1. < Neuropathy
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Anti-mag neuropathy

Posted by fsr @fsr, Mar 24 12:16am

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.
Fsr

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Will in AZ | @allessio77 | 1 day ago

Yes, I'm at the Mayo Clinic in PHX. Hematologist and Neurologist. My only WM symptom is the PN. The diagnosis was based on a Bone Marrow Biopsy and Blood tests.

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Profile picture for positivehealth
positivehealth | @positivehealth | 14 hours ago
In reply to @marcwall "@pkeelan56 Are you saying that Mayo said that Rituxan is the only treatment for anti-MAG neuropathy?..." + (show)
Profile picture for marcwall @marcwall

@pkeelan56 Are you saying that Mayo said that Rituxan is the only treatment for anti-MAG neuropathy? That would shock me. Checkout: Brukinsa (newest BTK Inhibitor). You can Google the results... but I think Brukinsa is effective (eliminating IgM impact on myelin-nerve lining) in 71.4% of cases with the effects evident in an average of 4.6 months. Brukinsa has far fewer (common) side effects than Rituxam but Rituxam is probably used in more virulent (higher IgM) cases than Brukinsa.

My Anti-MAG antibodies (AMA) test was positive (reading "1531") and one-month after starting my Brukinsa, my AMA reading was <900 (normal range 0-999). Having said that, my neuropathy pain (24/7 foot numbness) was a bit worse. Apparently, that is to be expected as the drug attacks the nerve lining IgM clonal cells. When the die, the dead cells have to be removed and filtered through the kidneys and that takes time. I'm waiting patiently for the 4-5 month positive outcome.

Jump to this post

@marcwall
Were you ever treated with Rituximab?
Is Brukinsa infusion or a daily medication?

Wishing you the best for your new treatment.
Thank you

REPLY
1 reply
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positivehealth | @positivehealth | 14 hours ago
In reply to @judyweller3 "Have had neuropathy for two years with balance problems and fatigue. Recently diagnosed with Waldenstron macro...." + (show)
Profile picture for judyweller3 @judyweller3

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.

Jump to this post

@judyweller3

Hello
What is the name of the chemo drug?
Thank you

REPLY
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marcwall | @marcwall | 11 hours ago
In reply to @positivehealth "@marcwall Were you ever treated with Rituximab? Is Brukinsa infusion or a daily medication? Wishing you..." + (show)
Profile picture for positivehealth @positivehealth

@marcwall
Were you ever treated with Rituximab?
Is Brukinsa infusion or a daily medication?

Wishing you the best for your new treatment.
Thank you

Jump to this post

@positivehealth ... I have not been treated for Rituximab and frankly don't want to be at this stage of my WM (started at IgM 2622, Neuropathy w/ AMA 1531). Brukinsa (Zanubrutinib) is a relatively newer (second generation) "targeted (chemo) drug" for WM. Imbruvica (Ibrutinib) was first generation, but it attacked other enzymes as well causing more side effects. BTK Inhibitors specifically bind with the BTK enzyme and therefore "inhibits" it. This attacks the IgM (cancerous) clonal B-cells, which are attacking the myelin-nerve sheathing in my feet (PN). Brukinsa is expected to cause fewer side effects.

Brukinsa is a 160mg pill (capsule) taken orally "twice" per day. It is highly regulated (strong) so it is not distributed through standard pharmacies. I mentioned earlier that it is 71.4% effective in treating peripheral neuropathy. After one month on Brukinsa my IgM dropped from 2454 to 2167 and my AMA (Anti-MAG) dropped from 1531 to normal (<900).

REPLY
Profile picture for pkeelan56
pkeelan56 | @pkeelan56 | 6 hours ago
In reply to @marcwall "@pkeelan56 Are you saying that Mayo said that Rituxan is the only treatment for anti-MAG neuropathy?..." + (show)
Profile picture for marcwall @marcwall

@pkeelan56 Are you saying that Mayo said that Rituxan is the only treatment for anti-MAG neuropathy? That would shock me. Checkout: Brukinsa (newest BTK Inhibitor). You can Google the results... but I think Brukinsa is effective (eliminating IgM impact on myelin-nerve lining) in 71.4% of cases with the effects evident in an average of 4.6 months. Brukinsa has far fewer (common) side effects than Rituxam but Rituxam is probably used in more virulent (higher IgM) cases than Brukinsa.

My Anti-MAG antibodies (AMA) test was positive (reading "1531") and one-month after starting my Brukinsa, my AMA reading was <900 (normal range 0-999). Having said that, my neuropathy pain (24/7 foot numbness) was a bit worse. Apparently, that is to be expected as the drug attacks the nerve lining IgM clonal cells. When the die, the dead cells have to be removed and filtered through the kidneys and that takes time. I'm waiting patiently for the 4-5 month positive outcome.

Jump to this post

@marcwall I haven’t taken any treatment for it except for exercise, which helps mine. I really want to stay away from Rituxan. I don’t want to end up with some opportunistic infection or get the low percentage but yet deadly PML. As a retired pathologist, I’ve diagnosed PML a number of times and the outcome can be devastating. I may consider a BKT inhibitor in the future. We’ll see. But until then, it’s daily exercise and weight training.

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