return of pmr or signs of adrenals waking up?

[Carnivoreyogi]

Hello everyone, I’m reaching out for some perspectives and advice. I was diagnosed with PMR 2 years ago and GCA 1 year ago. In the past few months I had a serious pneumonia and 1 bout of diverticulitis with a serious bowel infection. In the meantime, I’ve been slowly weaning off prednisone and feeling no return of any of the pmr symptoms. By mid January I was feeling really well. As of January 30th I was on 4mg of pred. A specialist did an ultrasound of my neck vessels and found all my GCA inflamed vessels were back to normal. He said I could stay on track with the tapering. I’ve been tapering 1mg per month.

Recently though I’ve noticed lower back pain, pain along the spine at times, pain in left side of hip (but not typical of pmr pain at all—more muscular/tendon kind of pain) and pain in right side of my neck. These pains seemed like muscle pain from walking/exercising more. But they’ve persisted even as I back off on too much exertion. And I just feel a bit more tired than before. Just feeling generally less well.

Do you think this could be the sneaky return/flare up of pmr (little embers starting to burst into flame again), or could it be the adrenal system trying to adapt to the tapering of the prednisone? The pains are definitely not the same bilateral shoulder and hip pain I’ve had with PMR. I did go back up to 5mg 4 days ago, the last dose I felt great on. But still feeling under the weather.

I’m asking you about this, because my rheumatologist doesn’t listen or give me helpful advice. Thank you very much indeed for any insight, advice, past experiences, you can offer.

[DorsetLady PMRGCAuk volunteer]

Some certainly sounds like adrenals stuttering,[feeling tired and general off kilter]- so maybe ease up on tapering and give them a chance ago catch their breath… a slow taper is the only way to nudge them into reawakening. Especially with the other health issues you have had they will be under more pressure..

To be down to 4mg in timescale is quite quick, so just slow down your taper overall and - and if it is the beginning of your PMR grumbling you might need a short time on a higher dose than 5mg to get back on track - see flare protocol advice p and maybe see if that helps -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

Sounds as if it might be a bit of a mixture - adrenals probably the culprit for the general feeling of yukness. Has anything changed or happened that might have strained one side?

Neck - sternocleidomastoid muscle?

youtube.com/watch?v=eD3Ds3G...(Not working as expected?)

Left side of hip - where exactly?

To me it sounds as if you might have pulled a back muscle somehow - carrying/trying to move something heavier than you should have maybe? And other muscles are protesting to try to protect the damaged one. It might not have been recently. When did the hip pain start? Was it first? Are you walking differently to try to favour that hip? That can cause all sorts of back ills!

[Carnivoreyogi in reply to PMRpro]

Thank you so much for your replies PMRpro and Dorset Lady. I am on this site regularly and learn so much for your responses to the queries we have. I like Dorset Lady's image of the adrenals "stuttering to life" So I think I'll increase my dosage for the next week or few and see if that addresses the malaise. I do try and do too much--chopping firewood, gardening, little exercises, even walking too much. I've probably tweaked a few muscles along the way and the pain isn't resolving as fast as it would normally. I LOVE the KEN hub video. always love learning about anatomy. The sternocleidomastoid muscle sounds like the one that has been sore for so long. This dance with PMR and prednisone requires so much patience. And this community helps me with keeping the faith that things will eventually resolve.

[PMRpro Ambassador in reply to Carnivoreyogi]

It isn't just doing too much - it is also what you do!!! Chopping wood. Gardening, Hum ...

[Carnivoreyogi in reply to PMRpro]

exactly! my daughter keeps telling me "don't be stupid!"

[PMRpro Ambassador in reply to Carnivoreyogi]

Sensible girl!!!!!