Are others with GCA and PMR on Tyenne Monthly Infusions?

Hi, Julie,

What is the source of your information that CRP and ESR labs are no longer trusted measurements while one is on Tyenne? I’ve been on monthly biologic infusions for PMR for over a year. I was briefly on Actemra, now on Tyenne, following many months of Prednisone. I experience muscle weakness and pain in my thighs and hip area that I didn’t have when on Prednisone. My rheumatologist says it isn’t PMR because of my lab results. I’d love to know what it is!

@jck51 Please understand that members of Mayo Clinic Connect are not medically trained so we often don't really understand whys. We are all patients of a Dx that is confounding even to the doctors treating us. PMR/GCA/vasculitis are all uncommon to rare medical problems with limited knowledge professionals available to treat us.
I can not get a consistent answer when I ask just two rheumatologist. I have a treating doctor where I live and I have a 2nd opinion Rheumy who works with a different teaching hospital in a different state. Some days I'm not sure they would agree on sunrise in the East vs. West.
As far your question on Inflammation markers while on an IL-6 biologic. I asked my AI tool and it dumbed it down so I could understand. They are indeed not reliable when on Actemra/Tyenne. Possibly you use an AI tool and can query it. I have learned to change the question I ask if my tool doesn't answer my question on the first try. You can also try doing a simple internet Search -ask Dr Google.

@jck51 Please understand that members of Mayo Clinic Connect are not medically trained so we often don't really understand whys. We are all patients of a Dx that is confounding even to the doctors treating us. PMR/GCA/vasculitis are all uncommon to rare medical problems with limited knowledge professionals available to treat us.
I can not get a consistent answer when I ask just two rheumatologist. I have a treating doctor where I live and I have a 2nd opinion Rheumy who works with a different teaching hospital in a different state. Some days I'm not sure they would agree on sunrise in the East vs. West.
As far your question on Inflammation markers while on an IL-6 biologic. I asked my AI tool and it dumbed it down so I could understand. They are indeed not reliable when on Actemra/Tyenne. Possibly you use an AI tool and can query it. I have learned to change the question I ask if my tool doesn't answer my question on the first try. You can also try doing a simple internet Search -ask Dr Google.

Diagnosed with GCA Jan 2025, confirmed with temporal ultrasound at Univ of WA GCA fast-track clinic. Started 60 mg prednisone, and Actemra (now Tyenne_. Once treatment began, my CRP and ESR went to 0 and 1 respectively, and GCA symptoms disappeared. My understanding is that CRP and ESR are so low because the treatment reduces the inflammation, but does not “cure” the underlying disease., and that GCA will resolve in its own time. Still, I am told that if there is a flare while on the treatment, the numbers will likely go up, so hence the continuing blood tests. Aside from all of this, I have PMR symptoms, but also have hip osteoarthritis, same symptoms of pelvic girdle, gluteal pain. Doc thinks maybe not PMR, but she is not sure. I am trying PT to see if it helps.

@dadcue
Also good points, thanks. These last two posts are the type of information we really need to understand.

@sjc123
Hi @sjc123: Hmmm...my Rheumatologist did not assure me that GCA would resolve. She said that I would likely be on Tyenne for the rest of my life, but did not rule out tweaking dosage schedule at some future point. I must say that I was bummed out to hear that, as initially I was either told or read that I'd be on treatment for about 2 years, depending.....and expecting a remission. That info changed to treating forever. I've been on monthly infusions for 14 months now and weekly injections for 3 months prior to that. (Dx'd PMR/GCA both July 2024.) I was told that I MUST have the injections exactly 4 weeks apart (& only if absolutely necessary, no more than 1-2 days leeway in either direction). Thus, I am already scheduled out every 4 weeks thru December 2026 at Kaiser-Permanente! I'll see what my Rheum says about a flare (symptomatic) and CRP labs (increasing?) while on Tyenne. Perhaps the same thing yours said, but will see. They never do an ESR lab with me, just CRP. They told me that ESR is unnecessary and that only CRP is needed (post diagnosis). I can ask Rheum again about that.

For us all...maybe there will be a scientific breakthrough in the future--who knows?

Hafta add one incredible silver lining for me: Tyenne (& possibly the prednisone prior?) seems to have shut down my killer 3-4-day migraines that I had 1-2x/month for 3 decades! I've only had 2 milder migraines in 17 months. Talk about the gift of time returned!!!

I sure hope that PT helps with your PMR symptoms, or whatever it is that is causing the pain.

@julieahp For what it is worth, I see a rheumatologist and a physician's assistant at the rheumatology office. The PA was like your rheumatologist, and implied that I would need to keep taking Actemra indefinitely. But I saw the rheumatologist at my last appointment, and for the first time in a year and a half, he started talking about the potential end of my treatment. He wants me to keep taking weekly Actemra injections for another few months, to get me through to 2 years of treatment. Then he plans for me to switch to injections every other week for a year, and then stop treatment. Hopefully it will work out that way. I consider my case of GCA to be fairly severe, but my rheumatologist thinks it will be safe to stop treatment after 3 years.

@jeff97

My rheumatologist and I discuss "possibilities" but in reality, there is no plan to ever stop my Actemra infusions. I'm into my 8th year of being on Actemra, I started with injections every 2 weeks before switching to weekly injections. Now I do an infusion every 4 weeks but I have gone almost 7 weeks between infusions.

I have a general sense of how long I can go without an infusion. It varies from 4-6 weeks to actually do my infusion but my rheumatologist doesn't want me to go more than 6 weeks.

Sometimes I feel like I don't need the infusions anymore. We talk about stopping Actemra but my rheumatologist only says that I don't need to stop Actemra. My rheumatologist would let me stop Actemra but he doesn't understand why I would do that. That is in contrast to how my rheumatologist felt about me being on Prednisone. When I was taking Prednisone --- it was like every visit emphasized how to get me off Prednisone and how I could NOT be on Prednisone any longer. I didn't know how I would ever be able to taper off Prednisone.

@dadcue Actemra is listed in my chart at the rheumatologist's as a high risk drug. Liver damage, serious infections, and bowel perforations seem like good reasons to stop if possible. A person can try stopping and then restart if necessary.