Flare timescale

[Body_bonkers]

Think I’ve been battling PMR flare and adrenal insufficiency for last four months. Felt the best so far on 7mg steroids but flared at 6mg with more pain and stiffness than previous flares. I increased to 7mg, added 5mg for fortnight then came back to 8mg. Whilst most of the pain and stiffness resolved, I did not quite feel the same as before so have stayed on 8mg for two months to see what happens but feel the same, Is this long enough for flare symptoms to manifest or should I stay on 8mg for longer ?

My gut feeling is there should be less pain but not sure if struggling adrenal glands cause this too. My head, neck, chest and back seem most affected and this usually happens from sleeping long periods in same position due to stiffness turning in bed. I’ve gotten stiffer from multiple steroid increases in the past so that is on my mind too. My stress response feels normal again and stopped shivering etc. so feel my adrenal glands are getting enough for now.

[piglette]

Flairs and adrenal problems are different with different types of ‘pain’. A flair normally happens after a week or two of reducing your dose, if it happens virtually immediately on reduction it is probably a reaction to the steroid reduction and should go away after two or three days. Adrenal problems may happen when your adrenal glands are having to ‘wake up’ at around 7mg of steroids or lower. They consist of such things as the deathly fatigue, feeling generally achy, weight loss and feeling sick. I just got the deathly fatigue which turned me into a zombie. You should not reduce if either happens, but ideally only increase if it is steroid reduction problems. I did increase with the adrenal problems by 1mg as I was virtually comotose!

[Body_bonkers in reply to piglette]

Thanks Piglette. Feel confident it was a flare rather than steroid withdrawal - as you said, pain started fortnight after reducing but got progressively worse so by week five I ‘d really stiffened up hip and shoulder pain etc. My instinct is to stay at 8mg another month and review again.

The pain feels sharper this time however but suspect this might just be because all my senses have became so heightened - really sensitive to sound, smell, light and touch. I do feel achey, off my food and whilst there is some fatigue, I’m not completely non operational at the moment although the brain often says no ! My thyroid was recently checked so shouldn’t be feeling cold. At 6mg I would cry at a simplest thing (definitely not me) and felt like I was dying to be honest but have bounced back on higher dose. I’ll reduce at slower rate second time round to see if that makes a difference but expect tough times ahead

[piglette in reply to Body_bonkers]

Steroids are miraculous and really help when you increase the dose. Pity that they have side effects that seem to frighten some doctors.

[bde987 in reply to piglette]

Hi Piglette, that was so helpful to read. I have dropped to 7mgs and the overwhelming tiredness that came with it has been horrendous. I keep dropping to sleep through the day and feel sick with tiredness. Did you just remain on the 7mg till your symptoms resolved? I have been thinking of going back to 8 mgs

[piglette in reply to bde987]

I went up 1mg then just stayed on the same dose for several months. I was on 6mg though. I had trouble lifting a spoon to my mouth!

[DorsetLady PMRGCAuk volunteer]

I think you’ve sussed out what’s what-but a couple of links on flares and and all things adrenals -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Body_bonkers in reply to DorsetLady]

Thank you DL - feeling reassured

[PMRpro Ambassador]

Yes - I agree you have got your head around the situation. We're always here to listen!