JAK1 Inhibitor Rinvoq Quickly Returns Severely Ill ME/CFS Patient to Health - Parts I and II

[dr. Arf]

Here is the personal story of the lady that is in remission from Rinvoq.
- Came out on Health Rising today

It’s the same anecdote as that came up in the thread ‘filgotinib Jak/Stat-inhibitor’

Very interesting what she mentions about cytokine-storm.
- what strikes me as odd is that normally a cytokine storm comes with fever, high heart rate, etc.

Possibly linked to T-cell/Nk-cell exhaustion as there was no real high fever reaction ?
– just guessing because that information is lacking

https://www.healthrising.org/blog/2024/11/20/jen-rinvoq-chronic-fatigue-recovery/

 

[Sushi]

Here is the personal story of the lady that is in remission from Rinvoq.
- Came out on Health Rising today

What a brilliant story! Somehow it seems qualitatively different from other remission accounts – perhaps because it is a “global” remission and has lasted so long, perhaps because this fits with the research hypothesis from Doctor Robert Phair on the Itaconate Shunt. I am impressed and very encouraged to read of this level of recovery in a severe patient,

 

[dr. Arf]

Important distinction between different Jak/Stat-inhibitors.and their targets Areas (and method of action)

Different Jak/Stat-inhibitors Will inhibit different cytokines (more strongly)

https://x.com/immunofever/status/1829436311020699831?s=61&t=sKmyvHx_RteidWxD2gpxsA

 

[Sushi]

Important distinction between different Jak/Stat-inhibitors.and their targets Areas (and method of action)

Different Jak/Stat-inhibitors Will inhibit different cytokines (more strongly)

Yes, very important. But also very important and unfortunately not well understood is what else these JAK inhibitors do. Do they affect NK cells, might they close the Itaconate Shunt as hypothesized by Dr. Phair? There is a great deal about JAK inhibitors that researchers to not yet understand and when we try to understand Jen's story these questions come into play. Yes, her cytokines normalized but there may well be other factors that are unknown. When she publishes her case report with her before and after lab values, we will have more data that may help us understand better what actually happened in her.

 

[Cort]

Amazing story! After 18 years of being 90% bedbound Rinvoq returns Jen to health. She seems to have tried virtually everything under the sun (unsuccessfully) but came upon Rinvoq after tests showed high levels of cytokines.

https://www.healthrising.org/blog/2024/11/20/jen-rinvoq-chronic-fatigue-recovery/

 

[junkcrap50]

Where did she get her cytokine panel done?

 

[Mary]

Here is Part II of this saga on Health Rising:

https://www.healthrising.org/blog/2024/11/22/jen-jak-inhibitors-chronic-fatigue-syndrome-long-covid/

 

[Mary]

Where did she get her cytokine panel done?

I'd like to know the same thing. In Part II of this story, @Cort notes:

• Jen found her way to health via a cytokine panel, a doctor willing to get creative, and a lot of persistence. Cytokine panels can theoretically be ordered by patients. I was having trouble, however, finding one in Quest or Labcorp that was available.

 

[MonkeyMan]

Who was the doctor who prescribed Rinvoq?

 

[MonkeyMan]

I'd like to know the same thing.

I recently self-ordered the at-home "CytoDx Cytokine Analysis" assay from a company called Diagnostic Solutions (https://www.holisticheal.com/cytodx-cdx-test-kit.html). From everything I can tell, the company is legitimate and well-regarded. A mobile nurse came to my home to do the blood-draw. It was easy-peasy, albeit somewhat expensive.

 

[Mary]

I recently self-ordered the at-home "CytoDx Cytokine Analysis" assay from a company called Diagnostic Solutions (https://www.holisticheal.com/cytodx-cdx-test-kit.html). From everything I can tell, the company is legitimate and well-regarded. A mobile nurse came to my home to do the blood-draw. It was easy-peasy, albeit somewhat expensive.

Thanks so much @MonkeyMan !! This appears to measure 16 cytokines -- from what I can tell, 18 cytokines were tested for Jen X, but this seems very close --

Tagging @junkcrap50 , @Cort , FYI

A few years ago I had to get blood drawn for an at-home lab kit. I went to a local hospital and a technician drew blood in their lab department, and Medicare paid for the draw (though not the test, as I recall). But of course one has to be able to get to a facility for a blood draw to do this. I don't know if Quest or Labcorp would do the blood draw and charge Medicare but worth looking into -

 

[MonkeyMan]

Thanks so much @MonkeyMan !!

My pleasure, @Mary! For what it's worth, I got the results back three or four weeks later. Exceedingly high levels of GM-CSF, IFN-gamma, IL-2, IL-6, IL-15, IL-18, and IL-5. The other cytokines were within normal range. This was fairly consistent with what two previous cytokine panels I had, 20 years ago, had shown.

 

[junkcrap50]

From my experience it seems like cytokine panels can't really be compared between different labs. I don't know how much that is true, but labs always say "Well our cytokine panel is much more accurate/precise/sensitive." Also test results from different labs never seem to match up well. Normal cytokines from one test, but them abnormal cytokines on another. So yeah, a cytokine panel can be done from quest, labcor, or other direct mail in labs and they all "do" the same cytokines but I can never be sure of their results. It might not matter if you're hospitalized and have sepsis where cytokines are sky high, but for CFS patients, where everything is marginal / equivocal, it's hard to trust some results.

At least in Jen's case, her cytokine panel matched with her symptoms, indicated treatment, treatment worked at lowering those specific cytokines. So I'd be interested to see what lab/test she used.

 

[almost]

Exceedingly high levels of GM-CSF, IFN-gamma, IL-2, IL-6, IL-15, IL-18, and IL-5.

What specifically does this tell you? Do you try and lower them? Just curious.

 

[dr. Arf]

for CFS patients, where everything is marginal / equivocal, it's hard to trust some results.

There is an interesting remark from Dr Herbert Renz-Polster in HR comments

Dr Herbert Renz-Polster
Fact is that we know next to nothing about cytokines in ME/CFS. These molecules have short half-lifes and are being produced in response to immune challenges. It is therefore to be expected that their titers may be completely different between, let´s say, clinical baseline and PEM. These fluctuations (which can be enormous) could be one of the reasons why measuring cytokines in ME/CFS patient groups has not yielded any meaningful results.
It is sad to say but it´s true: we still have no systematic longitudinal description of ME/CFS – and this haunts ME/CFS research again and again

This is a very interesting remark - and a big problem with a lot of ME CFS research: not measuring at baseline vs during PEM crash.

So just checked AI - FWIW - and half-life is really short:
“Many cytokines have a short half-life, typically ranging from minutes to a few hours.”

Heightened cytokine levels during PEM seems very plausible, just going off my ‘gut feeling’.
During a PEM crash, I literally feel a lot of inflammation (e.g. joints, brain, gut, muscles, etc) and pain.
And it might also be (partially) the reason of the flu-ish type symptoms ??

Exceedingly high levels of GM-CSF, IFN-gamma, IL-2, IL-6, IL-15, IL-18, and IL-5

So I’ve had consistently HIGH values for IL8 and MCP1 by RedLabs via KDM
And on also, but not consistently HIGH IL1, IL6, IL10 mRNA

FWIW

 

[Sushi]

Heightened cytokine levels during PEM seems very plausible, just going off my ‘gut feeling’.
During a PEM crash, I literally feel a lot of inflammation (e.g. joints, brain, gut, muscles, etc) and pain.
And it might also be (partially) the reason of the flu-ish type symptoms ??

I am really glad that these two articles are bringing this discussion to the fore. Though it seems that getting cytokine testing done at the optimal times would be very difficult outside of a hospital-type setting, we can each observe our symptom variations between a day when we are sailing along at baseline and at our optimal level of functioning and a day when we are having severe PEM. Recently I realized that what I had thought were chronic gut problems actually only occur during PEM. I knew that they cycled but I hadn't put it together as a specific PEM symptom. When we read about the effects of high cytokines it is not much of a leap to tie them to PEM.

 

[MonkeyMan]

What specifically does this tell you? Do you try and lower them? Just curious.

I haven't yet tried anything outside of OTC supplements like curcumin, thyme, and black seed oil. I've found these help a little, but nothing more.

 

[Treeman]

When we read about the effects of high cytokines it is not much of a leap to tie them to PEM.

On my search into inflammation, I found the following saying, inflammation hits a high 1-3 days. I thought it sounded very similar to PEM. here

The wound healing process is usually characterized as four sequential but overlapping phases: haemostasis (0–several hours after injury), inflammation (1–3 days),

 

[SleepingGirl]

I wonder how hard it would be to get a doctor to prescribe this. I'm still learning a lot about cytokine's and MCA, a lot of it describes my issues to a T. I actually had seen a disease specialist last year for a chronic fever that I have everyday and still continue to have, wonder if I'd seem crazy if I brought this theory to him since he seemed stumped on my fever.

I'll have to see about getting a cytokine panel done somehow.

 

[MonkeyMan]

On my search into inflammation, I found the following saying, inflammation hits a high 1-3 days. I thought it sounded very similar to PEM. here

The wound healing process is usually characterized as four sequential but overlapping phases: haemostasis (0–several hours after injury), inflammation (1–3 days),

I think you've made a very important observation, as it suggests that PEM, at least in some patients, may be due to cytokine over-production.