3-month IVIG experience
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- 4 years
- Published
- Jul 2020
Summary
Did two years of IVIG (July 2016 to July 2018) at 82g per infusion cycle, run at a very slow infusion speed of 40 ("but it was the fastest that I could tolerate"), for autoimmunity, MCAS and dysautonomia that included years of muscle weakness and breathing difficulty. Rituximab was added partway through and continued afterward as twice-yearly maintenance once IVIG was stopped. Had "almost instant improvement" in MCAS/allergic reactions with no further anaphylaxis, and by around May 2018 "was able to breathe normally, walk without wheelchair, and drive my car again" after four years of wheelchair use. As of her last post in this thread in July 2020, the improvement had held under ongoing maintenance Rituximab.
What they credit
Credits IVIG, Alternative therapies, Antihistamines & MCAS, Diet, Biologics & antibodies, IVIG / subcutaneous Ig, Rituximab.
Symptoms mentioned
Symptoms: Breathlessness, Mast cell (MCAS) & allergies, Muscle weakness, POTS & dysautonomia.
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