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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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Welcome @parktaekyu and @snudge, There are quite a few members with PMR who have used Methotrexate to help taper off of prednisone. Here's a discussion that might be helpful:
-- Methotrexate to wean off long term Prednisone for PMR
https://connect.mayoclinic.org/discussion/methotrexate-to-wean-off-long-term-prednisone-for-pmr/
My PMR is currently in remission but I've had two episodes, the first one took 3 and half years to taper off and the PMR came back 6 years after remission. It took me 1 and half years to taper off the second time. What helped me during both occurrences was keeping a daily journal of my symptoms when I got up in the morning and my prednisone dosage for that day. That way I could track my level of pain and use it when tapering to the next lower dose. My tolerable pain level was 0 to 2 on a scale of 0 to 10. If it was time to taper to the next lower dose and my pain was above 2, I would wait a few days to see if it improved before going to the next lower dose. If it was really a jump in pain, I would increase my dose by half of what I previously tapered down. Each of us are different and it might be a good to have a discussion with your doctor or rheumatologist.
Do you keep a daily journal of your pain and dosage?
I have been on weekly Tyenne self injections since April 14th, 2026. I have tapered from 40mg pred down to 3mg as of August 1st. My GCA dx resulted in my going from 10mg pred with my PMR dx in Oct, '25 up to the 40 mg. I am 109 lbs and have experienced no life altering side effects from either medication and no flares since tapering - PTL! My worst side effects were sleeplessness T/O the night and thin, fragile skin. However; now Walgreens Specialty pharmacy says they don't have we anymore Tyenne in stock, don't know when they will get it in and have reached out to other pharmacies and they have none, either. They sent me their last 2 autopens I received yesterday. I do not know what my options are at this time. I plan to reach out to my M'care pt.D provider today and should hear fromy rheumy today. I think I'll contact the Tyenne manufacturer, also. Anyone else having issues getting the Tyenne?
@kayept
Hello! I have been on Tyenne weekly injections since January 2026. Previously on Actemra. I have been off prednisone since May 2026 and doing OK. My rheumatologist recommended I go back to Actemra until Tyenne is available. The problem is the insurance company (BlueCross/BlueShield) won’t approve. Dr. filed an appeal and we’re waiting on a response. I have one more weekly injection on hand. Dr. Says we will discuss options a few days before next one is due.
@ldietz
Thank you for y our response. I am having my prescription transferred from Walgreens specialty pharmacy to my Part D Medicare's preferred specialty pharmacy. It is still mail order, but, they seem to think they will not have the issues that Walgreens is having getting the medication. Time will tell. I have heard from others in this forum that the Tyenne manufacturer is at fault for not supplying enough of the drug to meet the need. I contacted the manufacturer, Fresiinius Kabi at Kabicare (#833-522-4227). The rep said that "the drug is not in shortage and is being distributed strategically, not at our descretion". I asked several pointed questions re: which pharmacies can get it in stock and he said I'd have to ask the pharmacy. Which I already had done with no definitive answer. So, it was like speaking with a politician who had been directed to say only one scripted answer and had no authority to give any significant, helpful information to the consumer. We are all at the mercy of these drug manufacturers and the 'government' that directs them and protects them. Yes, same for me regarding coverage of Tyenne vs. Actemra.
God speed to you, and all of us, in your efforts to maintain efficacious drug therapy for your\our conditions.
@janb62 they not only were painful but left a terrible bruise, soreness lasting for days. I was taken off Tyenne immediately but my dr had to fight insurance over it. What a mess, now back on Act with no issues
@ldietz my appeal came in timely, and what a relief to ditch tyenne in favor of Act.
@kayept it’s almost too much to comprehend but that mandatory switch to Tyenne kicked off some unpleasantness and for what? Who saved in this? Because I fail to see the benefit but thankfully my dr is an advocate, with a very quick turn around on the appeal process. Positive vibes to you.
@ldietz
My timetable is almost exactly like yours. Stopped prednisone in April 2026. Was previously on Actemra then because of insurance, had to go to Tyenne. Now it's unavailable and Actemra was denied. MD and pharmacy are working on an appeal and I have one dose left. Insurance was pushing for Rinvoq but it's not a biplogic. I pray all who need it can get it in time.
@clendenin
Thanks for your reply. We are now fighting with my insurance to cover Actemra now that Tyenne is unavailable.
What a mess is right! I was on the phone 2 hours this morning. Glad it worked out for you.
@kayept
Update! The appeal process was successful. BCBS approved the exception for Actemra for the next 6 months. Scheduled delivery for 3 months supply (12 injections) to be delivered today. Just in time for my scheduled injection tomorrow. I give all the credit to my awesome rheumatology team at Washington University Hospital in St. Louis, MO. Praying for all of you in the process.