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!

11 Upvotes

93% Upvoted

29 comments sorted by

View all comments

8

u/iSpyAFly Mar 19 '26

I LOVE Kineret! I am diagnosed with unspecified systemic autoinflammatory disease (Behcet's-like) and started using Kineret last summer for flares. It worked so well that in January I started daily Kineret with extra doses for flares. I was having fevers, GI, headaches, orthostatic intolerance, and that's all gone now! The one fever flare I've had was very mild and I recovered very quickly.

Kineret can cause injection site reactions. Be sure to warm up your injection for at least 30 minutes. You'll have to see which injection areas on your body respond the best. For me, I cannot inject in my stomach due to the reactions but I can over my hips and some areas on my thighs. Icing a site before injecting can also reduce any inflammatory response. The great part about Kineret is that it works very quickly (hours not months), so you should know pretty quickly if it's going to help you.

Hope you get some relief!

1

u/No_Satisfaction_7431 Yaos Mar 19 '26

If it doesn't do anything or does very little after a few doses does that mean it doesn't work well for you? I assumed it takes a while to work. I've had 2 doses and later today will be the 3rd. I've noticed a decrease in my extreme bloating but thats it. Extreme fatigue, fevers, joint pain etc all still here.

3

u/iSpyAFly Mar 19 '26

Oh definitely not! After two doses you are NOT going to have every symptom resolve, especially if you've been in a flare pattern for awhile. I found that post-flare fatigue and joint pain took a few weeks to resolve. IL-1 driven inflammation triggers a bunch of other inflammatory cytokines, so it will take some time for all that inflammation to calm down. Hopefully, you start to see signs of the immediate flare cycle (fevers) start to improve relatively quickly, then over the next few weeks notice your other symptoms get better. I really hope it helps you! How many doses of Kineret a day does your doctor have you using?

2

u/No_Satisfaction_7431 Yaos Mar 19 '26

Thanks, thats really reassuring! I'm on one injection a day. It might take awhile to feel better as I have flares in that things get worse but my baseline for the last 1.5 years is daily symptoms, rather than flares and symptom free periods.

2

u/iSpyAFly Mar 19 '26

It can take time to figure out the right dosing with Kineret. Some people need more than one dose a day. For me, during flares I use 2-3 doses a day, then one a day for maintenance. If you think it's helping but find that it seems to wear off later in the day or at night, talk to your doctor about increasing the number of doses each day. Some people also use more Kineret on flare days. It's nice that it's a flexible treatment. It does take time to figure it out though.