HI, I have PMR/GCA and have been tapering slowly, helped by Actemra. I got to 2mg of Pred and was fine. I didn't use the Actemra on 4th Feb as I had my 4th Covid vaccination that day (I've had experience of my neutrophils dipping dramatically after vaccinations and Actemra might make the recovery slower). A week later I took the Actemra again and reduced pred to 1.5mg, on 10th Feb. Since then I've struggled with flare symptoms. I've read lots of advice about handling flares on HU and thought I could handle it, but am feeling a bit low and uncertain what to do next.
I left it a week thinking it would settle on its own, then increased to 2.5mg on 18th and to 5mg on the following 2 days. For the last week I've been on 6mg and while the symptoms have eased, I still don't feel back to normal.
The symptoms are all PMR related not GCA. Ache and stiffness in hips, thighs and lower back plus some fatigue. I'm keen to reduce the pred as much as I can while I still have the Actemra - heaven knows what's going to happen when it's no longer available. Dr. Mackie has mentioned Leflunomide, but people on HU have reported unpleasant side effects, so I'm not sure about that - yet.
Sorry about this long ramble, but I wanted to put in all the facts. Thanks for reading!