Hello, I've had GCA and PMR for a year. I'm on Actemra and prednisone. I was reducing and got down to 12.5mg three months ago. But the symptoms came roaring back and I kept having to increase the dose. I've been on 35mg for one month. I tried to reduce by 2.5mg but the unbearable headache came back.
My rheumatologist says the prednisone is way too high and she thinks I may have some other medical condition due to my ongoing symptoms. She thinks I should be way lower due to the Actemra. I tried to explain that Actemra doesn't work for everyone the same way. She wants me to see a neurologist to check for other diseases.
I'd love your advice on what to do. Is this on the spectrum of normal for GCA and PMR? Should I try to reduce by only 1mg per month?
Thanks in advance. I am grateful for you all.
Pottery Lady