Long COVID
Severe → no benefit
95% bedbound with long COVID, no improvement after INUSpheresis
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Mar 2025
In their words
- Condition: Long COVID
https://www.reddit.com/r/covidlonghaulers/comments/1iyna4j/inuspheresis/
In context ↗ - At worst: Severe
I was bell 20 before the INUSpheresis.
In context ↗ - Now: No benefit
I’m at my baseline again. So I feel exactly the same as I did before the INUSpheresis.
In context ↗
Read from 7 of their posts and comments; links to the 5 this page draws on
Summary
The person had been 95% bedbound with a Bell score of 10–20 before two rounds of INUSpheresis in early 2025. The procedure left them much worse for about a week, barely able to reach the bathroom, dizzy on standing and short of breath, though sleep improved. They then felt a little better but only returned to their pre-treatment baseline by mid-March, with orthostatic intolerance still worse; they were later found to have an aggressive form of MCTD.
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What they tried
Their words about each treatment
- INUSpheresis · Much worse
I’m at my baseline again ... it made me so much worse
In context ↗ - NaCl infusions · Not said
I had 5 NaCl infusions during the INUSpheresis.
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| before February 2025 | Pre-treatment baseline: 95% bedbound, Bell 20I was bell 20 before the INUSpheresis.In context ↗ | Severe |
| 2025-02-26 | Much worse after two INUSpheresis rounds; barely able to reach the bathroom, dizzy standing more than 2 minutesI’m definitely worse. Fatigue is the worst it’s ever been. I can barely go to the bathroom.In context ↗ | Very severe |
| 2025-03-07 | A little better than a week ago, but not better than pre-treatment baselineI actually feel a little better now. Not better than I did before the treatment, but I’m not as exhausted and tired anymore.In context ↗ | Severe |
| 2025-03-17 | Back to pre-treatment baseline; orthostatic intolerance still worseI’m at my baseline again. So I feel exactly the same as I did before the INUSpheresis.In context ↗ | Severe |
Adverse events
- HELP apheresis / plasmapheresis“I feel worse than I did before. ... I couldn’t shower for a week after the INUSpheresis” In context ↗ Made symptoms worse
- HELP apheresis / plasmapheresis“Fatigue is the worst it’s ever been. I can barely go to the bathroom. I’m so dizzy that I can’t stand for more than 2 minutes ... I also have shortness of breath now.” In context ↗ Made symptoms worse
- HELP apheresis / plasmapheresis“There were also some complications during the INUSpheresis in my case” In context ↗ Other
- HELP apheresis / plasmapheresis“I had complications during the INUSpheresis and it made me so much worse. There are some things that are still worse than before. For example my orthostatic intolerance” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
There are some things that are still worse than before. For example my orthostatic intolerance…
In context ↗ - Muscle weakness
I’m just so exhausted and weak
In context ↗ - Sleep problems
The only positive change I’ve experienced is being able to sleep better at night.
In context ↗ - Breathlessness
I also have shortness of breath now.
In context ↗