2021 Treatment update
I am still taking the medication ultomiris, however, in late 2020 I was notified by Alexion (the drug company that makes ultomiris) that the concentration of ultomiris would be changing in 2021. By sometime in 2021 the original concentration of ultomiris will be phased out and will no longer available. The new concentration I would begin getting is 100mg/ml formulation. This new concentration is infused at a different rate and actually cuts down my infusion time to about 40 minutes. It is important to note that the dose of ultomiris has not changed, just the concentration of the medication that is received.
I have received two treatments with the new ultomiris concentration and I am feeling the same as I did with the previous ultomiris concentration. I don’t expect to feel any different or see any changes in lab work, however any change, big or small, can be anxiety provoking, so I thought this was something great to share for other PNH patients to read that may be in the same situation.
I have attached links below if you would like to read further into this new concentration.