Feedback: n=10
1. ++ (moderate-severe - effect 30% after 15 months - stopped)
2. -/+ (moderate/severe - 5% - stopped after 3 months due to side effects)
3. -/+ (mild - 5% - stopped after 3 months due to infection)
4. + (mild - 25-30% - then plateau reached - stopped)
5. -/+ (mild-moderate effect 20-30% over 7 months - Stopped - too expensive, relapse?)
6. + (moderate - 20-25% - 1.5 years - Difficulty quitting / withdrawal causes relapse)
7. -/+ (10% - stopped due to side effects (intestines)
8. -/+ (moderate 25% +/- 1 year (- 100 mg p/d), more energy, cognitive + gut better - but LC setback)
9. ++ (severe - 25-50% - 'my daughter improved on Filgotinib, it saved her life' - Euthanasia was cancelled)
10. - (LongCovid - no success - Short course of treatment, just a few weeks)
Together with another patient, I took this survey and added all the anecdotes we could find online
(if possible asking for additional information thru DM, etc)
Survey of n= 35 Self-reported anecdotes ME (incl LC with PEM) patients of All different JAK-inhibitors
49% had significant improvement (= more than 10%)
20% did not benefit at all *
*Inclusion criteria:
- PEM one of the core symptoms
- 2nd hand anecdotes w/out dosing info + duration info excluded
- Trials < 1 month - with nó improvement - excluded (too short treatment duration)
Remarks:
A) Relative high amount patients with
autoimmune comorbidities - they have easier access to JAK-inhibitors
- so improvements in fatigue can have confounders
B) Not aware of any self-reported permanent worsening ME symptoms after trial
C) Some patients did
STOP JAK-inh despite improvement because of
side effects or adverse event
E.g. liver issues, elevated creatinine, gut inflammation, low tolerance medicine in general, infection, Low white blood cells, etc
- Filgotinib might have least side effects (?)
D) Most patients took
for
> 4 months
- Part of patients stopped
protocol because of
financial reason (no prescription, no insurance coverage)
E) Some of the anecdotes & results were reported / confirmed by an ME-specialist
Disclaimers :
1) results might be too ‘optimistic’ - because of:
- positive bias - easier to find self-reporting positive anecdotes (?)
- negative experiences less likely to respond (?)
- Inclusion Mild ME + short duration LC might skew results
2) ‘Low-quality’ survey : meaning n=35 data collected online (when possible with direct contact for details)
3) JAK-inhibitors are strong immune suppressors/modulators with side effects - should be monitored with blood panels from Lab, etc. - under surveillance of a doctor
