Connect
Are others with GCA and PMR on Tyenne Monthly Infusions?
I just joined today, 1/17/26, after having been diagnosed with GCA & PMR in 7/2024. On High dose (60mg) Prednisone for several months, tapering over a year+ to 0 as Tyenne (an Actemra biosimilar) was introduced 9/24. Would love to hear from others on a similar path and any significant experiences.
I had classic jaw claudication & 2 scary vision episodes & more.... No permanent damage. Almost 65, living in Seattle area, work full time+ (necessary), exercise (walk hilly, long distances) as often as I can, anti-inflammatory diet. Still, I worry about relapses (30%) that I've read about even while on Tyenne infusions and rate being higher (50%) if one stops biologic infusions. It worries me that CRP and ESR labs are no longer trusted measurements while one is on Tyenne, although these labs are still drawn & monitored--not sure why if not reliable results. Feel muscle weakness & some upper back & hip pain daily now, whereas it was absent before, but want to balance awareness of it with not overreacting to it--unsure of balance line. I don't let it stop me from previous activity level. Not aware of any treatment that surpasses my Tyenne infusions, nor any new promising treatments in development pipeline now (some shot down).
Kind Regards to All. --Julie
Like
Helpful
HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Connect
@jeff97
Hi Jeff, Thanks for sharing this info. It is definitely helpful to have this support group to learn others' experiences and, in an indirect way, have access to other doctors' recommendations to share with our doctors. That 2 years (minimum) seems to be a common expectation. Since they are monitoring liver & kidney (ALT, AST, Creatinine labs, others?), I'm content to let Tyenne beat GCA into submission for awhile (on Tyenne for 17 mos now) and not "rock the boat".
I know we're all rooting for you to stay well after you stop treatment. That would be some fantastic news.
@dadcue
Interesting, Mike! I'll have to google synovial cyst--causes, etc. Hmmm....what all Actemra/Tyenne can do in addition to being prescribed for GCA! (Well, so many things connected/related to any particular disease process...). Just like Tyenne removed my 3 decades of absolutely debilitating migraines, though it is not prescribed for migraines.
@jeff97
Hi Jeff,
Yup, side effects listed understood. But ongoing monitoring to prevent/address. And perfectly reasonable to work with doc on stopping & restarting. Years ago, Steve Martin wrote an hilarious satirical piece on listed side effects. I believe them (side effects), but also with a grain of salt for good reasons.
@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?
Has anyone tried the biologic Simponi Aria? Or because of age just die with it. Tried another biologic and broke out in hives and had a cough. At what age should you accept your fate @dadcue
@dadcue read previous message
@marymckeith
I don't know about my fate. My rheumatologist only told me that I was "too young" to take prednisone for the rest of my life. I was 64 at the time so my rheumatologist thought I had too many years left to be on prednisone. I took prednisone for half of my left already but only 12 years to treat PMR.
I only know when I was still on Prednisone at the age of 64 living to the age of 70 was inconceivable to me. Now I'm almost 72 and still alive. I honestly believe Actemra saved my life. My quality of life when I was on Prednisone was deteriorating but now it is improving since I tapered off Prednisone. I might have cancer though but that isn't confirmed ... just something that "looks suspicious" that was an incidental finding on a CT scan.
Simponi Aria (golimumab) is a TNF-inhibitor biologic indicated for rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, and juvenile idiopathic arthritis, but it is not FDA approved for Giant Cell Arteritis (GCA) or PMR.
TNF inhibitors have generally shown limited success as steroid-sparing agents for Polymyalgia Rheumatica (PMR) and Giant Cell Arteritis (GCA) in controlled trials, despite initial promise in smaller studies.
I actually tried a TNF inhibitor for a few months but it didn't seem to work for me as well as Actemra did. I believe you won't know what will work unless you try it to see.
-
Like -
Helpful -
Hug
1 Reaction@julieahp
Synovial cysts usually form when chronic inflammation is present.
https://my.clevelandclinic.org/health/diseases/synovial-cyst
--------------------
The synovial cyst I had was starting to cause cauda equina syndrome.
https://pubmed.ncbi.nlm.nih.gov/22996855/
-
Like -
Helpful -
Hug
1 ReactionClearly we all get varying information from our Rheumy. My GCA is temporal Arteritis vs large vessel vascular, so may that accounts for some difference, but still, lots of variation. My doc says my infusions must be no sooner than two days less than 4 weeks as the insurance will not pay if sooner. But after 4 weeks, there is much more flexibility due to the long half-life of Actemra/Tyenne., and the insurance company is not concerned with infusions over 4 weeks. One time I came for my infusion with a sinus infection, and my doc said to come back for the infusion in a week or so after it cleared up, no problem. Also, once I am off prednisone (maybe two more months), I am to continue infusions for six months, and then we may begin to reduce the amount of the drug over time. It “all depends.”
@vmaynard
Hello. Much empathy for what you've gone through, all of it. I messaged you about UTI prevention, hoping it does help prevent. As you probably know, Actemra/Tyenne renders us immuncompromised, so unable to fight off many infections, particularly respiratory infections. But UTIs are difficult to fight off. Preventing bacteria from going where (or building up) it should not go is more important than ever. Routinely drink lots and lots of plain water (keep your system flushed and not concentrated) and void frequently, even before you feel the urge. UTIs not treated soon enough can lead to sepsis, as you surely know. Some can be "silent" but I'm guessing that most are terribly painful/uncomfortable. I hope you stop getting them and can stay off of antiobiotics.