Forced to try Anakinra before Ilaris
Just as the title says, my partner has AOSD and is being forced to try daily injection Anakinra before he is allowed to try the FDA approved once monthly Ilaris injection.
He’s been on Prednisone for 6 months now (currently 40mg) and that is doing a number on his body. They made him try Methotrexate as a first attempt at treatment and that did NOT work for him. It resulted in elevated liver enzymes. He’s continued on just Prednisone while we worked to try and get approvals on next steps.
So we asked his Rheumatologist if he could try Ilaris and because of the weird system our medical
Provider has set up (Kaiser) they are making him try Anakinra first. We are grateful to FINALLY be trying a biologic but really wish we had more say in what he could try next. I mean, Ilaris is FDA approved to treat AOSD and it’s a once monthly injection. Seems like a no-brainer to me what he should be trying next. It’s frustrating.
Has anyone else tried both Anakinra and Ilaris and have feedback to share? I’m curious as we take this next step on his healing journey. Wishing you all well!