GCA-When to start Actemra?

[pomeranion]

What if Rheumatologist doesn't want to start administering steroid reducer? Any suggestions from this knowledgeable group.

[SnazzyD]

Hello, have they said no or is this in anticipation of them saying no?

[pomeranion in reply to SnazzyD]

He said flat out no. Please see my reply post to Dad2Cue. All explained. In holding pattern now. Thank you.

[pomeranion]

The Rheumatologist that was treating me for PMR just informed me that he never thought I had PMR. No confirmed testing. Never had raised levels and now all negative testing for suspected GCA. Now I don't trust him. He refuses to recognize any of my improved PMRwith reducing from 45mgs. to 9mgs. in a year. After cataract surgeries PMR and GCA symptoms spiked 4-4-22. Severe headaches and all new GCA symptoms started. If GCA would be confirmed we had discussed steroid sparer because all he is concerned with is and was my steroid usage. Now he reduced me from 60mgs. to 9mgs. and suggested I return to my GP (who first treated me with the PMR). He also suggested I should explore a 2nd. opinion. Appointment with GP 5-24-22 and he upped prednisolone back to 60mgs. to be re-visited in 2 months. Also referred to Neurologist and MRI for further exploration. Anxiety somewhat relieved and hoping things can turn around. Thank you for your ongoing input.

I will try to keep you all posted.

[pomeranion]

Thanks for this reply. A little late in getting updates. The brain fog, confusion, fatigue, PMR and GCA pain has really slowed everything down. Trying to stay optimistic.