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Anti-mag neuropathy
Long standing mild sensory idiopathic peripheral neuropathy. Things changed rather quickly. In retrospect maybe not so quick. In any event, now anti-mag neuropathy. I know it’s kinda rare and just interested in knowing if others are out there.
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Was diagnosed at Mayo’s. The only treatment for it is Rituxan, however this drug can come with serious side effects and it only improves the symptoms in 30-50% of cases. Not good enough percentage for me (at least for now) to end up with possible serious infections. Rituxan is an immune therapy that kills B-cells. We need these cells in our body to produce antibodies to fight infections. While it’s killing off the clonal bad B cells, it’s also taking the good B cells with it. In a very low percentage of cases, in can be associated with a brain infection called PML. No cure for this besides supportive therapy. I don’t need this. There are other drugs being tried like the BKT inhibitors but I’m not sure how widely they’re being used. Johns Hopkins has a trial using Rituxan with some other immunotherapy drug. I think it’s called the IMAGine trial. I have found that exercise helps with my symptoms.
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1 ReactionI was diagnosed with anti-mag neuropathy almost 2 years ago. Symptoms progressing slowly, Still confined to toes and I can still walk & function as usual tho I am more careful. I see neurologists at U of Michigan annually.
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1 ReactionAlso have antiMAG neuropathy associated with Walderstrom's. Have had PN for over 20 years. Still walk ok, but recently (last 2 years), my balance has been affected. I very rarely actually fall, but it is an effort to keep balance. Using a lot of doorways and countertops for stability! I'm told that treatment for the WM will most likely stabilize the PN, but I should not expect much improvement due to how long I have experienced the PN. Right now, the treatment stills seems worse than the disease, so I am in active surveillance.
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1 Reaction@rozjaf I think there is an older woman neurologist there who uses Rituxan for anti-mag, am I correct is saying this?
Have had neuropathy for two years with balance problems and fatigue. Recently diagnosed with Waldenstron macro. Currently undergoing 2nd round of treatments of rituxin with chemo added this time. No improvement in blood count yet, but am optimistic chemo will help.