@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).

@jabrown0407
Very curious as to what your non-classic symptoms of GCA were if you are willing to share.