Very frail with ME/CFS, now somewhat better after stopping baricitinib
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- Not stated
- Last post
- Jul 2026
In their words
- Now: Somewhat better
I returned to baseline after I stopped but it was a much better baseline
In context ↗
Summary
A Reddit user with ME/CFS described themselves as very frail and prone to side effects. Valacyclovir with celecoxib helped a lot for two months but the benefit stopped when they stopped, and it made their meninges hot, so they quit. Baricitinib made them feel cured for a few days and cleared neck knots, but it wrecked their gut, and after stopping they were at a better baseline than before.
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What they tried
What they credit
Also tried
Their words about each treatment
- Vicks First Defense · Helped
What has helped me is Vicks First Defense.
In context ↗ - Valacyclovir · Helped
it helped a lot whilst I was taking it
In context ↗ - Celecoxib · Helped
I have been on Valacyclovir + Celecoxib for about two months.
In context ↗ - Baricitinib · Helped a lot
Baricitinib on the other hand made me felt cured for a few days.
In context ↗
Approaches: JAK inhibitors
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| 2022-11-19 | already ill in an ME/CFS forum; used Vicks First Defense nose spray to avoid catching coldsbeing sick (cold/flu) is almost non-existent for me nowIn context ↗ | |
| 2026-07-26 | valacyclovir plus celecoxib helped a lot while taking itI felt that whilst it helped a lot whilst I was taking itIn context ↗ | Valtrex / valacyclovir |
| 2026-07-26 | stopped valacyclovir/celecoxib; benefit lost, hot meninges and personality change for a weekI basically stopped working as soon as I stoppedIn context ↗ | |
| 2026-07-26 | baricitinib made them feel cured for a few days and cleared neck knotsBaricitinib on the other hand made me felt cured for a few daysIn context ↗ | Baricitinib (Olumiant) |
| 2026-07-26 | stopped baricitinib after severe gut problems and hitting a ceilingI had to stop after it absolutely obliterated my gutIn context ↗ | |
| 2026-07-26 | back to baseline after stopping baricitinib, but a better baseline than beforeI returned to baseline after I stopped but it was a much better baselineIn context ↗ |
Adverse events
- Valtrex / valacyclovir“It made my meninges feel hot which only subsided a week after stopping my dosage.” In context ↗ Side effects
- Valtrex / valacyclovir“My hot head also changed my personality in ways I really disliked so I stopped.” In context ↗ Mood or psychiatric effects
- Baricitinib (Olumiant)“I had to stop after it absolutely obliterated my gut” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
I used to have really bad knots in my neck and it completely got rid of them
In context ↗
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