate , or will there always be bit of a gap? Once again thanks for your help. It’s great!
Adrenals can take along time to be back to 100% even after coming off Pred (up to 12 months).
Whilst you are still on Pred, no matter how small a dose - they can still be lazy! Unfortunately it’s not like flicking on a switch - bit like the older long life light bulbs - takes time… 😊But they do get there eventually.
"I am not sure if it’s work or the lower dose that is making me feel like this."
Both probably. And it takes time for them to wake up. To be at 5mg in under a year is quite fast. Which has its advantages in that the glands haven't been suppressed for very long. But they will still take time to adjust. When did you last feel "good" and how did you reduce since then? Smaller steps and longer gaps between reductions is all you can do really - can your job be adjusted at all so the stress is a bit less? PMR comes under disabled legislation and reasonable adjustments to allow you to continue to work are work asking for.
Many thanks to everyone for their advice. Super helpful and reassuring. Going to slow the taper down. Rest more and also have a word with my boss! Hopefully will all help. Cheers all.
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