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
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Great news here, too. Actemra was accepted indefinitely. So grateful for the doctor and pharmacy workers who made this happen. Took my last Tyenne yesterday to my delight!
Hope everyone can get the same positive result.
Sorry, but i think I posted this in the wrong place.