Flare or adrenal crisis?

[Alithia]

This forum is invaluable and I would really appreciate some advice as I'm confused as to how to proceed. Diagnosed by rheumatologist last October after months of pain & stiffness .. hips so stiff had difficulty sitting/standing up .. couldn't raise right arm .. feeling ill. However GP wasn't convinced it was PMR as bloods were "unremarkable". Anyway consultant started me on 15mgs pred which had a dramatic effect. Felt great .. like I'd got my life back! Embarked on tapering schedule. Had some twinges in right shoulder & hip as I dropped below 8mgs and stiff lower back and increasing migraines but carried on regardless. (I'm really keen to get off the steroids as I'm a bit freaked out by possible side effects and I have niggling doubts about diagnosis .. I suppose the GPs doubt has got in my head and I do have a history of osteoarthritis in neck/spine). Anyway a week ago I crashed. Felt dreadfully fatigued and really achy including stiffness in hands. GP (different one in practice) recommended I go back to 10mg and stay there for a month or 6 weeks and then start tapering again. Initially I went back up to 8 then started 10 two days ago. Feeling a bit weird. Still fatigued and aches not completely resolved. Am now wondering whether this is an adrenal thing rather than a true flare. Tempted to try dropping dose back to say 7mg but don't want to end up yo-yoing and in a mess. Would welcome any advice.

[DorsetLady PMRGCAuk volunteer]

Sounds like a bit of both - and if it’s a flare then you need to get that back under control first - and reducing won’t do that.

This link contains advice in doing that - which you may have been able to do yourself had you increased as GP suggested -but now you’ll probably need to go up to around 12 or 13mg - and then follow usual procedure for dropping back down -

healthunlocked.com/pmrgcauk...

This link contains info on adrenals - which will come into play - and to help them nudge into working again you need a gentle taper - and patience-

healthunlocked.com/pmrgcauk...

[Alithia in reply to DorsetLady]

Thank you for replying so promptly. The information in the links is really helpful. I'll stick at 10 mg and hope things improve. Not sleeping well which doesn't help matters and keep waking in a sweat. Feeling jittery. Effects of upping the dose? I had reduced down to 4mg before crashing.

[DorsetLady PMRGCAuk volunteer in reply to Alithia]

More likely too low a dose -and it will take time to settle - as PMRpro has said your PMR is still active, so keen as you may be to reduce Pred -you need as much Pred as you need. Can’t get around that unfortunately.

[PMRpro Ambassador]

You are looking at things the wrong way - pred isn't a cure, it is a management strategy, and PMR isn't a short term illness, it is a chronic autoimmune illness but it does usually go into remission at some point but it lasts years, not weeks or months.

What you describe sounds very PMR-ish, it is definitely a pred-responsive myalgia, your response to the pred shows that very clearly, and your GP is wrong - up to about 1 in 5 patients have "unremarkable" bloods and while they may not be "outside normal range" they may well be raised for YOU. The normal range is the range of levels seen in 95% of a large population of apparently healthy people - and 5% of the healthy people are outside that. It isn't a range that applies to an individual.

What you have experienced is probably a bit of both - your adrenal function was sleeping after long enough above 10mg to suppress cortisol production and didn't have enough time to wake up, hence you felt shaky, but you had also gone too low to manage your inflammation. You are looking for the lowest effective dose - the lowest dose that provides the same symptom relief as the starting dose did. Your flare started at 8mg so we would suggest adding 5mg to that dose to manage the inflammation - because you are only at 10mg it will take longer. And once you are at 10mg, your body now needs time to recover any adrenal function - you need to go slower for all sorts of reasons. The speed you were reducing the dose I suspect although it was 8mg where you noticed, you passed the dose you needed before that, it just took time for the inflammation to build up again so you felt the effect.

I would say the poor sleep and night sweats is your body telling you the underlying autoimmune disease is active and you are close to the dose you need - it is what happens to me and many others.

[Alithia in reply to PMRpro]

Thank you I really appreciate all your advice.