Following on from my post a month ago, I wanted to update people because my case could have profound ( even life-saving) effect on fellow GCA sufferers.
I had a suspected relapse (after more than 15 months of absolutely no symptoms, steroids very gradually reduced to 3 mg daily, and inflammatory blood markers really low for at least 6 months), then completely out of the blue, a routine blood test showed the markers had shot up ( but no pain, no symptoms at all).
My GP increased pred to 10 mg ( for the 2 weeks when I was away on holiday), but the next blood test still showed high inflammatory markers, so the consultant was consulted and upped my pred. to 20mg. Because of the horrendous side effects I get when on anything higher than 25 mg prednisolone ( plus it’s now given me steroid-induced diabetes), my ( new, wonderful NHS ) consultant thought I ought to have a PET-CT scan ( to try to see what was causing the inflammation given I had no infection- could have been cancer).
If the results showed active disease (i.e. inflammation of arteries despite no symptoms), she would recommend me to go on Tocilizumab, now approved by NICE in the UK but previously not prescribed for GCA sufferers.
The scan results came through 2 weeks ago and shocked everyone. Temporal arteries no longer being attacked BUT all of my major arteries ( aorta, carotids, sub-clavian, you name it) have significant inflammation and evidence of being actively attacked, and I could easily have had a stroke, aneurysm or heart attack and be dead!
I am now on 40 mg pred. ( hopefully not for long or I’ll be dead anyway- horrendous side effects for the past 2 weeks, hallucinations, no sleep for 5 days, uncontrollable sobbing for no reason and had to call out the mental health crisis team). Now waiting for the results of a test for latent TB before I can start on the Tocilizumab, but that should be in the next couple of weeks.
I’ve gone on long enough, especially as we are all trying to be positive and think about the festive season but......
The bottom line is
at time of GCA diagnosis, arteries should all be looked at (not necessarily by PET-CT scan- there are other cheaper, less nasty methods) to look for involvement of other arteries.
An ultra-sound of temporal arteries needs to be done fast ( many places now prefer this to temporal artery biopsy).
A bone scan should be done BEFORE going on to Alendroic acid
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