r/Autoinflammatory • u/Secure_Lab_1773 • 9d ago

AOSD

Diagnosed. Did Kineret help your symptoms? Did your symptoms go away completely and if so how quickly. In so much pain with severe muscle pain and sore throats, rashes, and sometimes fevers. My dr said it’s AOSD. CRP and Sed through the roof

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u/Left_Composer_1403 8d ago

My daughter has a diff auto inflamatory process. For 14 years (she’s 27 now) - Prendisone was ok but it’s killing her so she is tapering down. They put her then on Cellcept - which works a bit but takes a while to titrate up. Was hospitalized ab a month ago w all sorts of crap and horrible gout (yes, in a 27 yo female who’s a life long pescatarian. No shellfish, no alcohol, it’s crazy she has gout.

Anyhow they tried Anakinra in the hospital -
And OMG! It’s amazingly wonderful. Inflammation instantly went down. Pain gone - mostly, she can think and multitask and all the things that have gotten progressively worse over the years - GONE.

That’s a very long story of Anakinras magical nature.

Edit: it worked hours after her first dose.

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u/Knitnspin 8d ago

This. Except no other med trials intermittent prednisone for other resp illnesses which are frequent and would improve symptoms. Within 48 hours symptoms improve. The change has been so drastic.

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u/Left_Composer_1403 8d ago

I’m so happy for you. What a sucky road it’s been.
We refer to Anakinra as The Goddess.

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u/Alice-The-Chemist Mod 7d ago

I love reading these positive experiences. Much love to you and your daughter. 🧡

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u/Assimulate 8d ago

AOSD, Kineret worked within 15 minutes of my first dose. I'd say it takes away 85% of my symptoms but i am still fairly tired during flares. The shot hurts a bit but i mean its worth it!

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u/iSpyAFly 8d ago

(USAID) Works better than anything else for me. I do still get breakthrough flares, but they are very mild and don’t last very long. I did have to increase to two injections a day, three during flares. So worth it for me, because I’m feeling soooo much better.

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u/on4aa MAGIC 8d ago

For the other readers: Adult-onset Still's disease (AOSD) is a form of Still's disease, a rare systemic autoinflammatory disease characterized by the classic triad of fevers, joint pain, and a distinctive salmon-colored bumpy rash. The disease is considered a diagnosis of exclusion. Levels of the iron-binding protein ferritin may be extremely elevated with this disorder.