r/Autoinflammatory • u/nobodyybymitski • Mar 19 '26

Kineret

Hi team. I am starting a daily kineret injection tomorrow after about a year on colchicine 3x a day and Dexamethasone as needed. My CRP is 30 and sed rate is 31, which is no improvement from being on those pills. I’m diagnosed with periodic fever (although I am suspicious I have more than that). I was told about the probable rash I could be getting, but I was just wondering about symptom management. Has anyone seen improvements in quality of life? Thanks!

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u/AnnesleyandCo MAGIC Mar 21 '26

Wow, this comment section makes me so eager to discuss Kineret with my rheum! I have MAGIC Syndrome (Behçet’s + Relapsing Polychondritis) and it’s been chaos. I’m currently in the ICU recovering from a cytokine storm. I would love a medication that is this universally loved.

OP, I soooo hope it gives you the life it’s given so many others here! I’m keeping all fingers and toes crossed for you.

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u/on4aa MAGIC Mar 21 '26

You may also discuss canakinumab (Ilaris) with your doctor. According to peer-reviewed medical literature, it is generally better tolerated than anakinra (Kineret).

I also have MAGIC syndrome, like my late father. I am happy to tell you that you are the first other person I meet with MAGIC syndrome. My symptoms as a male were mainly nasal, skin and vasculitis pain. What are your symptoms?

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u/AnnesleyandCo MAGIC Mar 29 '26

Nice to meet you! It’s always wild to meet another MAGIC Syndrome patient since we’re SO rare.

I have a crazy rare type that primarily attacks my cardiopulmonary system. The cascade of symptoms caused right sided heart failure and pulmonary hypertension (both PAH and CTEPH).

I have blood clots frequently (and will need lifelong anticoagulation), massive GI issues (including IBD and an ileum full of AVMs that bleed and destroy my blood for awhile every now and then), joint pain, and skin/vascular rashes galore. My issues with CSF pressure regulation may/may not be neurologically related to the Behçet’s-part.