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What is the goal when tapering?

Polymyalgia Rheumatica (PMR) | Last Active: Apr 25 4:32pm | Replies (23)
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@ropnrose

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.

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Replies to "I was diagnosed with PMR and possible GCA in July 2024. Started on 60 mg. of..."
ropnrose | @ropnrose | Apr 24 8:24am

I forgot to add. My goal is 'zero' prednisone.

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jeff97 | @jeff97 | Apr 24 9:07am

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.

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nothatkaren | @nothatkaren | Apr 24 1:07pm

Agreed that the side effects are so bad. I felt awesome for the first week on Prednisone. Then reality hit. I am fortunate to have a very good benefit plan and my prescriptions cost me under $4.00. Essentially, its a dispensing fee for the pharmacy. I'm not sure if Actemra is approved here in Canada, but I will ask my rheumatologist at my next appointment.

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Mike | @dadcue | Apr 24 2:17pm

"Others in this forum seem to have had good success with it."
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Now that more people are reporting success with Actemra - I would like more people to share their personal experience with stopping Actemra. Does anyone have a "sustained remission" after stopping Actemra???

My rheumatologist wanted me to try Actemra 6 years ago. I was on another PMR forum at the time seeking information from anyone with personal experience with Actemra. There was a backlash from the patient "PMR experts" who claimed to be "entitled" to know things about PMR that no one truly knows. They were pro-prednisone and anti-Actemra for unexplained reasons. They didn't have any personal experience with Actemra and the research evidence that Actemra worked for many people was dismissed.

All I said was Actemra "seemed to be working" and I wanted to be off prednisone because of my many long term side effects from prednisone. In the short term, prednisone wasn't so bad for me. However, I didn't want to be on prednisone for the rest of my life.

I'm happy that Actemra works for some people as it did for me. I have been on Actemra for 6 years without any serious side effects. I tapered off prednisone within a year of starting Actemra. I exceeded my rheumatologist's expectations because he would have been happy if I could get down to 3 mg of prednisone. Considering I took moderately high doses of prednisone daily for 12 years ... Actemra has worked remarkably well for me.

The downside of Actemra has been my inability to stop Actemra. It was stopped once because of supply chain problems during Covid. I had a full-blown relapse and needed prednisone again. My longest period of time between infusions was 7 weeks when my symptoms started to return but I didn't need to restart prednisone that time. Overall, my quality of life for the last 4 years has been much better compared to my 12+ years on prednisone. However, I don't want to be on Actemra for the rest of my life either.

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