Hey Steve - how and when were you diagnosed with anti-MAG?

NancyKay

I'm a 75 year old male and have had Anti-MAG demyelinating polyneuropathy for probably eight or nine years. It began with a numbness in my feet. I became aware of it trying to walk on beaches while hunting. My balance was poor. I began losing weight, mainly muscle. It was at this point that I was diagnosed with neuropathy. My neurologist put me on Cytoxin, which seemed to arrest it for awhile. Lately my balance problem returned with a vengeance.
I just returned from a visit to a neurologist at Virginia Mason, who told me after some tests that my neuropathy is quite bad. I walk now with the aid of a cane. He told me of a controlled study for Rituximab that concluded it is an effective treatment in patients with A-MAG-DP and suggested I consider it. Any benefits only last a year and, as one posting mentioned, it is so expensive I'm not sure my insurance will go for it. I'm trying to make up my mind whether to give it a try. Sometimes I have pain but for the most part the neuropathy's effect has been on strength and mobility.

Good morning. Seems like we have similar age (I'm 70) and experience with antimag neuropathy. I began to get symptoms of deadness in toes about 12 years ago, was diagnosed with perf. neuropathy and I wasn't offered any help or add'l info until early 2009. Over that time span my feet got pretty numb, and muscle problems began in ankles and legs (bad balance, hard to keep up with group on walks, etc.). In early 2009 I was diagnosed with the antimag thing at OSHU. They started me on a regimen of plasma Pheresis (removing all plasma from bloodstream and the antimag proteins with it) which I continued for 4 months.
It helped moderately with numbness in feet and weakness in legs. OSHU is now recommending treatment with Rituxamab -- I see the doctor today to find out about these treatments. I am wondering if medicare took care of payments for your rituximab treatments?? Or did you go ahead with it? I'll be happy to share my info/experience with this treatment and my condition with you and others.

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

Hi Connan, I know nothing about this drug, but here's a few things "the Google" found out about it:

http://clinicaltrials.gov/ct2/show/NCT00588822

http://www.ncbi.nlm.nih.gov/pubmed/16819424

I'd like to know more, too! 50% ain't bad odds!

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

Thanks for the info Nancy.... I intend to investigate further and see how I can get this covered by some sort of insurance. Will keep you all posted.

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.

Nancy... I have been on a quest to get Rituximub since I was on here last. No luck so far. I am still trying. I have been approved to get IVIG infusions, but I am not sure of the benefit of Gama Globulin. I am very interested in how the Rituximub treatements are working for you as well as the treatment protocal and the cost of the treatments. Thanks

Bob

If anyone knows how to contact Nancy please let her know I am trying to find out how her Rituximab treatments are working out. I will be checking the posts weekly

Thanks

Bob