Are others with GCA and PMR on Tyenne Monthly Infusions?

Hi Julie,
Welcome to this forum and I'm glad you are off Prednisone so soon.

You are one of the few who is getting Tyenne since it is so new. There are more people here on Actemra and most seem to have a positive experience. I won't go so far as to say everyone has a good experience.

I have been on Actemra for 7 years. I started out with injections and switched to monthly infusions of Actemra about 5 years ago. I had a couple side effects early on but nothing serious.

I wonder about CRP and ESR not being reliable. Then again, I'm not sure ESR and CRP were ever that reliable because some people with PMR/GCA have normal inflammation markers. My inflammation markers increased when I went more than 6 weeks between Actemra infusion. At least when the time between my infusions was stretched my rheumatologist relied on my inflammation markers. My symptoms got worse so my inflammation markers correlated with my symptoms. Since my inflammation markers increased, my rheumatologist has no plan to stop Actemra anytime soon.

I was on Prednisone for 12 years before Actemra was tried. For me, my personal experience with Actemra has been infinitely better than my 12 years on Prednisone. I haven't had any full blown relapses on Actemra like I did whenever I tried to taper off Prednisone. I haven't needed any prednisone for about 5 years. Actemra has spared me a boat load of prednisone.

I'm glad you joined this forum. I'm interested in your personal experiences with Tyenne. My rheumatologist says Tyenne might be another option for me if Actemra stops working. The body can form antibodies against biologics that render them less effective. Perhaps that is why inflammation markers are still checked.
https://altusbiologics.com/what-it-means-to-develop-antibodies-to-biologics/

@julieahp
My experience has been very similar to yours. I was diagnosed with GCA and PMR in late June 2024. At the time of my diagnosis I had about 6 events where the vision in my left eye smeared out. Some colors would disappear, and other colors would smear out and take their place. I had a lot of other symptoms too, jaw claudication, night sweats, fever, etc, plus all of the joint issues from PMR. I was hospitalized for 3 days where I was given an infusion each day of 1000 mg of methylprednisolone. Then I was on 60 mg of prednisone per day for 6 weeks. I started taking weekly Actemra injections in mid August 2024. Once I started Actemra I started tapering the prednisone.

My treatment has worked very well. I haven't had any flares or symptoms since I was diagnosed. I was able to taper off of prednisone in August 2025. I only had some mild symptoms of prednisone withdrawal as I tapered and after I stopped.

I was 70 when I was diagnosed. I had retired a couple of years before that. I'm really glad I wasn't working while I was sick and being treated. I have been running for almost 50 years, and I was able to keep running a little and/or walking most days since I got sick. I also lift weights and stretch every other day, and have been able to keep doing that. It doesn't seem like I've lost any strength compared to the time before I got sick.

I saw my rheumatologist recently, and for the first time he laid out a plan for me to get off Actemra, assuming everything keeps going ok. He wants me to keep taking weekly injections for another 5 months. At that point I will have been on Actemra for almost 2 years. Then he wants me to taper the Actemra to injections every other week for year, which will mark 3 years of treatment for me. I don't know how likely it will be that things work out that way. I'll just have to wait and see.

For you, at some point you could taper the Tyenne by taking a smaller amount in the infusions.

I think they test out CRP and ESR routinely just to make sure the Actemra/Tyenne is working as expected. I think they test our liver function routinely also to make sure nothing is going wrong.

I know that relapses are possible, but you can't know until you try. Taking one of the biologic drugs for an extended period of time (greater than a year) is the best strategy that is available to us.

Julie - I will reply, however I am on weekly home injectables and just started my first injection this week. So, I know I have a lot to learn. I have had PMR/GCA Vasculitis since 2019 and was only diagnosed with PMR in 2020 and treated for that. I do not have cranial GCA which means I did not have classic GCA symptoms. I kept telling my Rheumy I had non-classic symptoms. She never really paid attention. I finally went out-of-state to the Cleveland Clinic where my GCA was Dx in Nov 2024. They wanted me on Actemra immediately, after waiting 3 weeks following the PET Scan to tell me the results. Kinda one-sided wait and hurry up syndrome, which is classic Rheumy approach based on my 5+ year association with two at home.

I did research and discovered that Actemra had lost it's patten and Tyenne is not only bio-similar it actually has the very same active ingredient. This is not true will all biologics. It was now Dec 2025. My drug plan included Actemra but not Tyenne. I waited till 2026 when Tyenne was to be added to the formulary list. My doctor submitted the Rx on Jan 5th. My drug plan denied it twice before my appeal finally was approved and I was able to pick it up and begin my first injection only 2 days ago, Jan 16th. This is a new definition for "you have to be kidding me" - at one point I even thought about switching to an Rx for Actemra to get it thru the drug plan.

I am getting ready to travel and will need a vacation variance to get the injectables I need for the time I will be away from home. I also am purchasing a travel container to keep the injectables chilled.

I have had minor side effects from my first treatment and I would like to believe that I am already feeling/seeing benefits from the Tyenne. I am also smart enough to not jump to that conclusion. I have a ream of symptoms, edema, anemia, night sweats, mouth pain, IBS-D, neuropathy, cold chills, fatigue plus others which I have been documenting and will continue to see just how many the Tyenne treats.

The damage to date to my aorta is not extensive. I am indeed fortunate that I do not have an aneurism that requires surgery. The damage done is irreversible. I also now have chronic kidney disease which most likely is caused by the vasculitis. GCA without cranial involvement is a silent killer if you ask me.

Thank you for asking your question. I doubt I can answer your questions. I feel sure that I can learn a lot from you and others that respond here, which is why I responded.

@jabrown0407

Hello & thanks for your reply. I, too, started on weekly injections for 2 months and then became afraid that the dose might be too high for my frame (5'1", 95-100 lbs tops) and the syringes are for 130lbs and up, I read. I was having horrible 24/7 dizziness & had to stop driving (and I drive my clients, as I'm a FT home caregiver) and had to add on ENT visits & related physical therapy for extreme dizziness that lasted several months. No idea what caused it. I mask all the time so as not to get a virus which could become serious (from here on out while on Tyenne infusions), as I haven't been hospitalized (many urgent care visits, though) and want to stay infection-free. So...I gladly opted to switch to weight-dosed Tyenne infusions once a month at a local med ctr. Interesting experience of your re: Actemra vs. Tyenne. I'm at Kaiser-Permanente for healthcare (and have always been very happy with it) and as soon as Tyenne was approved (coincidental timing for me), they preferred to use it instead of Actemra, as it was a significantly less expensive option for same estimated efficacy through studies. Two months into my prednisone, I started Tyenne so that I could taper off of Prednisone, which happened slowly over a bit over a year, with no withdrawal effects whatsoever...and then my "moon face" and body appearance disappeared, along with any weight I'd gained. Strangely, people speak of negative corticosteroid effects, but they made me feel absolutely terrific physically and mentally. I got way more work done, my thinking was noticeably clearer and more focused, I could sleep & didn't seem to need as much sleep, just felt terrific. Nevermind what we're all aware of in terms of detrimental effects (will see about next DEXA bone scan). But, very glad to be off Prednisone because of Tyenne's allowing that. [Tyenne is only made in Austria...so 47's tarriffs even on pharmaceuticals have increased its cost.] I have not noted any negative side effects that I can FEEL from Tyenne. Glad for all the lab monitoring, though.

I also had severe night sweats for several months, fatigue, "poor circulation" added to my previous "cold hands and feet" and it finally resolved not terribly long after I started Tyenne (but not immediately). Also had severe leg & foot muscle cramps, but not often now--maybe appearing after I overdo (I'm an overdoer) exercise.

Sorry to heart about your aorta involvement, and glad they can see that it's not extensive. I do see why its symptoms may be more silent than with cranial involvement. During all of my diagnosis expedition, they discovered a very small aneurysm (ACA aneurysm) in my brain, so now I'm being followed by a neurosurgeon. Cannot know whether GCA caused it or how long it has been there; possibly unrelated. But grateful it hasn't grown & hope that remains. Also grateful not to have incurred eye damage (ophthalmologist thorougly checked, monitors) with my 2 warning experiences (they checked me for a stroke & found the small aneurysm). High priority is to safeguard from vision loss or blindness! Those are the symptoms I/we have to act on urgently: Jaw pain (with chewing, etc.); vision disturbances (both like I had before).

I hope you are able to protect yourself well from infections during (and always!) your travel. My mask is my best friend and I am the only person who can protect myself, so.....it has worked so far! Only 1 cold virus to date b/c I did not mask when I knew I should have and voila! It almost derailed my infusion, which my Rheum advises MUST be every 4 weeks on the dot +/- 2 days leeway.

Hang in there all...positive thoughts and hope for future Rx breakthroughs (and research funding).

@dadcue

Hi Mike,
Thanks for your reply. Being a "worry wart" [NOT good for anyone!], I'm glad to hear from someone who has a longer experience with this autoimmune disorder (not sure if you have GCA or PMR or both). Timing in life...often out of our control...glad that Actemra arrived to spare you from more (12 yrs!) of Prednisone. I have read about relapses when stopping Prednisone. But also glad that Prednisone initially saves us from worse, sudden scenarios that GCA presents. How wonderful that these biologics allow us to taper off Prednisone. I was lucky to receive that news at the start of my diagnosis. During my diagnosis expedition, I "saw my life flash before my eyes," & became so worried before they landed on a diagnosis which was much less scary than some other ones they were able to rule out. Still, I pray for longevity--2 severely disabled sons (of 3) depend on me & my hubby. Chronic stress triggers & takes its toll. For now, I'm at the stage where my Rheumatologist recommends Tyenne for the rest of my life, but, as nobody knows what may arise, talks about the possibility of tweaking the dosing...not yet though. Originally, I was under the impression that it would be 2 years, remission & then off Tyenne, but now, that is not what I'm told. Thank you for the link on antibodies forming against biologics--will keep it for future reference. I cannot feel any side effects from Tyenne--nothing bad at all. No change, really. (Unlike Prednisone which made me feel great in every way, but look strange, moon face, heftier upper body, arms on a very small frame). Again, thanks for sharing your experience & wisdom.

@jeff97

Thanks, Jeff. Yes, looks like we have a similar diagnosis & treatment trajectory.
I was diagnosed at 63 and have to work FT until at least 67.
My liver functions (ALT, AST) were incredibly high (254!, idiopathic, tests came back negative for this & that) when I began taking Tyenne, which was worrisome to me (if you read the Tyenne dosing instructions). (I think it may have been due to the antibiotic they gave me after the temporal artery biopsy that was in a class of drugs known to "assault" the liver.) Over many months, & even on Tyenne, my liver fcn tests finally returned to mid-range normal. They also monitor the kidney (creatinine), of course, & that's all been normal so far. On 7/31/24, my CRP was 132, (< 7 normal), ouch. But after a couple of months of treatment went right down to < 1 and now < 3.
Glad you keep up your lifelong good exercise. Healthy! [Although my neighbor who has another autoimmune disease (ankylosing spondylitis) actually exercised so strenuously that she contracted an "overdoing exercise condition" awful immune response. Everyone is different. (AI: Exercise triggers complex immune responses, with moderate activity boosting immune surveillance & fighting infection, while strenuous or prolonged exercise can temporarily suppress immune function, increasing illness risk through stress hormones like cortisol. Both types mobilize immune cells (like neutrophils, NK cells, T cells) & release cytokines (like IL-6), but intense exertion can lead to a temporary "open window" of vulnerability, though regular activity enhances long-term immunity & vaccine response.)
I can easily fast-walk 5-6 miles, hilly terrain, but lack all-important daily consistency with work & life's other time-hogging demands.
I/we have really enjoyed our anti-inflammatory diet & there are so many great cookbooks & other resources out there. Love all the fresh veggies, beans, fruits, etc. For now, content to remain on current Tyenne regimen & monitor my body for relapse symptoms; but don't know if it's normal to have some of the upper back pain & minor leg muscle weakness OR if it is a sign of relapse.
Just aging or flare-up?! The jaw pain or eye involvement would be an urgent medical contact! Thank you for collaborating.

@jeff97

Hi again from Julie. Did you sustain any permanent eye damage from your GCA vision loss episodes? I hope not. I had swirling vision in both my eyes (I think it was both) where I couldn't see because everything was out of focus for several minutes. It was like a blizzard where I couldn't see objects out the windshield (luckily my husband was driving me to urgent care already). Two episodes of this a week apart. But the opthalmologist verified that no permanent damage was done & now optometrist monitors. I also had several weeks of jaw claudication & months of night sweats & joint involvement, esp. shoulders & hips.

@julieahp Without going into detail on why, I see an Infections Disease (ID) doctor who works at a local major teaching hospital. I have been on prednisone off and on since 2020 for my PMR. I talked to him about Tyenne lowing my immune system and my need to protect myself when I travel. He advised that at the level I was taking Tyenne I did not need to protect myself anymore than I did when I was on prednisone. We are not taking it at the dosage of a transplant patient and thus our immune system in not being challenged at the same level. Hope that helps.
My ID doctor did suggest I get a new pneumonia vaccination (Prevenar) since it included newer strains I had not previously had in my last Prevenar. Apparently Actemra/Tyenne patients are prone to upper respiratory problems. You may want to talk with your PCP on this before doing anything.

@julieahp
My vision turned out ok. The IVs of high dose methylprednisolone followed with prednisone took care of all my symptoms.

It sounds like you had some PMR to go along the GCA.

I was sick with PMR for about a year before being diagnosed, and with GCA for about 5 months. I went to 2 doctors during that time, but they were the wrong types of doctors (orthopedist and ENT) and didn't diagnose the diseases.

Are you off of prednisone now? If so, how long have you been off of it.

@jabrown0407
Helpful message. Thanks! Unsure about our comparative Tyenne dosing (maybe the same percentage) but I was warned about infection risk (and it preventing me from getting my monthly infusion and/or worse) and just wanted to lower that risk closer to zero since I can do so by masking in public. For me, it sure beats dealing with any kind of respiratory infection--it works, easy solution. I did ask my rheum. about various immunosupressant Rx(es) and disease scenarios and she did explain the continuum and that I'm/we're certainly not fully immunocompromised for sure. I got Prevnar 20 in May 2025. My strategy with vaccinations is that I get them 1 week before my monthly infusion, hoping that that is the best window for them to have a chance to be the most effective they can be in my situation. Haven't gotten much guidance from docs on this, despite asking.