Are others with GCA and PMR on Tyenne Monthly Infusions?

@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/

@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.

@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).

@julieahp
Hello. I am interested in your experience with Tyenne. I have GCA and started on the usual 60 mg prednisone, 3 high dose pred infusions, then added Actemra injections. I had to switch to Tyenne injections because of insurance and have used it only once but it was quite painful compared to Actemra . When jabrown said
"you have to be kidding me" in regarding injection, I'm not sure what she is referring to. I,too" am small at 102 to 104 lbs and wonder if the needle is going into muscle instead of sc. The directions say not to pinch. So my question is is the infusion an easier way to go? My rheumatologist says the infusion takes 2 hours but that seems a very long time.

Anything you can tell me is appreciated . Jan

@janb62
Hi Jan. Glad you reached out. Yes! The infusion is an easier way to go, in my humble opinion. It takes 1 hour, once you're all "plugged in". They prefer to schedule 2 hours, just in case...Also, they take your blood labs right before they infuse you, so you don't have to make an extra trip to have your blood labs drawn in between your weekly injections. Where I go, they just got brand new infusion recliners that have massage and heat--yippee! My doc mandates every 4 weeks +/- 2 days only leeway for infusions. They've scheduled me out through Dec. 2026. The medicine--Tyenne--must be mixed up by the pharmacy the day of the infusion and taken to wherever you're being infused and it must be used up within a certain amount of time that SAME day! So, no cancelling unless you're "hit by a truck"! It is not the same in terms of storage as the syringes of Tyenne, which have a different set of storage rules. I have never felt any side effects, nor any reactions to the infusion at the site of entry or anywhere. One thing I do is drink obscene amounts of water the DAY and evening before my infusion so that they can more likely find a good vein on the first poke, whether newby or experienced person. It makes a HUGE difference to you and them for you to be well hydrated. We should all drink more water every day anyway. I do NOT mind the monthly IV start or anything in the process. Nursing staff so nice, as well. I much prefer it to taking the responsibility of jabbing myself weekly, but only came to this decision after trying it out.

I was dx'd with PMR & GCA at end of July 2024. Started on 60mg Prednisone (no hd infusions) right away, end of July 2024. Then Tyenne was approved/introduced end of Sept 2024, to allow me to slowly start my taper off Prednisone. Had WEEKLY home Tyenne injections for about 3 months and then decided to switch to MONTHLY Tyenne infusions at the end of Dec 2024. Stopped prednisone altogether, after slow taper, June 18, 2025.
Here was my reasoning to switch to monthly Tyenne infusions. Like you, I am petite, 100 lbs, 5'1". I read every word in the Tyenne injection disclosure that came with the syringes. I discovered that it was formulated for people 130lbs and up. That concerned me, along with the fact that I didn't enjoy injecting myself and worried about doing something wrong or losing the contents of a syringe--$750-ish/syringe and not replaceable if I make a mistake with an injection. And, yes, the jabs hurt me also. I started to dread them. Also, I went through several months of incapacitating dizziness around the outset of my injections and wondered if the high dose for my frame could have contributed. Had to stop driving for a month, so dizzy. After about 4-6 months (can't recall), the dizziness gradually went away. I have never had vertigo or dizziness in my entire life! And it wasn't that "ear crystal" thing either. My docs (ENT) and vestibular PT (referral to improve dizziness situation) person confirmed that, after I had to seek medical advice. And I had not been sick with any virus that I was aware of, either. Anyhoo, I will never know what caused the aforementioned, nor know whether to implicate a Tyenne dose for a 130-lb & above person or not. I understand that some medicines or administration methods of medicine are dosed by weight and some are not. But Tyenne administered intravenously by infusion IS dosed by weight. So, as soon as I started with my monthly infusions, I got the dose for my 100-lb frame. [BTW, when I was getting sick with PMR/GCA & didn't know what was wrong, my weight dropped to 90 lbs--too light for me, but I couldn't help it.] Steroids took care of that! Unlike others, I felt great on steroids, but was glad to get off them because of knowing their nasty side effects. Hopefully, my next bone scan won't show their damage. Ok, well wishes for your decision on method for administering Tyenne. Do you mind sharing where you live? I live in the Seattle area & have Kaiser-Permanente for my care--very happy with it.

@janb62
Hi Jan. Glad you reached out. Yes! The infusion is an easier way to go, in my humble opinion. It takes 1 hour, once you're all "plugged in". They prefer to schedule 2 hours, just in case...Also, they take your blood labs right before they infuse you, so you don't have to make an extra trip to have your blood labs drawn in between your weekly injections. Where I go, they just got brand new infusion recliners that have massage and heat--yippee! My doc mandates every 4 weeks +/- 2 days only leeway for infusions. They've scheduled me out through Dec. 2026. The medicine--Tyenne--must be mixed up by the pharmacy the day of the infusion and taken to wherever you're being infused and it must be used up within a certain amount of time that SAME day! So, no cancelling unless you're "hit by a truck"! It is not the same in terms of storage as the syringes of Tyenne, which have a different set of storage rules. I have never felt any side effects, nor any reactions to the infusion at the site of entry or anywhere. One thing I do is drink obscene amounts of water the DAY and evening before my infusion so that they can more likely find a good vein on the first poke, whether newby or experienced person. It makes a HUGE difference to you and them for you to be well hydrated. We should all drink more water every day anyway. I do NOT mind the monthly IV start or anything in the process. Nursing staff so nice, as well. I much prefer it to taking the responsibility of jabbing myself weekly, but only came to this decision after trying it out.

I was dx'd with PMR & GCA at end of July 2024. Started on 60mg Prednisone (no hd infusions) right away, end of July 2024. Then Tyenne was approved/introduced end of Sept 2024, to allow me to slowly start my taper off Prednisone. Had WEEKLY home Tyenne injections for about 3 months and then decided to switch to MONTHLY Tyenne infusions at the end of Dec 2024. Stopped prednisone altogether, after slow taper, June 18, 2025.
Here was my reasoning to switch to monthly Tyenne infusions. Like you, I am petite, 100 lbs, 5'1". I read every word in the Tyenne injection disclosure that came with the syringes. I discovered that it was formulated for people 130lbs and up. That concerned me, along with the fact that I didn't enjoy injecting myself and worried about doing something wrong or losing the contents of a syringe--$750-ish/syringe and not replaceable if I make a mistake with an injection. And, yes, the jabs hurt me also. I started to dread them. Also, I went through several months of incapacitating dizziness around the outset of my injections and wondered if the high dose for my frame could have contributed. Had to stop driving for a month, so dizzy. After about 4-6 months (can't recall), the dizziness gradually went away. I have never had vertigo or dizziness in my entire life! And it wasn't that "ear crystal" thing either. My docs (ENT) and vestibular PT (referral to improve dizziness situation) person confirmed that, after I had to seek medical advice. And I had not been sick with any virus that I was aware of, either. Anyhoo, I will never know what caused the aforementioned, nor know whether to implicate a Tyenne dose for a 130-lb & above person or not. I understand that some medicines or administration methods of medicine are dosed by weight and some are not. But Tyenne administered intravenously by infusion IS dosed by weight. So, as soon as I started with my monthly infusions, I got the dose for my 100-lb frame. [BTW, when I was getting sick with PMR/GCA & didn't know what was wrong, my weight dropped to 90 lbs--too light for me, but I couldn't help it.] Steroids took care of that! Unlike others, I felt great on steroids, but was glad to get off them because of knowing their nasty side effects. Hopefully, my next bone scan won't show their damage. Ok, well wishes for your decision on method for administering Tyenne. Do you mind sharing where you live? I live in the Seattle area & have Kaiser-Permanente for my care--very happy with it.

@julieahp

All good reasons for getting an infusion. I have great veins. They let a nursing student get some practice at my last infusion. I agreed --- she missed --- I let her try again because I was a student too a long time ago. I kept my mouth shut but I was willing to give her some suggestions. She was being supervised and only lacked some confidence.

I'm jealous about your infusion recliners. I get some benadryl and tylenol 30 minutes before my infusion for any reactions. I usually fall asleep even though the recliners aren't very comfortable.