GCA Flare

[Susanmod]

Hi, not posted for awhile as been ok. Started on 40 mg 17 months ago with GCA. Had a couple of hiccups but as told by my rheumatologist in March keep reducing 1 mg per month. I was down to 5mg for a couple of weeks and struggling a bit - tired, a few head tingles and neck ache but soldiered on. However went for routine appt and saw different rheumatologist (same dept) who seemed horrified I had been told to reduce 1 mg per month and said I would definitely get 'it' back again. Told me to keep on 5 for another 6 months and also do 2 days on 10mg. It was as if he jinxed me as that night started with headache. I have been on 10 for 4 days and still not settled. How long should I stay on 10 or should it be more and do I reduce to 5 slowly again?

Also I had a dexa scan in May (I asked for one after reading on here about alendronic acid. The same consultant was very reluctant to give me results just said my spine was slightly below average so should be taking it. I am feeling very deflated after my visit and would appreciate your help.

[PMRpro Ambassador]

Spinal dexascan results are often lower than the hip, mine is, but the comment is meaningless (it isn't an average concept). It is YOUR body and YOUR result - your GP should have a copy though or should be able to get one.

I would suspect the tingles you had were the beginning of the flare - and if the 10mg isn't managing it perhaps a chat to your GP is called for. If you need more than a week of 10mg then yes, I would reduce slowly back to 5mg, you don't know what is going to be the right dose to manage a flare if that is what it is. Do you have any signs of anything else going on? A cold for example?

[Susanmod in reply to PMRpro]

Thanks for your reply. No cold, just the headache on 10. I will stay on 10 for a week and see how it goes.