Advice please - I have GCA and an onset of different symptoms.

[Horsewhisper]

Looking for a bit of guidance on new symptoms. For the past two months, after being up and about for a few hours in the morning, I get a sudden onset of all over body pain and stiffness, affecting my head, torso, limbs, right down to my fingers and toes. OTC meds don’t make any difference to the pain and stiffness. However, if I keep moving about and distract myself with keeping mildly busy I can just about manage the pain and stiffness. I was on 20 mg Pred in December and started TCZ in the same month. I’m currently on 12.5 mg Pred, (having reduced slower and in smaller amounts in the last 4 months than Rheumy suggested in conjunction with TCZ ) and 300 mg hydroxychloroquine. Today I upped the Pred by 2.5 mg to see if I get any respite from the symptoms. I wondered if it could be PMR? Or have a reduced the Pred too quickly even with TCZ? I have flagged these symptoms with Rheumy helpline and they’re getting back to me with an in-person clinic appointment. Whilst I’m waiting for that I wondered if anyone had any ideas?

[PMRpro Ambassador]

With TCZ a speedy reduction shouldn't be too much of a problem.

Have you tried taking magnesium supplements? Is it like the PMR pain and stiffness?

[Horsewhisper]

Thanks Pro - I’ve got some Magnesium supplements as my daughter takes it to help relieve RLS type symptoms, I’ll give that a go and let you know how I get on. I did wonder about PMR pain but it is not limited to shoulder, hip and thigh pain, it’s head, arms, legs and extremities too. Does PMR affect these areas also? I have a Neuro appointment in June, so if I still have these symptoms by then, I will report them in to him also. Re: Pred reduction, I have averaged 0.5 mg per week since January instead of the 2.5 mg per week as suggested by Rheumy as wanted to take it nice and steady to avoid any flare ups.

[PMRpro Ambassador in reply to Horsewhisper]

i was thinking that but you never know with a PMR flare!!! Does the stiffness last long?

[Horsewhisper in reply to PMRpro]

Indeed! The pain lasts all day, into the evening until I go to sleep then it starts up the next day again

[PMRpro Ambassador in reply to Horsewhisper]

That is characteristic of stiff man syndrome - a very rare autoimmune disorder - but that isn't usually how it starts unless you have an acute attack. We were discussing it on the lupus forum (I think) some weeks ago. And I assume it would be neuros who would deal with it.

[Horsewhisper in reply to PMRpro]

Thanks for this Pro, so helpful - yes we were - and D🏃‍♀️provided some useful info. I’ll see what both Rheumy and Neuro suggest in the coming weeks and try the Magnesium to see if that helps.

[PMRpro Ambassador in reply to Horsewhisper]

Do tell me what the neuro comes up with - hope it is a good meeting

[Horsewhisper in reply to PMRpro]

Thank you Pro, will do 🤞