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

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?

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.

Have anyone had success with treatment??

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?

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

I was recently diagnosed with dads, final confirmation today after more blood work. It’s been 14 months of tests to find a diagnosis. Begin IVIG next week then treatment with Rituximab. Kind of anxious but pray this works at least somewhat. I want my life back. Best of luck to you!

My test result MAG SG PG Ab IgM, EIA
Value >1:1024
Standard Range
< OR = 1:1600
Does this = DADS M? or no? So confused.

Hi, mine started about eight years ago and slowly has been progressing. Got the diagnosis maybe three years ago. Had the Rituximab treatment but it didn’t help me much. I believe it did help with balance for awhile but I decided to not do it again beyond one round. I had it a month before the Covid shut down and entered Covid immune suppressed.

I to have the electrical storm in my legs and arms. When it’s bad and full force I can feel it in my torso as well. I’ve gone plant based for diet, do yoga, use CBD topical as well as ingest when it’s real bad. Try to keep exercising as it does help even though my feet swell and turn red. Ibuprofen helps. Everything helps a little.

My hope is that they’ll figure out a targeted therapy.

I met a drug/therapy rep by chance from Janssen and Janssen that represents CAR-T which works on myeloma and has recently been proven to be applicable sooner. I believe this could help us but they need time to sus it out.

I’m not sure what all those letters represent. My diagnosis was DADS-M, I think I’ve got the Igm too. I believe the M stands for MGUS which is a Monoclonal Gamopathy of Unspecified Significance. DAD-M appears to be the most tenacious of the family.

Blood doctor indicated a 1 in 5 chance of developing into Myeloma in the next 20 years. This disease I’ve come to discover is the precursor to Myeloma but may never get there I hope.

Can we get an update? Is it responding to treatment? Did they use Rituximab? Hope it helps!