.... although my Rheumy hasn’t called it that. My inflammation number was 125 when diagnosed I was then on 40mg of Pred. I tapered to 5mg and my numbers where back in normal range and I felt well, but I never saw the figures.
I’m getting some pain in my lower back and across my shoulders , and the dreaded fatigue
My number is now 335 .... 335 ?
I’m flabbergasted, has anyone else experienced these figures?
Hi Sheffield-Karey
Did you have your bloods done at GP Surgery or Hospital, has Consultant/GP seen/commented on the results?
It would indicate some sort of infection or a massive flare, I’d suggest getting in touch with Consultant/GP to discuss further.
Have you seen the results yourself or did someone give them to you over the phone? I’ve been given a wrong result in the past, so double check & make an appointment with GP
Do let us know how you get on.
MrsN x
The nurse showed me her screen at the hospital... I’ve upped my Pred to see if it calms down
Did she make any comment or recommendation?
Increase in Pred from 5 to 15 mg and 3 weekly blood tests
Hi,
Are you sure the number is not 33.5?
The instrument used for this test usually only goes to 200.
If you haven't got a chest infection I imagine this is a flare. A flare because you have been reduced to too low a dose of pred without care. You have symptoms to match. How fast and in what intervals did you reduce the dose?
But to have blood markers like that I'd be concerned you might be hatching GCA/LVV - although I do hope the nurse has sent another sample for checking - and I'd love to think she has misread it!!!
What’s LVV?
I’ve got blood tests every 3 weeks now until it settles
I reduced from 40mg to 5 over the course of 10 months usually by -2mg at a time.
Large Vessel Vasculitis - vascular inflammation that can't be proven to be due to giant cells and which affects the larger arteries in the trunk
I seem to have very high ESR and CRP, doctors now say it is just me! I always ask for a printout of the results.
Don't understand those readings unfortunately - you will get the pain and fatigue at that dose so no further reductions at the moment - in fact you might need to up the dose. I would ask your GP to interpret those readings and hope they're wrong. Hope it's not a flare. ATB.
I think it was a GCA Flare
Am i having a flare up
Am I having a flare up? 
Flare I think
how do I know if I’m having a flare while reducing or is it just my adrenals trying to wake up 😧
