Reply To: my rituxin experience
Hello Lori: I have waited to contribute my own Rituxan experience until I had something clear to say; now may be the time, albeit with mixed news. I had some neuropathy (lack of sensation, no real pain) in one foot back in 2011. A few weeks after hip replacement in March 2012, the loss of sensation spread to both feet, than upward to the calves, also finger-tips. I first assumed this was due to inactivity after surgery but in mid-June I went to a neurologist who did three types of tests to quantify the nerve damage: clinical, by “sharp”, “cool” and “vibration” skin application; external electrodes to measure strength/clarity/speed of a transmitted pulse; and internal needle electrodes to observe active inflammatory irritation. He had me in hospital 2 days later for four days of gamma globulin IVIG for “an auto-immune disease, to be identified by blood and spinal fluid tests”. Those tests strongly indicated anti-MAG (titre 40,000); not CIDP, as total protein was not elevated. So IVIG, while it may have helped delay the deterioration, was judged not the best treatment.
3 options suggested to treat anti-MAG were apheresis, steroids or Rituxan. Stem cell not mentioned, maybe because I am elderly. I chose Rituxan as being the only option that might stop the disease in one treatment, and we could fund it from our nest-egg (Medicare would fund for RA but not for anti-MAG). In July/August I had 4 weekly infusions of 700ml each and then we waited. In September, I had the clinical exam repeated, not the electrical tests, and appeared roughly stable compared with June.
This week, I had repeats of all the tests done in June. Clinical tests showed the sensory nerves “about the same” but both types of electrical tests on the motor nerves were disappointing. External probes showed some slowing and loss of signal compared to June; that alone would not be so bad, as I had not started Rituxan in June. But the needle probes clearly showed ongoing inflammation attack on the motor nerves, so the Rituxan has not banished the disease. Based on this experience, I think the needle-electrode test offers the best answer to your question “Am I getting better or not?”. If there are screen “blips” when the muscle is relaxed, then the nerves are still under attack. It is so hard to judge ones own progress – good days, bad days…
My other, and maybe best, advice is that I have found physical therapy of great help in handling the disease effects. My therapist proposed (with support from the neurologist) a course of gait and balance training to improve “proprioception” and after three months my walking and standing ability is much improved. The idea is that the brain can learn to use signals from other nerves in ankle/knee joints that are not so affected by neuropathy and which the brain previously ignored. I wish I could drive again, but I can not feel the pedal pressures. Will consider hand-controls if I do not improve.
My neurologist is arranging a “second opinion” from a local specialist, though he still thinks the diagnosis and treatment plan were correct. I’ll post the outcome of that later. Best wishes – Ann