From Severe ME/CFS to Healed: Jen's Remarkable Rinvoq ME/CFS Recovery Story
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- 18 years
- Published
- Nov 2024
Summary
Jen, bedbound 90% of the time for 18 years with severe PEM and dysautonomia, took Rinvoq 15mg daily for 2 months until it was stopped due to a dangerously low white-cell count. She initially felt no better, but a few weeks after stopping the drug her debilitating symptoms suddenly lifted; 8 months later she remained in remission, able to hike, travel, cook, garden and socialize, with cytokine levels continuing to normalize.
What they credit
Credits Biologics & antibodies, JAK inhibitors (Rinvoq, baricitinib).
Symptoms mentioned
Symptoms: POTS & dysautonomia, Post-exertional malaise.
Similar stories
-
Monoclonal antibodies article comments (Chris)
Chris is participating in a Vanderbilt clinical trial of baricitinib for long COVID, having started the drug on October 18, 2025. He reported feeling "the best I have since I got Covid," becoming functional though still limited. As of his comment he was…
-
Filgotinib (JAK1 inhibitor) - future of CFS/ME treatment
Took filgotinib 200mg for three days in early 2023, after about three years of suspected ME/CFS that at its worst left him housebound, able to walk ten minutes before needing hours of rest and to sit upright only twenty minutes at a stretch while working…
-
Three clinical trials for Long COVID are testing JAK inhibitors (unnamed)
Credits upadacitinib. An unnamed patient had long COVID and reports a substantial improvement. Other two on the same drug worsened over six weeks.
-
Three clinical trials for Long COVID are testing JAK inhibitors (Jen)
Jen took the JAK inhibitor upadacitinib (Rinvoq) for 66 days starting December 2023 before stopping early due to profound weakness and paralyzing fatigue with no apparent benefit while on the drug. She had suffered from severe myalgic encephalomyelitis for…