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Old 09-17-2010, 08:23 PM #11
NANCY W. NANCY W. is offline
Junior Member
 
Join Date: Sep 2009
Posts: 20
15 yr Member
NANCY W. NANCY W. is offline
Junior Member
 
Join Date: Sep 2009
Posts: 20
15 yr Member
Default Taking Rituximab for PN/antimag/monoclonoal gammopathy

Quote:
Originally Posted by Connan View Post
Hi Nancy (and others in this group, I have read all your posts)

Like others here I was diagnosed with Anti-Mag peripheral neuropathy with IgM Kappa monoclonel Gammopathy. This diagnosis happen in 1998. I took IVIG therapy for 2 years but had some really bad reactions. The suggestion from the docs was to go on Cytoxin. At that point I decided the cure may be worse than the disease and just ignored the problems for 10 years. I am now age 72 and have been having balance problems, leg weakness, leg stiffness, and gait problems when I first get up or after I fall asleep in the recliner. the "boot" feeling is now to above my knees. I could rip off a toenail without any pain but if I step on a pebble, the pain is intense.

I decided to go to the Mayo Clinic in Jaxsonville, Fl to see if there was any new treatments that would not kill me. Both the neurology and hematology/oncology docs at Mayo suggest I go on Rituximab which they say is about 50 percent effective in controlling and reversing the neuropathy with little side effects. While it sounds encouraging, I don't see many posts where others have actually taken this therapy with good results.

I have some questions that hopefully there are some of you who could provide some information. It would be appreciated.

Is Rituximab working for you?
What are the treatments and how often are they repeated?
How much are the treatments and does Medicare pay for them?

Any info or responses would be greatly appreciated? I will certainly give feedback to this group if I decide to go forward with the treatments.

Thanks for listening.

Bob
Hello, Bob. It has taken months to get authorized, but I have now had the first 3 (of 4) infusions of Rituximab. I had a reaction like hives during the first infusion, but no further reactions on 2nd and 3rd. My 4th and last will be this coming Thursday. I will be glad to share my progress (hopefully) in the next few months. Fingers crossed.

I hope you are still online here and can let me know if you decided to take the Rituximab and if so, how its going for you. You and I are about the same age and seem to have traveled the same symptom and debilitation path.

Regards, Nancy W.

Hope to hear from you.
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