Originally Posted by Connan (Post 651624)

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

Originally Posted by Marilyn Henson (Post 490629)

Hello,
I am responding with the hope I may be of some help to your Anti MAG health issue.
I have been under treatment at the University of Washington Hospital for aproximately seven years now with success. I became afflicked with tingeling, pain and numbness in the heals of my feet, weekness in my legs, and extreme tiredness. I spent many a nights with out sleep in the beginning.
I see a specialist at the UW hospital. I am under ongoing treatment with Rituxin IV's every 10 weeks. This has halted and also improved my condition.
My DR. is Micheal Weiss.

Originally Posted by NANCY W. (Post 658209)

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

Originally Posted by Marilyn Henson (Post 490629)

Hello,
I am responding with the hope I may be of some help to your Anti MAG health issue.
I have been under treatment at the University of Washington Hospital for aproximately seven years now with success. I became afflicked with tingeling, pain and numbness in the heals of my feet, weekness in my legs, and extreme tiredness. I spent many a nights with out sleep in the beginning.
I see a specialist at the UW hospital. I am under ongoing treatment with Rituxin IV's every 10 weeks. This has halted and also improved my condition.
My DR. is Micheal Weiss.

Originally Posted by jrip (Post 628525)

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.

Originally Posted by Connan (Post 651624)

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

Originally Posted by Granacki (Post 146815)

So glad to hear some anti-MAG responses out there!

Here's what I know so far about anti-MAG. Glentaj is exactly right. It's an elevated IgM protein in the blood that produces anti-bodies that attack the Myelin sheath. I've been told it is mostly sensory, but can develop into a motor-neuropathy. The doctors don't know why a person's blood all of a sudden starts producing too much IgM, or why everyone with the excess protein doesn't get neuropathy. (Rina-- this is a special blood test not in your usual workup). The same elevated protein is also associated with scary cancers like multiple myeloma (bones) and Waldenstrom's macroglobulinemia (blood cancer) so they do tests for those too. I guess I should consider myself lucky since after months of tests at the University of Chicago all the really hideous things were ruled out and I was left just the way I came in -- with numb, tingling, and burning feet, and no cure or treatment.

For me, it started with numbness on the bottom of my left foot and in my toes, and was exacerbated when I walked a lot. (I like to walk miles along the lakefront). I assumed it was a mechanical issue and I went to orthopedic doctors first, who diagnosed it as metarsalgia (basically inflammation from fallen metarsal arches). I argued with a string of orthotists whose expensive orthotics had no effect. Then, anxious to do something more proactive, I wrongly had surgery for a modified bunionectomy and the insertion of screws in my foot to keep the bones from moving around too much. Of course the incisions killed off even more nerves that never came back. Then I tried a podiatrist who specialized in neuropathy who wanted to do more surgery to release what he said was tarsal tunnel (a nerve compression). All along I kept asking these doctors if I should see a neurologist and they said, no, not necessary. Finally after a chiropractor, acupuncture, and chinese herbs, I found my own neurologist and got my diagnosis. I go back tomorrow for a 6 month visit.

From what I hear from CIDP sufferers, another auto-immune neuropathy, that condition sounds far more debilitating. The only positive about CIDP is that it does seem to respond to some treatments. Steroids have no effect on most anti-MAG, nor do they seem to recommend the IV plasma exchange treatement. The only treatment that shows some benefit is Rituxan but since it's so toxic, they wait until you're in really bad shape before trying it.

What little information I have seen says anti-MAG shows "little progression over long periods." With a heightened awareness of every new twitch and buzz and sting moving slowly up my feet for the past three years, and now above my ankles, I'm trying to grasp what slowly progressive means. I'm also trying to imagine how I can walk if the muscles still work but I can't feel any sensations below my knees. I've always had extremely high energy levels, do lots of different things including run my own business and take care of a family, and am pretty fit and otherwise healthy for being almost 60. This anti-MAG isn't really slowing my hyperactivity down too much but it does make walking uncomfortable. I'm just wondering how much longer do I have before it gets really bad, and how bad will it really get?