What is the goal when tapering?

Had the same diagnosis. Same issues. Are you taking thyroid medication(s)?

I was diagnosed with PMR and possible GCA in July 2024. Started on 60 mg. of Prednisone due to the possibility of GCA. Prednisone racked my body. I got down to 10 mg. in early December and had a flare. All my original symptoms returned. I had to increase my dosage. I asked my rheumatologist to order Actemra infusions for me. Others in this forum seem to have had good success with it. I started in January and get an infusion every 4 weeks. Took about a month or so, before I notice any difference in how I felt. I'm down to 7 mg. now. I still have minor wrist and knee aches, but my energy level has increased. Not back to pre-PMR, but much improved. I have about 3 good weeks a month. A few days before my infusion, my energy level drops and I get a little more achy. A couple of days after my infusion, I'm tired.

Actemra has increased my quality of life. I'm on Medicare and it pays for the entire infusion. Actemra also comes in a weekly self injection. I went with the infusion, to avoid co-pays with my insurance. I know it comes with it's own side effects. Pick your poison. The Prednisone side effects are horrible, as you know.

I was diagnosed with PMR and possible GCA in July 2024. Started on 60 mg. of Prednisone due to the possibility of GCA. Prednisone racked my body. I got down to 10 mg. in early December and had a flare. All my original symptoms returned. I had to increase my dosage. I asked my rheumatologist to order Actemra infusions for me. Others in this forum seem to have had good success with it. I started in January and get an infusion every 4 weeks. Took about a month or so, before I notice any difference in how I felt. I'm down to 7 mg. now. I still have minor wrist and knee aches, but my energy level has increased. Not back to pre-PMR, but much improved. I have about 3 good weeks a month. A few days before my infusion, my energy level drops and I get a little more achy. A couple of days after my infusion, I'm tired.

Actemra has increased my quality of life. I'm on Medicare and it pays for the entire infusion. Actemra also comes in a weekly self injection. I went with the infusion, to avoid co-pays with my insurance. I know it comes with it's own side effects. Pick your poison. The Prednisone side effects are horrible, as you know.

I was diagnosed with PMR and possible GCA in July 2024. Started on 60 mg. of Prednisone due to the possibility of GCA. Prednisone racked my body. I got down to 10 mg. in early December and had a flare. All my original symptoms returned. I had to increase my dosage. I asked my rheumatologist to order Actemra infusions for me. Others in this forum seem to have had good success with it. I started in January and get an infusion every 4 weeks. Took about a month or so, before I notice any difference in how I felt. I'm down to 7 mg. now. I still have minor wrist and knee aches, but my energy level has increased. Not back to pre-PMR, but much improved. I have about 3 good weeks a month. A few days before my infusion, my energy level drops and I get a little more achy. A couple of days after my infusion, I'm tired.

Actemra has increased my quality of life. I'm on Medicare and it pays for the entire infusion. Actemra also comes in a weekly self injection. I went with the infusion, to avoid co-pays with my insurance. I know it comes with it's own side effects. Pick your poison. The Prednisone side effects are horrible, as you know.

My experience has been very similar to yours. I was diagnosed with GCA and PMR in late June 2024. I started with 60 mg prednisone, and started weekly injections of Actemra in early August. I'm at 5 mg prednisone now, and I have a rheumatologist appointment tomorrow to discuss further tapering. I haven't had any pain or symptoms of PMR or GCA since starting treatment.

I would say I am definitely back to pre-PMR in regards to energy level and quality of life. I still have occasional days where I'm tired, but they don't happen very often. I don't have any drop off of energy between Actemra injections.

I have a Medicare Advantage plan that pays for most of the Actemra. There is a limit this year of $2000 for all Part D medications combined, so that's not too bad. I pretty much met that limit with my first refill of 4 Actemra injections, so for the rest of year I won't have any copays for medications.

My goal is zero pred too. I'm already seeing a big difference at 5 mg. I've lost the small amount of weight I gained from the pred. I'm running as much as 45 minutes several times a week. And my moon face is fading away.