I had Rituxan and I feel amazing
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- 33 years
- Published
- Mar 2015
Summary
Ill 33 years with feeding-tube dependence, orthostatic blood pressure of 58/42, bedbound autonomic dysfunction and photophobia, she received 4 weekly Rituximab infusions (375mg/m2) with methotrexate and steroid premedication at Stanford, finishing mid-March 2015. She rapidly felt "way stronger" with clearer thinking, and by 7 months was no longer bedridden, cooking, walking, shopping and hiking, with brain fog, autonomic function and neuropathy "dramatically" better and medications cut in half, though she could not be sure how much was Rituximab versus the steroids. The gains faded around 6-7 months: by December 2015 joint pain, headaches and fatigue had returned "HORRID," requiring two maintenance infusion rounds instead of the one planned ("I am bummed this doesn't last longer"). Her comorbid discoid lupus and EDS did not improve.
What they credit
Credits Biologics & antibodies, Other prescription drugs, Corticosteroid pulses, Rituximab.
Symptoms mentioned
Symptoms: Brain fog, Headaches & migraine, Light & noise sensitivity, Neuropathy & tingling, POTS & dysautonomia, Pain & fibromyalgia.
Similar stories
-
Martin's Paradoxical Temporary ME/CFS Remission Story
Martin became ill after EBV reactivation, Lyme disease and food poisoning, and was bedbound for the last three of his ten years of illness with severe post-exertional malaise. Lyrica, benzodiazepines, tianeptine, quetiapine, rapamycin and methylprednisolone…
-
Michelle
Michelle saw more than ten specialists and tried extensive medical treatment: beta blockers, the migraine drug Ubrelvy, meclizine for dizziness, two rounds of prednisone, B12 shots for neuropathy, and Paxlovid taken months after her initial infection, plus…
-
From a nursing patient to a mountain climber: For four years I lay completely helpless and motionless in bed
Jan Even Raastad credits a Lightning Process course run in his home in late 2010 by Live Landmark and a medical student, after years of prednisone, Imurel, Remicade, Nexavir, antibiotics, antivirals, antifungals, growth hormones and countless supplements had…
-
Pulsed high dose methylprednisolone + inosine + inositol = cured?
Replying in the same thread, Martin reports moving from "very severe to severe" on a corticosteroid infusion but says the inflammation is "not very easy to keep in check afterwards," requiring ongoing herbal management - an explicitly partial and fading…