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

I also struggle with DADS-M. This illness is so difficult because it is so rare. Most of my doctors have never heard of it and don’t have time to research it. I’ve been given IV I G, which did no good. I have had no other treatment. I have severe pain in my spine and take 70 mg of morphine plus cannabis every day and that only controls the pain somewhat. Nice to hear of someone else with this illness as there is no support that I know of. Thanks for your post.

What I have read in the scant research papers on DADS-M is that Myeloma occurs 1 to 2% per year. Therefore it is unlikely that you will develop that although not completely impossible. My doctor also gave me the same numbers. I have had this illness for about 14 years and it has not progressed to myeloma. I hope this makes you feel better.

<p>Has anyone out there with Dads-M had a positive response to Rituximab?</p><p>I have DAD-M. I have had intolerable reactions to all anti-depressants, Lyrica etc. and many other drugs. The only treatment I have not tried is Rituximab. I am very sceptical about this treatment as according to the literature, It has a very poor treatment outcome. Also, it can have terrible side effects. Given the problems I have with most drugs, and unless I can see clear evidence that it will help, I am reluctant to take it. I’ve read that many of you are taking it, but I haven’t heard anybody say they’ve had a good result. If you have DADS-M and have taken Rituximab could you let me know what your outcome is? This isn’t exactly scientific, but no one has posted (that I can see) that it’s actually helped, which does agree with the literature I’ve read. Thanks everyone.</p>

Yes I’d like to know also because I’m contemplating getting it in the future.

@dorilyn and @harley22, I moved your questions about Rituximab to this existing discussion:

- DADS-M Neuropathy with Anti-Mag Antibodies...anybody else? https://connect.mayoclinic.org/discussion/dads-m-neuropathy-with-anti-mag-antibodies-anybody-else/

@savomic who also has DAD-M Neuropathy has been treated with Rituximab and may be able to provide their experience as well as members like @con3 @as143 @robertstri and others.

I have been on IVIG with Privigen for 6 months and have had only 1 RITUXAN infusion so far about 2 months ago. I have no pain with my illness but numbness in both feet and both hands. I have noticed my muscles feel stronger both legs and arms and I am not frail as I was before beginning treatment. As to the numbness, some days are better than others but it is still there. My Privigen is monthly, RITUXAN every 6 months. I don’t recall any side effects from RITUXAN but do suffer headaches with Privigen so we are addressing that with slower infusion rate.

I have had a series 4 infusions of Retuxima in each of 2022 & 2023 (8 total) with some positive outcomes. No further progression at this time and even slight improvement. I was offered treatment at least 10 years ago but sadly I declined. I wish I had had the treatment at that time as I do have to wear a brace on my left foot due to nerve damage. Balance is an issue so have been doing physical therapy as well as working with a personal trainer.

I have been diagnosed with CIDP with DADSS. Tried IVIG but had bad reaction to this. Tried high dose prednisone with no response. Then had 2 rounds of Rituximab with no results. Latest EMG shows progression of disease. Will be starting physical therapy. Has anyone done physical therapy and did it help? Frustrated with progression of disease and uncertain of my future. Probably had the disease for 6years but not diagnosed until 2021…..covid slowed opportunity to get treatment started. I did not have covid.

Welcome @idahoj, I know it has to be frustrating not having a treatment that helps and not knowing what the future holds. While you wait for members that have CIDP and DADS with experience having physical therapy, I found some information that may be helpful.
--- Treatment Approaches for Atypical CIDP: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8005557/.

Did your doctors explain how the physical therapy could help?

I too have been diagnosed with DADS. I have thus far had 7 months of IV Therapy with Privagin and prednisone and 1 RITUXAN treatment about 4 months in to be repeated every 6 months. My original symptom was muscle weakness especially hips, thighs followed by numbness which began in left toes and progressed to both feet and both hands. I did find physical therapy to help a great deal with muscle weakness, gait, and balance issues but you must practice exercises at home to the best of your ability. I have not been to PT now in about 4 months due to a very negative reaction to Duloxetine which took a couple of months to recover from. Important to point out that this was my own personal reaction and I am not discouraging its use as many have benefitted from it, I did not. Have not been back to PT and would benefit from going back I’m sure but feeling too overwhelmed at the moment to resume. However, I have noticed only recently that my muscles feel stronger since the start of IV therapy even without physical therapy. I do use a cane outside of the house and with PT I probably wouldn’t need it or at least be less reliant on it.
I feel that in the beginning had I not started PT when I did I would have been in a wheelchair as my weakness got so bad. Couldn’t climb stairs, my knees constantly gave out and I would fall so definitely try Physical Therapy. I am sorry IV therapy didn’t work for you, or RITUXAN but I wonder if you weren’t on it long enough, it can take a year or more to see any results, and/or if you tried different IV medications as some work better for some people than others. I wish you all the best!