Disease Relapses among Patients with Giant Cell Arteritis: A Prospective, Longitudinal Cohort Study. exerpt
"The most common symptoms at relapse were headache (42%) and polymyalgia rheumatica (51%), but ischemic (some transient) manifestations (visual symptoms, tongue or jaw claudication, and/or limb claudication) occurred in 29% of relapses (12% cohort). Forty-three relapses (73%) occurred while patients were taking glucocorticoid therapy at a median (range) prednisone dose of 7.5 (0-35) mg. In 21% of relapses, both erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP) were normal."
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gifford7
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“CONCLUSION: Among patients with GCA, relapses are common, often occurring during treatment. ESR and CRP are frequently normal at times of clinical relapse, highlighting the need for better biomarkers to assess disease activity in GCA. There remains a need for effective therapeutic alternatives to glucocorticoids in GCA.”
Actually the Conclusion should be - better tapering of steroids i.e. slower! Plus acceptance that the illness lasts longer than the medical experts seem to think!
I had GCA, started at 80mg, tapering slowly to zero over 4.5years. Never had a relapse, flare - whatever you like to call it- same thing!
I know my GCA went into remission 6 months before I got to zero - add that to the 18 months before diagnosis - gives a lifespan of 5.5yrs. I would hazard a guess that’s not unusual!
p.s. according to English dictionary -
Flare (v) (get worse) - also flare up When something bad such as violence, pain, or anger flares (up), it suddenly starts or gets much worse:
Relapse (n) If someone who is getting better after an illness has a relapse, they become ill again:
She was looking quite healthy on Friday, but she had/suffered a relapse over the weekend and was taken back into hospital.
Different words to mean the same thing - there is a lot of cross-use of words between patients and doctors, We use one, they use another but we actually mean the same thing. Good doctors are aware of that - poor ones aren't.
Thank you very much for the reference - I've said it often enough but having it in print is helpful when telling the professionals!!!
If I didn't think it would put her back up I would show it to my rheumy! I don't know how many times doctors have said when I report a flare "but your markers aren't raised"
Exactly! Right now I am experiencing my worse flare and my rheumy wants me to stay at my same dose of 45mg and not increase it.... my blood markers 4 days ago were "normal". I did increase it and it is much better, but still not under control at 65mg.
Thank you for this link! I printed it out and will show it to her tomorrow. Respectfully of course. She may fire me as a patient as she already accuses me of practicing medicine without a license.
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Asking for ESR & CRP numbers
GCA symptoms normal CRP
CRP and ESR
CRP / ESR - the % that ‘never raise’
Symptoms reduced but ESR/CRP unchanged 
