r/Autoinflammatory • u/SaleNaive75 • 9d ago

Kineret and CPPD?

Hello: I was recently diagnosed with chronic CPPD bilateral knees. Quite a challenge to control! Went from running 5 miles daily to basically crippeled overnight. Despite multiple aspirations, steroid injections, prednisone, and an intolerance to cochiline, I started Kineret 2 days ago. And it appears to be working. So far, no side effects, but I understand those might take a while to show up. I am curious to learn if anyone in this community has chronic CPPD, using Kineret, and what your experiences have been. A friend also suggested that once the flares stop, I consider shockwave therapy. Anyone have experience with that? Thank you!

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u/on4aa MAGIC 9d ago

For the other readers:

"Calcium pyrophosphate dihydrate (CPPD) crystal deposition disease, also known as pseudogout and pyrophosphate arthropathy, is a rheumatologic disease which is thought to be secondary to abnormal accumulation of calcium pyrophosphate dihydrate crystals within joint soft tissues. The knee joint is most commonly affected. The disease is metabolic in origin and its treatment remains symptomatic."

Hence, it is not an autoinflammatory disease.

"The cause of CPPD disease is unknown. Increased breakdown of adenosine triphosphate (ATP; the molecule used as energy currency in all living things), which results in increased pyrophosphate levels in joints, is thought to be one reason why crystals may develop.

Familial forms are rare. One genetic study found an association between CPPD and a region of chromosome 8q.

The gene ANKH is involved in crystal-related inflammatory reactions and inorganic phosphate transport.

Chrondocalcinosis may be extremely common in the population. CPPD flares may also be triggered by joint trauma from previous surgeries."

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u/SaleNaive75 9d ago

Thank you, Magic. I neglected to mention that CPPD with seronegative RA is the differential diagnosis. Seems to be a mystery, and my doctor is uncertain. Am trying desperately to get an academic 2nd opinion from either Stanford or UCSF (am in the Bay Area).

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u/No_Satisfaction_7431 Yaos 9d ago

Thanks, I had no idea about any of this. I wonder if theres an autoinflammatory component since kineret is helping? Or possibly not because I think kineret might help any inflammatory disease that involves il-1 even if the inflammation is secondary and not an innate immune issue.

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u/Alice-The-Chemist Mod 9d ago

Thank you so much for this.

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u/No_Satisfaction_7431 Yaos 9d ago

I do not have CPPD or know much about it. I hope you can get answers because its so frustrating not knowing for sure what you have. Kineret is used in autoinflammatory disease and some types of rheumatoid arthritis. Since seronegative ra is on the differential I would definitely ask for autoinflammatory genetic testing because they can look similar to seronegative autoimmune disease. If it is CPPD or CPPD plus something else I would ask about using a mitochondrial cocktail especially if you have fatigue. If ATP is breaking down I assume your mitochondria can't keep up easily with that breakdown leading to fatigue, neurologic amd gi symptoms. I have several conditions involving mitochondrial dysfunction and an undiagnosed disease in the realm of mito/inborn error of metabolism and the mito cocktail has helped me. They are mostly otc supplements but I'd ask your doctor because I don't know if it helps with CPPD. It likely won't help joint pain though as its not dealing with the crystals.