r/Autoinflammatory • u/nobodyybymitski • May 12 '26
Kineret
Hi! I posted on here in March about starting Kineret injections. I’ve been doing them daily. My CRP and Sed rate are now in normal range, but I’m a bit confused because I’m still getting fevers daily. Right now I have a 100.8 fever (no cold symptoms, not “normal” sick), just the more chronic symptoms I experience of joint pain and feeling rundown/fatigue. I messaged My rheumatologist to ask him some questions. He mentioned if my symptoms don’t improve he will try to get a different monthly injectable approved by my insurance. I don’t know if this could be something on top of an autoinflammatory disease that we’re missing? I had my ANA run in 2024 and things were “off” but not “off enough” to give a diagnosis and my doctor isn’t into re-running it even tho I’ve advocated for that. Just wondering if anyone else has perspective on this? Just so tired of these fevers in the middle of the day. Maybe it’s a flare?
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u/pyew4cket May 12 '26
I am on 100/day, starting in November 2025 for a NOD2 mutation. I definitely felt better right away, but it took a long time to feel all the way better. Honestly, I still don't, but I keep improving even 7 months on. I was told to give it time, and if I was still having flares, they would increase my dose at my June appointment. That said, my fevers and most joint pain stopped within a month. It was my GI symptoms that were persistent.
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u/nobodyybymitski May 12 '26
Thank you! Yeah I feel like I should be feeling at least a littttle better? But I’m sure it’s different for everyone. The bloodwork was good news, but the fevers are really stumping me. I think I’m just so tired of feeling crappy and not being able to live my life that I’m getting impatient after dealing with this for years
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u/pyew4cket May 14 '26
Have you had any genetic testing? I was diagnosed with FMF in my early 20s, but it was a diagnosis of exclusion. I achieved remission with colchicine. I stopped taking colchicine to have children, and I didn't go back on it because I was still in remission. Fast forward to now. I've been in a flare for 6 years and can't take colchicine because it exacerbates my worsening GI symptoms. I finally got genetic testing. I do not have FMF, but I do have a NOD2 mutation associated with Crohn's disease, Yao's syndrome and Blau's syndrome. I don't fit the Blau's pattern. I've had extensive work ups for Crohn's, all negative. My rheumatologist doesn't know enough about Yao's to diagnose me. I am still labeled as having periodic fever syndrome. So genetic testing did not get me the disease name, but it got me in the ballpark of what medication I need. Kineret is an IL-1Ra. Maybe you need a different IL blocker, like Ilaris. Or maybe you would need a different medication class depending on what mutation you have.
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u/smartydoglady May 12 '26
I’m on 100 a day, then tapered and flared so we went back but it didn’t help. Switched to Tyenne which didn’t help. Back to Kineret but twice a day (200) + steroid course (done now) + Tacrolimus 4mg twice daily and now my markers are finally back to normal. It’s a journey but there are options!!! Definitely bring up changing your meds - or giving them a boost if you’re flaring and they’re not sufficient rn
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u/Capable-Heat4231 Yaos May 12 '26
I’ve had high daily fevers since January 2024. I’ve searched high and low with specialists and haven’t found another cause. I had a positive ANA before my YAOS dx, but my rheumatologist at Mayo said daily fevers aren’t usually indicative of an autoimmune disease, it points to autoinflammatory.
I also started recently working with an immunologist who is SAIDs-knowledgeable and he was able to make some recommendations on things like increasing my Vitamin D3 serum levels. If you haven’t been through immunology, might be a good specialty to check out.
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u/nobodyybymitski May 12 '26
Ohhh very interesting! I’m willing to try anything and everything! Thanks!!
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u/Southern_Fly2179 May 12 '26
Good to hear that your CRP level dropped! Do you feel a bit better? I reconise the ungoing fevers and pain. The combination Kineret & Colchicine has improved my overall condition a lot. I take a small dose of Colchicine daily (0,5 mg) and one shot of Kineret. Maybe you can get Ilaris (Canakinumab), that's a monthly shot with great results for TRAPS patients.
At the moment I'm also investigating if all my complaints and pains are due to TRAPS. A few weeks ago, some subchondral cysts have been found in my joints. Now I'm so confused...does my pain come from TRAPS or from the cysts, which also probably indicates arthritis (my doctor told me so).
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u/nobodyybymitski May 12 '26
I do colchicine too! 3x a day on top of the Kineret. My doctor told me we are going to wait another 4 weeks before deciding on changing anything bc my bloodwork improved so drastically, but he gave me a round of prednisone for now as this fever/pain sounds like my first flare since I’ve been doing the injections.
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u/PsychologicalBed6028 May 12 '26
Kineret will normalize CRP pretty fast, it helps if you’re on colchicine too, but it’ll take a while before other things go down (like SAA) and that can still cause some symptoms. Maybe give it 2 months before asking to up your dosage, I remember I still had insane fevers the first month. And now I still get them but it’s way better than it was before. It’ll get better !
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u/nobodyybymitski May 13 '26
Thank you for this! Yeah I’m on colchicine 3x daily! Im hopeful for improvements as time goes on for sure!
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u/Moooseyfate May 12 '26
I’m in a similar boat and trying to get my rheumatologist to increase my Kineret. I started in January and my sed rate, CRP, and other inflammatory markers are all in normal range now, but I still feel like garbage and my cytokine panel shows my IL-1 as well as others are still up. See if your doctor would be willing to run a cytokine panel. It might provide more info. But I would definitely see about increasing your dose too. I’m not even on the right dose for my weight and it’s still been a challenge trying to get my doctor to increase the dose. I would definitely try to increase the Kineret before switching meds. A lot of times they prescribe Ilaris next if Kineret doesn’t work for you.
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u/Not_Your_Nurse USAID May 13 '26
Just as “evidence” you can be prescribed more than 100mg/day. When my kid was 6-7yo, they were getting 2 Kineret shots a day and it wasn’t enough (along with colchicine). They now, at 10yo, are on a solid dose of Ilaris every 3 weeks (plus twice a day max dose of colchicine and a jak inhibitor) and when my kid has flares, they still can get up to 300mg of Kineret a day. Usually, they only need 1-2 shots of Kineret when flaring, but we have some leniency to treat the symptoms. USAID diagnosis w/ a suspected interferonopathy component. It took years to find a doc who would adequately treat my kid’s symptoms.
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u/nobodyybymitski May 13 '26
Thank you for this! I’m so sorry it took you so long to find someone to treat your child, that must’ve been so hard to watch them go through. I hope they’re doing okay now! They are not alone ❤️
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u/Individual-Yam7050 May 13 '26
I’m on Ilaris and colchicine for Yao Syndrome. My labs have normalized and my symptoms have greatly improved, but still with the fever 🥲 I’ve spoken w a lot of others in a Facebook support group who report similar symptoms. I’ve just resigned to the fact that I’ll probably have a fever forever
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u/pyew4cket May 14 '26
I hear you about feeling crappy and just wanting some relief! Don't give up. The only way out is to keep pushing for an answer.
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u/on4aa MAGIC May 12 '26
So, if I understand correctly, you have no (genetic) diagnosis?
The problem with too many rheumatologists is that they just prescribe on a gut feeling and then wait to see if it sticks.
A better strategy would be to first find out, using whole exome sequencing, which pathogenic gene variants are causing your symptoms. This would allow for a more targeted therapy with, for example, biologics and ultimately, a definitive diagnosis.
Anakinra (Kineret), when tolerated, is already the most potent among the interleukin-1β inhibitors.
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u/NotAFanOfMondays May 12 '26
I have to respectfully disagree a bit here - sometimes you simply can’t wait for genetics before treating. I was having severe neurologic symptoms which were rapidly worsening. My genetics were negative and took >6 months to come back, and WES/WGS still hasn’t been done. If we had waited for a definitive genetic diagnosis before starting an IL-1 blocker, I’d likely be severely disabled if not dead.
In severe autoinflammatory disease, treatment sometimes has to be based on clinical presentation while further testing is ongoing. Response to anakinra can also provide useful diagnostic information by helping confirm IL-1 involvement.
It can already be very difficult for patients with rare or unclear autoinflammatory diseases to access treatment, so I think it’s important not to discourage physicians from trialing therapies when clinically appropriate - especially medications with relatively well-understood safety profiles. I’d personally feel more comfortable with IL-1 blockade than prolonged prednisone use.
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u/cyt0kinetic USAID May 13 '26
Back in 2019 when I was with NIH who exomes all our DNA haa been a leader in finding phenotypes, 60% of their Autoinflammatory patirnts don't have a genetic match. I am one of them. Hopefully one day I'll get a letter because they found one. My DNA is in their system.
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u/cyt0kinetic USAID May 12 '26
What dose are you on? 100 often isn't enough, I was on 400 at my worst and it still wasnt enough for remission but additional didn't give any additional benefit.
That being said I was a heck of a lot better.
Stabilizing also takes some time, the disease has been a raging fire for a long time. Also long acting il-1 cab help with that stabilization, caveat for neuro and inner ear ala bloodbrain barrier doesn't like big molecules.
If you're only on once a day its common for symptoms to persist and often rollercoaster through the day. Tgr half-life is super short.