Good morning, Bob. The neurologist at OSHU (cutting edge teaching hosp. on west coast) prescribed Rituximab for my condition but i am having the devil of a time getting it! Turns out medicare won't cover the expense (something over $50,000) for this application. Am now jumping through hoops to see if OSHU will assist with expense. I further understand that the mfg. of rituximab will assist -- but after the fact. I.e., patient fronts the expense and presents denial from insurance company and then they will pickup (some part of) expense. But you don't get any of this in writing. So -- If you can get it, i WOULD SURE GO FOR IT. Doc's second choice is medicine called Cellcept- not as strong, takes at least 3 months to see improvement, i believe it is taken orally. I am holding off on this for the moment, hoping to get the rituximab somehow. Will be very interested to hear further from you re your decision and its effect. Regards, Nancy
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Originally Posted by Connan
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
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