Long COVID
Outcome unclearNeeds ongoing treatment
Long COVID with major neuropathy and autonomic symptoms, trying IVIG and rapamycin
- Condition
- Long COVID
- At worst
- Not stated
- Ill for
- Not stated
- Last post
- Jun 2026
Summary
A Reddit user reported major neuropathy, autonomic symptoms and temperature dysregulation, with normal fibre density on biopsy. They took rituximab, azathioprine, cyclical famciclovir, IVIG, steroids and rapamycin, and said adding rapamycin was having an effect, with bulging veins responding to IVIG and rapamycin. IVIG gave them no side effects; a TNF-alpha drug worsened them.
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What they tried
Also tried
Their words about each treatment
- rituximab · Helped
partial response to rituximab
In context ↗ - IVIG · Helped
buldging veins which are responding to both, IVig and rapamycin
In context ↗ - azathioprine · No change
rapamycin seems to be hiting a target which azhatioprine isnt
In context ↗ - rapamycin · Helped
added rapamycin which is having an effect
In context ↗ - famciclovir · Not said
Im also taking antivirals in cycles , famciclovir
In context ↗ - steroids · Not said
im also stuck on steroids
In context ↗ - tnf-a drug · Worse
aside worsening from a drug(tnf-a) as expected
In context ↗
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 |
|---|---|---|
| — | long COVID with immune-mediated neuropathy and dysautonomiaMajor neuropathy and autonomic symptoms as vascular and temperature dysregulation.In context ↗ | |
| 2026-06-17 | rapamycin added to immune regimen, having an effectadded rapamycin which is having an effectIn context ↗ | Rapamycin / sirolimus |
| 2026-06-18 | bulging veins responding to IVIG and rapamycini have buldging veins which are responding to both, IVig and rapamycinIn context ↗ | Rapamycin / sirolimus |
Adverse events
- “aside worsening from a drug(tnf-a) as expected” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Neuropathy & tingling
Major neuropathy and autonomic symptoms as vascular and temperature dysregulation.
In context ↗