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!