Upadacitinib (rinvoq)--could it reduce fatigue in ME/CFS?

I've been asked to participate.

I contacted the researchers last December, with the caveat that I was wrapping up a self-directed (under medical supervision) solo trial of the Pridge-Putrino protocol (Celecoxib + Valacyclovir for 120 days with Paxlovid for 15 days after the second week — no benefit).

They just got back to me today to ask if I was still interested. I live a few blocks away from the IRCM and this does appear to be a well-designed trial, so am leaning towards a yes (tired of being a guinea pig as I may be. At least this will provide data, even if only to exclude these JAK inhibitors as viable treatment).
Arfmeister said:
So I hope someday they will Conduct a serious longitudinal study on ME/CFS patients to gather extensive data - before/after Exertion (PEM)
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Funny you should mention it. From their consent form (translated from French using DeepL):
Vital signs: Your heart rate, blood pressure, temperature, respiratory rate, and oxygen saturation (amount of oxygen carried by your blood) will be measured during the screening visit, visit 2, visit 5, and visit 8.

6-minute walk test: You will perform a 6-minute walk test at visits 2, 5, and 8 to assess your exercise tolerance. This test measures the distance you are able to walk in 6 minutes on a flat, hard surface. The goal is to walk as far as possible in 6 minutes. You are allowed to walk at your own pace and rest if necessary. You will be asked questions about your breathing before and immediately after the test.
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That's going to be a problem (which I will raise during my screening interview): I can run for 6 minutes (yes, even now, after 3 years of being utterly sedentary—that's how much of a beast I was in the before times). The problems arise 36-72 hours later. And there is, to my knowledge, no testing planned for the PEM that this walking test would inevitably trigger (if I did, in fact, run).

That issue aside, this would be the first time I have access to any of the less widely available testing... seeing one (or multiple) biomarkers for my current state would be most welcome. Again, from their consent form:

Blood sample for long COVID biomarkers: A sample of your blood will be taken during Visits 1 and 5 to measure COVID-19, including:
  • markers of inflammation
  • markers of disease activity
  • viral persistence.
Blood samples will be taken for mandatory biomarker tests. These tests focus on certain types of immune cells and proteins present in the blood, as well as the expression of certain genes.

Blood samples for safety: Blood samples will be taken to check for the presence of a substance called C-reactive protein, which appears in the blood and can be used to measure the level of inflammation. In addition, we will check liver and kidney function liver and kidney functions, lipid levels, salt and protein balance in the blood, as well as the number of red blood cells, white blood cells, and platelets in the blood.

Blood sample for genetic testing: During the initial visit, a blood sample will be collected to determine how genes influence an individual's response to the study drug (pharmacogenomics).

Pregnancy test [does not apply]

Physical examination: During the initial visit on Day 1, your study doctor will perform a complete physical examination to check your head and neck, eyes, heart and lungs, abdomen, skin, arms, and legs. The physical exam will also include checking your skin for any lesions (a part of the skin that looks abnormal compared to the skin around it). If the results are abnormal, or if you have any abnormal signs or symptoms, you may be referred to a specialist. Your height will be measured during the selection visit, and your weight and body mass index (BMI) will be measured during all visits, as indicated in the event schedule table.

Patient questionnaires (SBQ, PROMIS-29, GAD-7, PHQ-9, FUNCAP27): You will answer questions about your quality of life prior to your initial COVID-19 infection and your current quality of life and symptoms of long COVID. Completing all questionnaires should take a total of approximately 10 minutes.
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Bottom line:

Whereas it'd be nice to be closely followed by a research group that clearly wants to advance our understanding of this tricky plague, and maybe help close in on workable treatments, @Jonathan Edwards was pretty adamant early in this thread (2020-2024) that JAK inhibitors (in this case either upadacitinib or pirfenidone) ain't likely it. So although I too am:

V.R.T. said:
glad this trial is happening.
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I'm selfishly wondering if it's worth it.

I already feel like shit. I've tried triple anticoagulant therapy, stellate ganglion blocks, rapamycin (which is what came closest to helping - though also opened the door to a reinfection) and most recently the supposedly promising IMC-2 (Pridgen-Putrino antivirals), so I'm a little burnt out.

It's six months. It's four blocks away. I might get the placebo. If you were me, would you go for it?
 
“Led by Fraser and his team at Western University in Ontario, Canada, LC-REVITALIZE will recruit 348 participants with Long COVID in six countries: Brazil, Canada, Italy, Uganda, the U.S., and Zambia. The study will begin by simultaneously trialing Rinvoq (at 15 milligrams) and the anti-inflammatory drug pirfenidone (at 267 milligrams) daily for 90 days. Pirfenidone is approved to treat pulmonary fibrosis, a chronic lung disease. “

This one?

Covidivici said:
It's six months. It's four blocks away. I might get the placebo. If you were me, would you go fo
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Yeah—I would do it. It’s a platform trial, which is the best. “In theory new treatments can be added, and ineffective ones removed, without starting a new trial.” See here for example:

 
Covidivici said:
The problems arise 36-72 hours later. And there is, to my knowledge, no testing planned for the PEM that this walking test would inevitably trigger (if I did, in fact, run).
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If I were you I would do it with in your constraints for PEM, so no running. I don’t think they are asking you to go as fast as possible. I would go as far as possible within your known limitations for PEM. Eg. For me I can walk 6 mins on flat but it becomes harder after 4 to 5 mins and I must go regular pace for maybe 2 to 3 mins and q slow for last few mins to avoid PEM and then lay down. I don’t do this often and wouldn’t do it on concurrent days.
 
Covidivici said:
The problems arise 36-72 hours later. And there is, to my knowledge, no testing planned for the PEM that this walking test would inevitably trigger (if I did, in fact, run).
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I don't think a walking test allows running.

If it were me thinking of taking part I would only do so if they were doing serious follow up of symptoms and functional capacity for at least 2 weeks before and after the 6 minute walk test. And preferably giving participants wearable step and heart rate monitors to wear and log data throughout the trial and for at least 6 months after. How else can they assess whether the drug has impacted PEM.
 
Covidivici said:
If you were me, would you go for it?
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I couldn't say. In terms of benefit, I think the evidence for this JAK drug is a small case study (search the drug name on here to find it). I dont know anything about the other drug. These are serious drugs and only you can make the decision to participate. It depends on your personal functioning, risk aversion level and opinion as to the potential risk or benefit of these drugs.

I'm severe and react to a lot of drugs so I'd only do a trial of something I thought had a really good shot of helping.

Edit - just remembered this is rinvoq not abrocitinib - i think it's based on some studies by this group and the immune markers they found in there iirc.
 
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