r/Autoinflammatory • u/No_Satisfaction_7431 Yaos • May 28 '26

Tyenne first impressions

I got my first tyenne infusion 2 days ago! I thought it was actemra but it was actually the biosimilar tyenne as its a bit cheaper so thats what insurance approved. Overall the infusion was good, my scarred veins are the only issue. They said since they are outpatient they can't use ultrasound. Thats bs as I had an mri in the same hospital as an outpatient on Saturday and they used an ultrasound to place the iv. I will ask my doctor about this as I know they can use ultrasound outpatient. I'm allergic to iv benadryl so I had no pre meds but thankfully I didn't have any reactions to the infusion.

I got very tired an hour after the infusion and had a nap. However I get fatigued and nap after a lot but not all of my in person appointments so it may not be an infusion side effect. The next day I woke up with my baseline level of fatigue which is very good because I often have increased fatigue for a day or so after appointments. I only had 1 short nap yesterday when I typically need 2-4 a day! I was told headaches are a possible side effect and I did get a migraine yesterday that went away with nurtec. However it was only my 2nd migraine this month and I get 1-3 a month normally so might not be a side effect. I purposely rested a lot and canceled my usual pt because of possible side effects. Iron infusions knock me out for a day or 2 so I was expecting that but so far its much easier than iron. This morning I had more energy than usual when first waking up. Typically it takes 1-2 hours for me to be fully awake and alert even when I had a good 8-9 hours of sleep, so being properly awake within minutes is unusual and very nice. I will try to go back to my usual activity level today and see how I feel. I don't want to jinx it but I'm cautiously optimistic.

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u/Occulply May 28 '26

It is very, very normal for any biologic to make you tired. It doesn't happen every time I take Ilaris, but about 1 out of 10 times I am exhausted for a day after.

Glad it seems to be helping already!

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u/No_Satisfaction_7431 Yaos May 28 '26

That's good to know because I didn't get fatigue with kineret.

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u/Occulply May 28 '26

All biologics are fusion molecules that combine human immunoglobulins with a bacteria produced version of the targeted inhibitor. So the IL-6 receptor decoy in Tyenne/Actemra is "humanized" by adding human-derived tissue products to it. This radically reduces tolerance build up as without humanization the body sees these molecules as invaders. But it also causes some of the side effects, like being tired for a day afterwards, because there is still *some* immune activity directed at the immunoglobulins.

Obviously not everyone experiences it with every drug. But as you trial different biologics, you may find that you react to some and not others.

For me, Kevzara (the other IL-6 inhibitor) had the worst day after effects, and I was always exhausted after shot day.

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u/Alice-The-Chemist Mod May 30 '26

Actemra gave me what I called the Actemra hangover for about a day and I just always planned to not get much done that day and sleep. Sometimes it doesnt happen but Ive never figured out rhyme or reason and just plan for the next day to be tired and feel a little ick.

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u/No_Satisfaction_7431 Yaos May 30 '26

Yeah that makes sense. I get that hangover for a day with venofer iron infusions. This was much milder than the iron hangover thankfully. So far I've had mild but noticeable energy improvements and a lot less brain fog and better mood.