In medical remission (until the next blood test possibly) from Tak. Now on 2mg Pred daily and 12.5 Methotrexate weekly. I usually have a couple of days per week where I feel like I have flu BUT every morning I feel totally exhausted and ache all over! I was never a morning person but this is ridiculous!
Could this be the tapering? Anyone else going through this?
It could be the tapering. Did you have a Synacthen test to check your own cortisol production is working properly below 7.5mg? Often it's administered at 5mg or similar.
Since my huge relapse in 2004 - 10 years into my disease - I've never got down below 7mg. And for me the problems with tapering are usually my neurological cerebral vasculitis symptoms worsening, rather than the typical tapering problems other people have. Ie my disease is still too active, and still needs a hefty steroid dose (plus other drugs) just to control it.
But what you describe sounds as though it could be a tapering problem, where your vasculitis disease is controlled, but your body does not cope well when the steroid dose drops too low. People who have this problem often talk of aching all over or similar.
You must speak to your medics about this, preferably your hospital consultant, but the GP would be a good first step.
Thank you for replying.
Contacting my consultant is not that simple unfortunately - I need a filling replaced in my tooth and my dentist wanted to know if he needed to do anything in particular and it took 6 weeks for the rheumy nurses to respond on behalf of my consultant who is considered one of the best.
I haven’t had the test to check cortisol level and I think that may be my next stop. I heard that all meds had to be stopped for this test and carried out in hospital - is that correct?
How hard is it to get diagnosed?
Is it possible to recover from vasculitis or is it a life sentence?
Just diagnosed - vasculitis GPA 
Is this Vasculitis? Scalp
Faking it?
