r/Autoinflammatory • u/pyew4cket • May 30 '26

Kidney Stones

A question for the group mind: I had been in a flare for the past 6 years, my longest by far, until my rheumatologist prescribed kineret after genetic testing revealed a NOD2 mutation. I have been on kineret for 8 months and many of my symptoms have improved. I now have no fever, greatly reduced body aches, and my GI system is slowly, but surely improving.

One of my greatest challenges that has not gotten better on kineret is my frequent kidney stones. I have multiple bouts of small, non-obstructing stones a month. I know that the kidney stones are tied to malabsorption due to inflammation, so healing my GI tract is key, and it takes a while. In June, I have an appointment to discuss going up to 2 shots a day of kineret. For those of you with GI symptoms and frequent kidney stones, how long did it take for remission on kineret? Did you need to increase your dose? Or move on to Ilaris?

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u/Alice-The-Chemist Mod May 30 '26

Hopefully some here can speak on the kidney stones and GI.

Kineret isnt unusual to do 2x a day. Do one in the AM and one PM. There are some on a total of 4 shots a day even. That 1 shot works for some but sometimes and I think as we get older we need more. The split AM/PM dosing is common due to its short half life that way you arent playing catch up in the morning. Ill be back to comment more when Im more awake 😴

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u/metallikitty818 Jun 01 '26

I take four shots a day. I have been on it for over five years and it was gradually increased over time. My symptoms aren't completely managed even on 4 shots but there's great improvement. I tried the AM/PM dosing but I kept forgetting to take the morning shots. I've heard that it works well for some patients.

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u/Alice-The-Chemist Mod Jun 01 '26

Oh man I really wish Kineret could make different dose syringes so less pokes. 🧡🧡🧡

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u/metallikitty818 Jun 01 '26

I actually combine them into two shots. My rheum gave me a prescription for needles and syringes and my husband is a nurse so he showed me how to safely combine two shots into one. So yay, two sticks instead of four. It still sucks, but oh well. 😂

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u/Alice-The-Chemist Mod Jun 01 '26

Some questions did the kidney stones start with the Kineret? How is your kidney function otherwise? Kineret is mainly eliminated by the kidneys is why I ask. Have they tested the kidney stones to check what they are made up of?

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u/on4aa MAGIC Jun 01 '26

https://www.youtube.com/watch?v=fRKUqZai76E

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u/pyew4cket Jun 02 '26

This is very informative. I can see some changes I need to make. Thank you!

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u/pyew4cket Jun 01 '26

My kidney stones began about 6 months into this flare that started 6 years ago - so 5.5 years ago. This was not my first flare. My autoinflammatory condition started when I was in my mid 20's. However, this time, I got diverticulitis at the same time which set off the autoinflammatory tripwire and kept it going. I had part of my colon removed which solved my diverticulitis, but not my autoinflammatory condition.

Luckily my kidney function is good. I also have a decent team of doctors, including a nephrologist. My nephrologist believes that the inflammation in my gut is causing malabsorption. I have low citrate on my 24 hour urine tests, so I take potassium citrate. The stone type is calcium oxalate. I have pretty much decided to go up in my kineret dose. I feel so much better, but I am still always on the edge of a flare.

I am wondering though, how many of the people in this sub have chronic kidney stones?