Anyone with Anti-Mag tried Rituximab treatment

Posted by jeffls @jeffls, May 26, 2023

I was diagnosed with Anti-Mag peripheral neuropathy 3 years ago. So far I have in my feet tingling, pins and neddles on and off, always numbness that goes up to just below my knees. Fingers also have similar issues but less often. Has anyone tried Rituximab and how did it go?

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jeffls | @jeffls | Mar 28 8:15am

In reply to @uklisa17 "My husband has just been diagnosed with the same. Did any treatment help?" + (show)

@uklisa17

jeffls | @jeffls | Mar 28 8:17am

I am on pregabalin 100 mg morning 100 mg evening, not sure if it helps but I continue to take it. As I indicate before I don't think think the retuximab infusions have done anything yet for me but I haven't given up hope for the long term.

uklisa17 | @uklisa17 | Mar 29 11:16am

In reply to @jeffls "I am on pregabalin 100 mg morning 100 mg evening, not sure if it helps but..." + (show)

@jeffls I have my fingers crossed for you.

positivehealth | @positivehealth | Mar 30 7:40am

In reply to @jeffls "I have only been having the infusion for two and half years and no change yet...." + (show)

@jeffls

What are your symptoms and have that gotten worse over the years?
Has your AntiMag levels gone down?
Thank you for sharing?

jeffls | @jeffls | Mar 30 9:27am

Yes my symptoms have got worse over the years.
Symptoms
1)Tingling bottom of feet which I hate the worst but luckily over the years that one has gone away.
2) prickling or pins and needles on the top of my feet another one I don't like and I still get sporadically
3) numbness which now goes from my feet up too close to my knees, It seems to have stopped there. That one doesn't bother me really.
4) cramping started in my toes and then to my feet sometimes the bottom sometimes the top sometimes in front and more recently in my ankles and my calves. Everyday is different and the symptoms even travel around
5) My hands have flight issues with my fingertips being numb sometimes.
6) bottom of my feet can be very tender sometimes.
For me night time is the best and if I get enough sleep they feel good in the morning. Walking seems to sometimes aggravate the symptoms.

As far as my number's going down for anti-mag, I've been doing tests with quest diagnostics which I understand is not the best and they haven't shown any decline but I kept out at the max so they may have to declined and I just don't know it. My John's Hopkins doctor at first was reluctant to let me try rituximab but seems to have changed his mind and now is in total agreement that I can try it if I want. If you're doing research on the internet you should also look at the effect of LLPCs on antimag neuropathy and how that's very hard to get at.
Hope this helps. Let me know if you have any other questions

laporta | @laporta | Mar 31 10:46am

Hello, I have had two rounds of Rituximab so far, one in June of '25, the other in December. I have another session in June of '26. This followed attempts with IVIg and steroids, neither of which helped. I'd say that I am 12-15% better than I was when I started. I'm scheduled to have a follow-up EMG test in May. I think that the reason there is so little information on the subject is that there isn't a lot of money going into research. This is a small club. One of out of 100,000 or about 3,500 people in the U.S.

As others have noted, Rituximab may take a while to have a positive effect. Everyone is different. So, far nothing has gotten worse for me. That's big. Some things have gotten better. Thing is, I'm not just leaning on Rituximab to be the miracle element -- so, it's hard to know to what extent that my improvement is due to the Rituximab infusions. I do targeted p.t. strengthening and balancing exercises, take supplements, do aerobic workouts, use a vibration plate, eat clean, use Tens therapy, use massage, wear awesome shoes, and on and on. More importantly, I never lose sight of the fact that I will overcome this disease. Good luck to all.

jeffls | @jeffls | Mar 31 7:49pm

In reply to @laporta "Hello, I have had two rounds of Rituximab so far, one in June of '25, the..." + (show)

@laporta
Have you had Myelin-Associated Glycoprotein (MAG) Antibody, IgM test theoretically if retuximab is working the titers should be dropping?
Also does insurance cover the retuximab, since this is an off label use I was told it would not.
Glad you're seeing improvements, hope it continues.

laporta | @laporta | Mar 31 8:59pm

In reply to @laporta "Hello, I have had two rounds of Rituximab so far, one in June of '25, the..." + (show)

@laporta Sorry, I should have stated from the beginning that I have Anti-MAG rather than assuming.

laporta | @laporta | Mar 31 9:07pm

In reply to @jeffls "@laporta Have you had Myelin-Associated Glycoprotein (MAG) Antibody, IgM test theoretically if retuximab is working the..." + (show)

@jeffls Thanks. I appreciate the kind thoughts. Yes, I have Anti-MAG. I should have stated that initially rather than assuming. At first, Kaiser thought it was peripheral neuropathy based on the initial symptoms. Then, they thought it was CIPD based on the EMG test response. Then, they did blood tests with a special lab in St. Louis to find out it is Anti-MAG. Yes, my Rituximab is being paid for through Kaiser. I am scheduled to have more tests done in May. I have two great neurologists and a P.T. person at Kaiser.