@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.