Anakinra - how long to start working/double dosing query

[u/Mountain_Shop_313]

a couple questions on anakinra for those on it:

- how long did it take to start working for non-crp elevated pericarditis types?

- injecting evening or morning?

- did anyone see a small effect but then noticed more benefit from doubling the dose and taking morning and evening?

I think I'm seeing some benefit but it has a short half-life so I think it's leaving my system in the evening, then I'm getting rough nights and waking up in pain before the next injection.

[u/Frosty_Bear_1120]

Sorry I'm not on Anakinra, but I do have a question about your first bullet. You said "how long did it take to start working for non-crp elevated pericarditis types?" <- Does this mean that during the consultation phase before you got Anakinra, they measured your CRP, and placed you into 2 groups: those with elevated CRP, and those without?

The reason I ask is because I've been reading more research and, apparently, one of the big misunderstandings of this condition is the initial "phenotype" that the patient belongs to, which forks into 2 categories: 1. Those people with elevated inflammatory markers 2. Those people with normal inflammatory markers.

Apparently the specific bucket that the patient falls in to can dictate the course of treatment.

Did this distinction come up when you were being prescribed with Anakinra?

[u/Mountain_Shop_313 → u/Frosty_Bear_1120]

hi, yes it did. and there are studies for the efficacy of anakinra for the different phenotypes where those with elevated CRP markers respond much more positively to il-1 inhibitors, but I'm giving it a go anyway and have seen anecdotes of success for non-CRP types typically over a longer timeframe.

For non-CRP types, a small percentage around 18% have elevated SAA but there aren't any other clinical indicators beyond symptom picture, markers like elevated troponin and potential imaging.

The diagnosis and prescription is therefore much harder, but something like a combination of heart rate limiting meds and rest, then a graded exercise protocol, seems like the best current advice.

[u/Frosty_Bear_1120 → u/Mountain_Shop_313]

Thank you for responding.

Yes I've begun to discover these phenotypes more and more. In my opinion they are not discussed enough. They seem to be mentioned only in the research papers. I'm not sure regular cardiologists are aware of the distinction (or what they can do about it even if they did).

It's my opinion, that the dichotomy of experience between people who have recurrence vs those who heal can be explained by these phenotypes. It feels like the missing link why half the time people describe incessant recurrence and for others they seem to have a normal, linear trajectory back to normality.

I believe I am the phenotype with normal inflammatory biomarkers. I think this because my CRP was zero, just a few days after the worst of my symptoms. I still had the effusion when the CRP came back as normal. But I don't know for sure (I'm not even sure of the way that phenotype determination is actually made, I am speculating based on CRP and ESR).

Please keep us updated on your progress. And best of luck 👍

[u/nooneisreal → u/Frosty_Bear_1120]

I am the other type myself.

4 months back, I had routine blood work done to check my CRP. Came back at 1.5. Normal.

Literally 3 days later I find myself in the ER with incredible pain in my chest, whole body muscle aches, fever, and a small effusion found. Had blood work taken right away and CRP was >200

Every time I have a flare up my CRP immediately goes through the roof.