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Are others with GCA and PMR on Tyenne Monthly Infusions?
Polymyalgia Rheumatica (PMR) | Last Active: 4 days ago | Replies (58)Comment receiving replies
@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.
Replies to "@sjc123 Hi @sjc123: Hmmm...my Rheumatologist did not assure me that GCA would resolve. She said that..."
@julieahp I was diagnosed with GCA in July 2025, a few months after I had spine surgery. During my rehab for my surgery I experienced headaches and slight jaw pain. Following that I experienced blurred vision in my right eye. I immediately saw my eve doctor who ran tests and surmized that I had GCA. I was hospitalized for one week where they placed me on 60mg. of predisone and then 2 days of IV steroids. Other tests were run and upon discharge I was placed on lowering doses of prednisone. In September, I started IV infusions of actemra once a month until January of this year.I then started Tyenne injectables once a week. Since starting actemra/tyenne,I have had 3 UTI's.Thank God for my primary dr. because my Rheumatologist doesn't seem to have time to address this issue. Has anyone else been experiencing UTI's while on Actemra/Tyenne?
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@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.