DADS-M Neuropathy with Anti-Mag Antibodies...anybody else?

Posted by savomic @savomic, Nov 28, 2022

After 4 years of lower limbs weakness, I was recently diagnosed with Distal Acquired Demyelinating Symmetric with the M protein and tested positive for Anti-Mag Antibodies. Pin and needles in feet and lower limbs, ataxia, weak ankles, and tremor up to my hips. Difficulty walking and balance issues. Originally treated with IVIG with no results. Started Rituximab treatment every 3 months. Anybody else with similar issues?

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Hello @savomic, Welcome to Connect. While we wait wait for others to share their experience, I thought I would share a couple of articles for members not familiar with Distal Acquired Demyelinating Symetric with the M protein (DADS-M).

—– " The pathology of anti-MAG positive DADS, involves deposits of IgM and complement, with splitting of myelin lamellae resulting in demyelination and conduction block. The response to treatment in DADS with paraproteinemia (DADS-M) to the first line agents effective in CIDP is suboptimal (1, 8). Initial reports demonstrated a 30% response rate with minimal subjective improvement in patients with DADS-M while patients with DADS-I or CIDP had nearly 70–95% objective improvement with conventional IMT (6). About 70% of patients with DADS-M in this cohort had anti-MAG antibody positivity, confounding the results as those with anti-MAG antibody do not respond well to first-line CIDP treatments."
— Treatment Approaches for Atypical CIDP:
https://www.frontiersin.org/articles/10.3389/fneur.2021.653734/full
—– "The presence of MAG antibodies is often linked to a rare demyelinating neuropathy with poor treatment response known as distal acquired demyelinating sensory (DADS) neuropathy. In some cases, reaching correct diagnosis through clinical and electrophysiological evaluation alone can be difficult due to overlapping features, or when patient evaluation occurs later in the disease course. Incorporating MAG antibody testing into the diagnostic workup can help identify the correct diagnosis and exclude patients with treatable immune-mediated neuropathies."
— MAG – Insights – Mayo Clinic Laboratories:
https://news.mayocliniclabs.com/neurology/autoimmune-neurology/neuropathy/demyelinating-neuropathies/mag/
How are the Rituximab treatments working so far?

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@johnbishop

Hello @savomic, Welcome to Connect. While we wait wait for others to share their experience, I thought I would share a couple of articles for members not familiar with Distal Acquired Demyelinating Symetric with the M protein (DADS-M).

—– " The pathology of anti-MAG positive DADS, involves deposits of IgM and complement, with splitting of myelin lamellae resulting in demyelination and conduction block. The response to treatment in DADS with paraproteinemia (DADS-M) to the first line agents effective in CIDP is suboptimal (1, 8). Initial reports demonstrated a 30% response rate with minimal subjective improvement in patients with DADS-M while patients with DADS-I or CIDP had nearly 70–95% objective improvement with conventional IMT (6). About 70% of patients with DADS-M in this cohort had anti-MAG antibody positivity, confounding the results as those with anti-MAG antibody do not respond well to first-line CIDP treatments."
— Treatment Approaches for Atypical CIDP:
https://www.frontiersin.org/articles/10.3389/fneur.2021.653734/full
—– "The presence of MAG antibodies is often linked to a rare demyelinating neuropathy with poor treatment response known as distal acquired demyelinating sensory (DADS) neuropathy. In some cases, reaching correct diagnosis through clinical and electrophysiological evaluation alone can be difficult due to overlapping features, or when patient evaluation occurs later in the disease course. Incorporating MAG antibody testing into the diagnostic workup can help identify the correct diagnosis and exclude patients with treatable immune-mediated neuropathies."
— MAG – Insights – Mayo Clinic Laboratories:
https://news.mayocliniclabs.com/neurology/autoimmune-neurology/neuropathy/demyelinating-neuropathies/mag/
How are the Rituximab treatments working so far?

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Hello @johnbishop and thanks for the info. Very hard to find any information on this rare autoimmune disease. About a year ago, I received 4 treatments four weeks in a row and did not see any improvements. In September 2022, they decided to go with a different approach and prescribed it for every 3 months for at least 1 year and then reevaluate my health after 4 treatments. Next treatment the end of December.

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Have anyone had success with treatment??

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@con3

Have anyone had success with treatment??

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Welcome @con3, You will notice that we moved your post into an existing discussion listed below on the same topic started by @savomic who has started Rituximab treatments and may be able to share their experience.
— DADS-M Neuropathy with Anti-Mag Antibodies…anybody else?:
https://connect.mayoclinic.org/discussion/dads-m-neuropathy-with-anti-mag-antibodies-anybody-else/
Has your doctor suggested a treatment?

REPLY
@johnbishop

Welcome @con3, You will notice that we moved your post into an existing discussion listed below on the same topic started by @savomic who has started Rituximab treatments and may be able to share their experience.
— DADS-M Neuropathy with Anti-Mag Antibodies…anybody else?:
https://connect.mayoclinic.org/discussion/dads-m-neuropathy-with-anti-mag-antibodies-anybody-else/
Has your doctor suggested a treatment?

Jump to this post

I have tried 3 different treatments in the last 2 years. I am now doing gazyva, not sure if it is worst or better.

REPLY
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