Tired all the time

[Rose53]

Advice needed please I have had GCA since May 2023 so far I have managed to taper from 40mg prednisone until now taking 1mg I did have a flare at xmas but otherwise okay. The problem is past few days I am just so tired falling asleep all the time again, generally feeling weary again is this normal I have one week left on prednisone, or am I having another flare. I am due a blood test again in October when I should have finished prednisone. Thanks

[DorsetLady PMRGCAuk volunteer]

Hi,

Would say a couple of things, a very fast taper… and please don’t assume just because you intend to finish Prednisolone in October that your GCA has gone… in fact I very much doubt it has. That may account for you feeling as you do.

But secondly it’s just as likely to be your adrenals struggling - they will have gone to sleep on higher doses of Pred, and need nudging back into life when you get down to around 7-8mg of Pred…and that takes time - they don’t just flip back like a light switch. In fact even after finishing Pred they can take up to a year to be back to full function.

This link gives more info- healthunlocked.com/pmrgcauk...

Personally I’d be seeking medical advice.. you probably do need to be on a slightly higher dose to give adrenals time to catch up…

[Rose53 in reply to DorsetLady]

Thankyou spoke to surgery awaiting call from GP

[DorsetLady PMRGCAuk volunteer in reply to Rose53]

Let us know outcome please... and do stress you are concerned that as/if adrenals are struggling you may have a adrenal crisis - not all staff are up to speed on that.

[Rose53 in reply to DorsetLady]

Thankyou, have now spoken to my GP she also explained about the adrenals kicking in also explained why I am so tired still. Any more problems she said to get back in touch again.

[DorsetLady PMRGCAuk volunteer in reply to Rose53]

Good…did she also say stay at 1mg for longer than usual? Many find that amount is adequate at controlling their disease, but zero is a whole different ball game, so just aware of that.

[PMRpro Ambassador in reply to Rose53]

Good for her - unusual to find a GP who "gets" it!

[PMRpro Ambassador]

I agree entirely with DorsetLady. You have been very lucky to get this low so quickly but that was plenty long enough for adrenal function to be compromised and it often takes a lot longer than a few months to restablish itself.

If you feel really unwell, confused, develop diarrhoea or any of the other symptoms listed here

my.clevelandclinic.org/heal...

please get urgent medical advice. Don't wait for the GP overnight or at weekends, call 999 and say you may be having an adrenal crisis. And in the meantime, if you can, take 10mg of pred if you have it - you should always have an emergency stock available but it sounds as if your doctor restricts what you get???

[Aoakleymoore]

I experienced crushing fatigue also. I work full time and that’s where every bit of my energy went. I’ve also gained 50 pounds in the last 18 months. My GP prescribed phentermine for both energy and weight loss and it’s slowly working. I was just diagnosed with carpal tunnel syndrome and will need surgical intervention as well. What a cruddy season in life! I tapered from 60 to .5, now up to 5 as rheumy wanted to see if it helped my hand and wrist pain (maybe a little). I see him again this month.

[AtopicGuy]

If it only started a few days ago, it might just be a routine infection; perhaps a virus? If you've had it before or been vaccinated, the tell-tale symptoms might be very mild. Tiredness can be the body's way of telling us to rest while the immune system rises to the challenge and fights off the bug. Only time will tell.