List of ME/CFS Recovery and Improvement Stories (page 13 discussion)
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving
- 4 years
- Published
- 2024
In their words
- Condition: ME/CFS
She is 36 and has had ME caused by covid since early in the pandemic.
In context ↗ - At worst: Moderate
She was of moderate severity with typically 5000 steps per day.
In context ↗ - Now: Much better
Five months after her first dose she has improved from moderate to mild severity.
In context ↗ - Began after: COVID
She is 36 and has had ME caused by covid since early in the pandemic.
In context ↗
Summary
Her ME followed covid early in the pandemic and was of moderate severity, with part-time remote work done with difficulty. After daratumumab and bortezomib gave no symptom improvement, five IV cyclophosphamide doses from March 2024 were followed by improvement from moderate to mild five months after the first dose. She still has POTS symptoms and foot pain, and each dose left her very ill for several days.
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What they tried
What they credit
Also tried
Their words about each treatment
- steroids · Helped
Before cyclophosphamide the drugs she best responded to were steroids and rapamycin in particular
In context ↗ - daratumumab · No change
In December 2023 she did two doses of daratumumab. It gave her the expected side effects, but failed to reduce her Igg.
In context ↗ - bortezomib · Worse
Bortezomib caused serious constipation and grade two neuropathy.
In context ↗ - cyclophosphamide · Helped a lot
She did five doses of IV cyclophosphamide dosed at 800mg/m2 spaced three weeks apart.
In context ↗ - rituximab · Not said
She introduced rituximab after the third dose
In context ↗
Approaches: Other drugs and medicines
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. The chart starts 3.9 years after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| early in the pandemic | ME began after covid infectionhas had ME caused by covid since early in the pandemicIn context ↗ | Not stated |
| before March 2024 (before cyclophosphamide) | moderate baseline, about 5000 steps a day, part-time remote work with difficultyShe was of moderate severity with typically 5000 steps per day.In context ↗ | Moderate |
| April 2024 (after second dose) | definite symptom improvement after second IV cyclophosphamide doseShe noticed a definite improvement in her symptoms after the second doseIn context ↗ | Moderate |
| August 2024 (five months after first dose) | improved from moderate to mild; still has POTS symptoms and foot painFive months after her first dose she has improved from moderate to mild severity.In context ↗ | Mild |
Adverse events
- Daratumumab (Darzalex)“It gave her the expected side effects” In context ↗ Side effects
- “Bortezomib caused serious constipation and grade two neuropathy.” In context ↗ Gut side effects
- “Bortezomib caused serious constipation and grade two neuropathy.” In context ↗ Side effects
- “She felt VERY ill for several days after each dose” In context ↗ Side effects
- “found the whole treatment period emotionally very difficult” In context ↗ Mood or psychiatric effects
- “She experienced hair thinning and mild bladder irritation.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Brainfog and PEM were the symptoms that caused her the most frustration.
In context ↗ - Brain fog
She no longer takes rapamycin for brainfog as she says that is now 90% better
In context ↗ - POTS & dysautonomia
POTs is the symptom that is responding the least.
In context ↗ - Neuropathy & tingling
She is still experiencing neurological foot pain
In context ↗