Reply To: my rituxin experience
Although Lori “wrapped up” this post in late Dec (and I have followed her posts elsewhere since then) this seems the right place to update my own Rituxan experience. My neurologist is very open-minded, and he arranged for a “second opinion” consult with a specialist at University Hospital in Denver ( 5 months after my series of four Rituxan infusions ended). Here’s my summary of the result:
Not the best of news, but could be worse; it made sense to us:
Diagnosis, status: “Anti-MAG” diagnosis looks correct; nerve deterioration slowed following the infusions last summer; some active motor nerve inflammation was present in September, per EMG test – but clinical exam (“sharp”, “cool”, “vibration” tests) shows sensory nerves condition better than in June and still about stable.
Prognosis, further treatment: aggressive treatment might be appropriate for a younger patient; but side-effects of available therapies often mean a net negative for the elderly; therefore recommended waiting till Spring, then rerun tests; recovery is not guaranteed and would be very slow….may have to live with present condition indefinitely.
Lifestyle, precautions: keep up physical therapy, re-start water aerobics; use walker, rather than cane, when unaccompanied to guard against falls; moderate alcohol is OK – he suspects that nerve damage in drinkers may result more from poor nutrition than from alcohol itself.
So we are “staying the course”, putting up grab-bars around the house and an extra rail down the stairs. Hoping for a slow improvement, but no signs of that yet. Remember, this is a fairly clear anti-MAG diagnosis, rather than “CIDP”.
I have posted previously as “Ann80” but someone else’s name got substituted so I’m back to “Ann79” – lying about my age!