GCA prednisone vs. actemra infusion therapy

"I did approach my new rheumatologist (first appt with her) about checking for antibodies to Actemra…. She was not sure how available that testing was, and it was not pursued."
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I only know it was something my rheumatologist was worried about when I first started Actemra.

"Moreover in patients with RA, methotrexate comedication was associated with fewer antidrug antibodies."
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2807157
I have been on Actemra for almost 6 years and it still seems to work for me. I'm not taking MTX and I haven't been tested for anti-drug antibodies either. I think my rheumatologist wanted to start MTX when he started Actemra. However, I said my liver didn't handle MTX very well when I took MTX in the past so he didn't pursue it.
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Was the relapse you had while on Actemra a PMR/GCA relapse?

When Actemra enabled me to taper off Prednisone the first time, I had a relapse too. It wasn't a PMR relapse though. I had a uveitis relapse that was associated with reactive arthritis. Within a week or two of getting off Prednisone for the first time in 12 years, I was on 60 mg again for uveitis. It was a devastating turn of events.

When my ophthalmologist wanted me on a TNF inhibitor instead of Actemra, I reluctantly agreed. I was on Humira and Prednisone for a few months. When I tapered down to 15 mg of Prednisone while I was still on Humira ... I had a PMR relapse.

A long discussion with my rheumatolgist ensued. He said multiple autoimmune disorder are sometimes impossible to adequately treat with biologics. A biologic that works for one autoimmune condition doesn't work for the other autoimmune condition. I was given a choice between Humira or Actemra but not both. The other option I was given was to continue with more Prednisone.

It didn't take me long to decide and I chose Actemra. That was when my rheumatologist told me to do weekly injections instead of every 2 weeks. Weekly injections worked well and I tapered off Prednisone in 3 months the second time.

Monthly infusions have worked even better. Now my rheumatologist controls my Actemra dose and adjusts it according to labs and how I feel. I'm currently only getting 500 mg every month with no relapses of anything.
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My cortisol level prevented me from tapering off Prednisone the first time. I had to stay on 3 mg of Prednisone and I was told not to go any lower. It took time but after my cortisol level improved, an endocrinologist said I could just discontinue Prednisone if I didn't need prednisone to control PMR. My endocrinolgist said 3 mg was a low dose and there was no need to taper as long as my cortisol level was "adequate." She wouldn't guarantee my cortisol level would be adequate every day going forward. She said my symptoms might was and wane and to expect good and bad days. She also said unless something catastrophic happened, I shouldn't have an adrenal crisis. Fortunately nothing catastrophic happened and I have been of Prednisone now for almost 4 years.

Hi @dadcue, I also find your posts very helpful and was hoping you could share more about Actemra Injections vs Infusion. I have had significant pain with tapering—even with very small doses (.5 mg) and have not been able to get below 15 mg of Prednisone in my 2.5 years with PMR. My pain becomes unbearable (7 to 8 level) in hips, shoulders and low back. I currently use a rollator to get around and have actively seen an Orthopedist, Rheumatologist and PT. I am scheduled for my 4th Actemra infusion on Monday but to date, I have not seen any major improvement. I do believe that my shoulder pain may have slightly improved but the hip and back pain have not diminished at all. I noted that you switched from infusion to injections and then back to infusions when you were well controlled. Do you think that the injection was more effective for reducing pain? Thanks for any insight you can provide. Blessings! ❤️

This subject is very complicated. I don't know all that much other than what my rheumatologist tells me. It boils down to the following:

"Unlike intravenous dosing, the tocilizumab subcutaneous dosing regimens use a fixed dose (162 mg) over a wide range of body weights."

Good luck with understanding the link that this quote is taken from.
https://pmc.ncbi.nlm.nih.gov/articles/PMC5363244/
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I can share with you my personal experience with taking Actemra. I had an extremely good response to Actemra with very miniml side effects. My rheumatologist is amazed with how well Actemra is working for me. Since it is working so well for me, my rheumatologist seems reluctant to discontinue Actemra.

During the course of my almost 6 years of taking Actemra the route of administration, frequency of injections, dose of my infusions and frequency of my infusions have all been tweaked. During Covid, Actemra had to be stopped when Actemra was unavailable. I didn't do well when Actemra was stopped. Unlike Prednisone, Actemra can be easily discontinued if necessary. Actemra is like any other medication and it needs to be adjusted based on a person's individual response.

My first experience with Actemra was doing injections every 2 weeks. My rheumatologist wasn't sure what would happen. The reason I was given for starting with injections every 2 weeks was to "play it safe!"

Much of what is known about Actemra is from the research that was done for people with RA. For PMR/GCA what has been learned is mostly based on "good results" from the GIACTA study and not much else.
https://www.nejm.org/doi/full/10.1056/NEJMoa1613849
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When I started with the Actemra injections every two weeks I had to commit to giving Actemra a chance to work. Actemra didn't work immediately and I didn't notice any significant changes at first. I wasn't that sure Actemra was working until I started tapering my Prednisone dose by 1 mg per week. I only tapered my Prednisone dose that quickly "in order to get the inevitable flare over with."

When the flare didn't happen, I decided to tell my rheumatologist that I was down to 3 mg of Prednisone and I wasn't sure what to do next. At least I realized that I was in uncharted territory. My rheumatologist wasn't sure what I should do either until I reminded him that an endocrinologist said I should come back to see her if I ever got down to 3 mg of Prednisone.

My rheumatologist thought it was prudent to check my cortisol level before referring me back to the endocrinologist. When my cortisol level was low, my rheumatologist told me to stop tapering. He told me to stay on 3 mg until I could be evaluated by the endocrinologist.

Uveitis, you have dealt with a lot. I read up on it when I was having subconjunctival hemorrages continuously for 6 months. I was on 35 mg of prednisone when it started, and Actemra. It stopped suddenly after I had decreased prednisone to maybe 10, and hasn’t returned. No explanation ever found.
To answer your question, The relapse I had was GCA, scalp tenderness and temporal pain. No PMR symptoms that I recall.

Thanks so much for sharing your experience and for providing the links. I am not familiar with the study and found the outcome very encouraging. I look forward to a complete review. Knowing that you did not have “immediate” success is also helpful. I think I was worried that it just wasn’t working but it might just be time to tweak this a bit.

I have found this group to be incredibly beneficial when we share a little bit of our personal experience. When you got better, you could have chosen to go back to your regular life but thanks for sticking around to offer up some experience when you have it. Wisdom during the journey is all any of us can hope for. Biggest Blessings! ❤️

"I did approach my new rheumatologist (first appt with her) about checking for antibodies to Actemra…. She was not sure how available that testing was, and it was not pursued."
-----------------------------
I only know it was something my rheumatologist was worried about when I first started Actemra.

"Moreover in patients with RA, methotrexate comedication was associated with fewer antidrug antibodies."
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2807157
I have been on Actemra for almost 6 years and it still seems to work for me. I'm not taking MTX and I haven't been tested for anti-drug antibodies either. I think my rheumatologist wanted to start MTX when he started Actemra. However, I said my liver didn't handle MTX very well when I took MTX in the past so he didn't pursue it.
---------------------------
Was the relapse you had while on Actemra a PMR/GCA relapse?

When Actemra enabled me to taper off Prednisone the first time, I had a relapse too. It wasn't a PMR relapse though. I had a uveitis relapse that was associated with reactive arthritis. Within a week or two of getting off Prednisone for the first time in 12 years, I was on 60 mg again for uveitis. It was a devastating turn of events.

When my ophthalmologist wanted me on a TNF inhibitor instead of Actemra, I reluctantly agreed. I was on Humira and Prednisone for a few months. When I tapered down to 15 mg of Prednisone while I was still on Humira ... I had a PMR relapse.

A long discussion with my rheumatolgist ensued. He said multiple autoimmune disorder are sometimes impossible to adequately treat with biologics. A biologic that works for one autoimmune condition doesn't work for the other autoimmune condition. I was given a choice between Humira or Actemra but not both. The other option I was given was to continue with more Prednisone.

It didn't take me long to decide and I chose Actemra. That was when my rheumatologist told me to do weekly injections instead of every 2 weeks. Weekly injections worked well and I tapered off Prednisone in 3 months the second time.

Monthly infusions have worked even better. Now my rheumatologist controls my Actemra dose and adjusts it according to labs and how I feel. I'm currently only getting 500 mg every month with no relapses of anything.
------------------
My cortisol level prevented me from tapering off Prednisone the first time. I had to stay on 3 mg of Prednisone and I was told not to go any lower. It took time but after my cortisol level improved, an endocrinologist said I could just discontinue Prednisone if I didn't need prednisone to control PMR. My endocrinolgist said 3 mg was a low dose and there was no need to taper as long as my cortisol level was "adequate." She wouldn't guarantee my cortisol level would be adequate every day going forward. She said my symptoms might was and wane and to expect good and bad days. She also said unless something catastrophic happened, I shouldn't have an adrenal crisis. Fortunately nothing catastrophic happened and I have been of Prednisone now for almost 4 years.

Thanks for sharing. So much to consider as we walk this path. How much is PMR and how much is just getting older and wearing out. Willing to share your age?