Hi Munger

Welcome to NeuroTalk .

Recent evidence suggests that Rituximab is less effective than was initially thought in treatment of anti-MAG neuropathy Placebo-controlled trial of rituximab in IgM anti-myelin–associated glycoprotein neuropathy .

Imbruvica is usually used in treatment of some B cell cancers. Peripheral neuropathy is a known side-effect of this Imbruvica Side Effects in Detail - Drugs.com .

These things might be worth discussing with your haematologist.

Thank you so much, my anti-mag level is 48045. Is that considered high?

Probably what was done was to measure your anti-MAG antibody level using an immunoassay (an ELISA). The results are usually expressed in Buhlmann Titre Units (BTU).

BTU <1000 is negative, BTU between 1000-3000 is low positive and high positive is >70000 BTU. So, your results are in the positive range.

I saw the hematologist oncologist yesterday and have decided to proceed with the Rituxan infusions for four weeks.

I'll let you know how it goes, first one is Jan 5th

Well, my insurance won't pay for Rituxan so I'm waiting to hear about funding through the manuf. they won't pay for Imbruvica either.

I was diagnosed last year with anti-mag and WM. I go to the Mayo Clinic and have had 2 rounds of Rituxin to treat my anti-mag symptoms. In addition to PN, it has caused high blood pressure and digestive problems as a result of mylen degeneration of nerves and muscles to vital organs. Rituxan therapy has been very good at reducing my numbers and symptoms but not long lasting. I am hopeful of some new targeted therapies in the future that will be more effective so I don't have to take Ibrutinib. Trying to put that off as long as possible. It took 12 years for someone to finally diagnose me. Very frustrating! But now I have great doctors at Mayo!

Hi Valcox

Welcome to NeuroTalk .

It is good to read that you are getting excellent care.

Best wishes.

Thanks Kiwi33,

Over the past 18 months I’ve tried to read everything about Anti-MAG PN that I can get access to! Your article from the GBS/CIDP Foundation was one of the first that I ever read.

There are different views on effective treatments. Most people agree that more research needs to be done but, as with most rare disorders, it is difficult to get the necessary funding.

I’m thankful that in Australia we do have access to government funded treatments and can try different options without suffering financially. And, so far, COVID-19 has not prevented me from continuing treatment in hospital.

I was diagnosed with anti-MAG about six years ago. Initially, my symptoms – numbness and pain in my feet – we're not a big deal, but things have progressed to a point where now my balance is gradually worsening, and I have sensory and motor issues in my hands. I've had IVIG and plasma exchange treatments, both with no side effects, but neither offered any improvement. Pain is managed nicely with Lyrica and Cymbalta. I'm scheduled to see my neurologist, and I'm sure Rituxan will be in the discussion. I'm inclined to try it, thinking it's the only thing that seems to offer some potential, but I am cognizant of the side effects, and the risk with Covid out there. I am 72 years old, in general great health, exercise frequently, and think I eat pretty well. All this said, I'm wondering if I'm missing something. Could diet change and/or supplements be worthy of consideration? What else? At some point, it's a matter of accepting and adapting, and just moving on with what I've been dealt. So, I would appreciate others thoughts on: anecdotal stories of rituximab – successes, side effects, risks with Covid, long-term treatment issues, etc.; anybody with experience with specialized diets – 525 protocol, Dr. Terry Wahl diet (I learned of these two diet plans from my participation in the mayo clinic chat group – check it out).

There doesn't seem to be a lot of recent posts to this forum thread. Am I missing something? Thanks a lot.

Hi Krysa,
It’s lovely to hear from a fellow Aussie! I’m under the care of a haematologist and neurologist in Melbourne. They both acknowledge that there is not a lot of experience in this country with Anti-MAG PN and I’ve found medical journal articles online that they hadn’t ever seen! So I feel as if we’re all trying to find a way forward together.

Initially, my haematologist wanted me to have a cocktail of Cyclophosphamide, Rituximab and Dexamethasone. At the last minute my neurologist changed it to Rituximab only as there usually worse side effects with the cytotoxic drug. However I still reacted to Rituximab, with several days of fevers and chills and then fatigue for two weeks. I only had one week out of three when I felt I had any energy.

At that stage I needed a stick to leave the house and couldn’t walk easily in the dark. Eighteen months ago I also had a sural nerve biopsy during the diagnostic stage. That has added to the numbness in my left foot and still causes constant pain.

In terms of management, I’m thankful that I have an extremely helpful husband and who drives me wherever I need to go. It has been very hard to have to give up driving, as is required legally for people diagnosed with PN. Before COVID-19 I was about to apply to be medically tested to regain my licence. I applied for a government health care plan, but didn’t get to start with a nutritionist or exercise therapist before COVID restrictions started. I support my legs and arms with extra pillows and sometimes a bed cradle at night to help with the pain. I tried Pregabalin (Lyrica) for a while, but it didn’t help and I try to limit my use of medications anyway.

The other significant help in facing my health problems has been my Christian faith and the support of friends across the world who pray for me.

What helps you??