Reply To: my rituxin experience

April 13, 2013 at 2:00 pm

Hi, Lori….I have not found the EMG test too painful or stressful, so maybe that’s how I got the “quiet” response on the recent test when lying down.  The two “noisy” tests in 2012 were done with me sitting on the edge of the bed; maybe some time I’ll get to do the comparison on the same day!

As for Rituximab, both neurologists (the consultant I saw in January, and my primary neurologist whom I saw again this month) agreed as follows:  “More aggressive treatment is not justified for a patient of my age unless significant worsening develops” – so no more infusions, for now.   Given the major immuno-suppression effects of Rituximab, we  felt that was wise advice.  I have decided not to take palliative drugs for the side-symptoms (tingling, fuzzy feeling, etc) unless they get worse.

Medicare would not pay for Rituximab for anti-MAG treatment.  We were fortunate to have savings to cover the almost $20,00 for my four weekly infusions last July.  We’ll get a fraction back from the IRS by itemizing medical expenses for the first time this year.

As I’ve posted before, we have made safety improvements around the house to prevent falls.  I use a cane around the house during the day, plus the grab bars.  I use a four-wheel walker when out in crowds because people don’t always see the cane and make allowances.  I also use the walker to get to the bathroom in the middle of the night.  My balance continues to improve slowly, which I attribute mainly to my weekly physical therapy sessions – as the recent tests showed little if any sign of nerve regeneration yet.

I walk about a mile a day, holding a hand and using my cane.  I use an exercise bike for maybe 20 minutes a day, plus occasional water-aerobics which is great but quite a drive away.  My husband has to drive me, since I can’t feel the pedal pressure or really know which pedal I’m on!  I am dubious about learning on a hand-control car although we have looked into that seriously.

I’ve mixed up some of my earlier information here with some new comments, hoping this may be useful to new readers of the Forum.