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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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@jeff97
So glad your vision is ok, after your scares. My diagnoses came within a week of each other--PMR & then GCA because of the hallmark symptoms over 3 weeks that I hadn't mentioned to them prior--until I thankfully read about & identified 100% with! I tend to downplay pain & don't like to complain even to doctors--big mistake this time around! Two trips to urgent care set off internal consults with various specialists & various imaging modalities (that's how they found my small brain aneurysm while looking for stroke signs), which turned out to be a way better route than just going to see my family med doc. They screened me head to toe, brain, aorta, organs, etc.--very thorough, thankfully! It took over 2 months to be able to get in to see a rheumatologist--in short supply, even in major metropolitan areas. With the PMR Diagnosis, the urgent care internal consult specialists started me on 20mg Prednisone, but then I got worse fast (could barely walk) & confided about the GCA symptoms & they immediately bumped it up to 60mg. I don't know how long PMR had been brewing before I could barely walk--but the descent was quick to the crash. I know I was slightly aware of muscle weakness, stiffness, achiness & changes & odd symptoms for me, but ignored them over the summer. I remember at least 3 weeks where it was really painful to chew & I was just going to switch to yogurt/soup, etc, until it resolved, ha! After the Dx of PMR came, I read about it and, thankfully it mentioned GCA being a common partner Dx or I wouldn't have told the docs that I'd had both the classic jaw & eye symptoms. I took Prednisone 7/31/24 - 6/19/25. So, been off Prednisone for 7 months now. No withdrawal effects from Prednisone (slowwww taper). Tyenne started 9/11/24: 2 months of weekly injections and switched to monthly infusions (weight-dosed) 12/6/25. No side effects from Tyenne that I can discern.
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1 Reaction@julieahp My ID doctor said I could do my Tyenne one week after the vaccination. I actually had 10 days between them because I had to go thru Drug Coverage trying to deny the Rx. Never fun.
I am retired and not out around people much, so my exposure is not what yours is. That can have a minus for me, by you being exposed your resistance builds. Mine gets lazy when exposure is low. I suspect if I were driving people around I would mask up as well.
I do plan to ask my ID doc the next time I need a vaccination. I am not sure of the timeline I should use because I take weekly Tyenne injections. For now I am not worrying about that - I will ask when the time is right.
@jabrown0407
Very curious as to what your non-classic symptoms of GCA were if you are willing to share.
@caroljeand They were mainly non-classic symptoms of PMR not GCA Vasculitis. The only non-classic symptom of GCA was I had absolutely no cranial problems. No headaches, no eye involvement, no tender or sensitive scalp - nothing. Very rare but it does happen. My GCA symptoms were mainly tossed in the PMR bucket or not a Rheumy problem. My onset was caused by an adverse reaction to a drug so several symptoms were dismissed by several doctors. I've had neuropathy since 2019 that no doctor ever took an interest in as soon as they determined I was not diabetic or pre-diabetic. Trust me I live in Dallas Texas and we have two major medical schools within 10 miles of each other. I have a board choice of well-educated highly skilled doctors. Specialists are so single focused that it is often hard to get them to take their blinders off.
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1 Reaction@jabrown0407
My neuropathy was "evaluated" by a neurologist and was dismissed the same way. An EMG and nerve conduction study was done which confirmed "diffuse neuropathy." I never complained about my arms being numb but the nerve conduction study confirmed neuropathy was present in my arms as well.
I asked what was causing the neuropathy. As I recall ... the answer was, "We don't know so it is idiopathic since I wasn't diabetic." I remember thinking if they didn't know what caused the neuropathy then they probably didn't how to stop the neuropathy.
Since getting off Prednisone, I swear the neuropathy is improving but I'm not completely sure. I mentioned doing another nerve conduction study to my primary care doctor to see if it was improving. The answer I received was, "As long as it is getting better there isn't any need to do another nerve conduction study." I guess I will never know why I have idiopathic polyneuropathy.
https://www.hopkinsmedicine.org/neurology-neurosurgery/specialty-areas/peripheral-nerve/idiopathic-polyneuropathy
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I even have foot drop from polyneuropathy that they say won't get any better at this stage. As a patient with foot drop they gave me an orthotic brace to wear to hold my foot up when I walk.
@dadcue I have had nerve conduction test due to it thanks to my neurologist - I consider that test the lie test 'cause I would tell them anything they want to hear to get them to stop. I had the test several years before due to other symptoms, totally unrelated. It was after this conduction test that the neurologist suggested I request a vasculitis test, I did, my Rheumy's NP ran an ANCA and it was negative - that was in 2023. Unfortunately, GCA Vasculitis is not an ANCA Vasculitis, and my medical education had not covered that detail so I did not know enough to pursue it further. I received most of my historical medical education from Reader's Digest - then it was Dr Google and now it is Dr AI.
@jabrown0407
I just wonder if we all should be tested for GCA even though we don’t have the classic symptoms. This may sound strange but when the shower spray hits my lower arms it is painful. I dismiss it as to the fact I have no fat protecting my veins from the impact, but just wonder if it’s something else….And my veins on my hands protrude.
@caroljeand There are no blood test for GCA Vasculitis. It requires a CT, MRI and/or PET Scan to Dx GCA with no cranial symptoms. Go for it if you can talk your doctor into it. In retrospect I wish I would have written my symptoms down and presented a rather long note to my Rheumy explaining my concerns. She would not have been able to dismiss them in the same manner that she did when I only spoke of them during appointments - a very expensive health care mistake. I am a strong advocate for myself and in this situation I failed me. I am working with the hand I am delt and trying not to look back except to benefit from the 20-20 view.
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1 Reaction@jabrown0407 I will be sure to mention it to her on my next visit. Thank you!
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1 Reaction@jabrown0407
Have you had any surgery in the locale of the neuropathy?
I had hammertoe toe surgery and when the bandages came off I had terrible tingling in an adjacent area. I’ve had the EMG and have been told I do not have neuropathy and that podiatrist told me it was coming from my back. I never believed him.
I know his surgery did something to a nearby nerve to cause the sensation of tingling and numbness.