Has Anyone Had a Cytokine Panel

Is there a way for you to post the results and the details about why the Cytokine Panel was ordered? Did anyone interpret the results?

I haven't ever had a Cytokine Panel done. I assume my IL-6 level is now back to normal because I do a monthly infusion of a biologic called Actemra (tocilizumab) which is an IL-6 receptor blocker. I need to ask why my IL-6 level wasn't checked before starting Actemra. You would think a doctor would want to know what these cytokines levels are before starting an expensive medication.

As far as I know, Actemra only targeted my PMR diagnosis. My IL-6 level must have been high otherwise Actemra probably wouldn't have worked as well as it did.

My rheumatologist said he took an educated guess when I asked how he knew Actemra would work.

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"Targeting cytokines has become an important strategy for the treatment of autoimmune diseases. Biological drugs, such as monocular antibodies and soluble receptors, have been developed to block the activity of specific Pro-inflammatory cytokines."
https://www.frontiersin.org/research-topics/63859/the-pivotal-role-of-cytokines-in-autoimmune-diseases
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I would like to know why Cytokine Panels aren't done more often!

My rheumatologist has talked about targeting other cytokines if Actemra stops working. Then he talks about upstream and downstream regulation and cross talk. I have no idea what he is talking about.

I have concluded there aren't single isolated inflammation pathways. It sounds more like an inflammation network of pro-inflammatory and anti-inflammatory cytokines. Some cytokines are both pro and anti-inflammatory. I don't think I will understand it anytime soon.

Maybe that is why they don't order Cytokine Panels because nobody understands them.

Cytokine panel tests aren't covered by Medicare in Australia and they don't come cheap. That's probably why they aren't done much here at least. Maybe they aren't as much diagnostic use as other tests that are covered?

I would guess being on Prednisone would render a cytokine panel unreliable if not completely useless. Even a cortisol level is hard to interpret when a person is on prednisone. I asked my endocrinologist if there would be a need to recheck my cortisol level again. He said cortisol levels are so variable they aren't that useful. I suspect Cytokine levels are the same. CRP and ESR are notoriously unreliable too,

Some cytokine panels seem to be affordable $-hundreds but others are $-thousands. I don't think I will be buying one.

Never heard the word "cykotine" until my daughter was diagnosed with long covid. I just know it's an inflammation marker if labs are high.
Sounds like you and your rheum are on to something!
Are you feeling better? Still on pred?

Agree about testing.....if drugs are doing their jobs, you'd want to see levels at normal.

I see a few on these sites have used LDN as means to regulate microglia and cytokine types of inflammation. Maybe those that were helped just dont come back to these sites. But the ones that have been vocal seem to think it helps.

I have been looking into the use of LDN for auto immune disease in Australia and there are quite a few PCP s and Specialists who are prescribing it for Endocrine disorders, Fibromyalgia and Mental disorders but it doesn't appear to be registered for use in PMR.

hi
please research "cytokine storm" as it is a very important aspect with immune system disorders.
Basically the pro part of the immune system is responsible for causing specific reactions in your body as ur system goes out of the normal balance and hence facilitates bringing the body back to balance. Like the inflammation part it is important to restrict fluid loss (blood plasma etc) by closing swelling and hence limited blood/plasma loss).
Great idea me thinks. For maintain equilibrium in your body, for each pro part released, the immune system has a con side which is responsible for stopping the pro side before it gets to be too much pro action...ie too much inflammation.
If the con side is unable to effectively control the pro side, the pro side specific action causes the body to move further from equilibrium, thus causing an immune system disorder.
A cytokine storm is a term referring to a part or parts of the immune system being way out of wack (PMR) and subsequently causing major problems to various organs in the body that become affected. Prednisone and the newer biologic meds act like the con side of the immune system by reducing or tying up the specific pro side parts that are causing the problem and thus hopefully help the body return to normal equilibrium.
Now that I have been off prednisone for 5 plus months, I found it has taken all that time for my body to return to normal equilibrium or closer to it. I found I had joined an ache/pain of the week or month club. Aches/pains in nerves, muscles, joints and arteries just popped up suddenly and left as sudden a week or so later. All these are gradually diminishing leading me to really believe there is really life after prednisone.
Thru out all my immune system turmoils, I found that walking...walking... walking and moderate exercising has been a definite PLUS. "No pain... No gain!!!