Hi, All - I have anti-MAG antibodies, which cause peripheral neuropathy and nerve entrapment. I had a rituxan treatment two years ago that was very effective - until recently. I am told this happens and that some people end up just getting these treatments every six months for years. I decided to get another treatment. However, I can't find any information about the long-term detrimental effects of repeated treatments. Are there none? I would think that wiping out one's B-cells on a regular basis might have negative effects. Anyone know about this subject or where I could go to find out more? Thanks!

Hi Karen.
How long have you had the anti Mag peripheral neuropathy? How is it effecting you, sensory symptoms or motor symptoms. You mentioned you had some entrappment.
You mentioned you had had good result from Rituxan treatment. Did you have only one treatment?
I have been told by my rheumatologist to look up on Rituxan, she wants to give me this for Rheumatoid Arthritis and history of small vessel vasculitis, and I have very bad sensory motor polyneuropathy and the worst is the Small fiber neuropathy.

So, I understand you had good relief from neuropathy symptoms?

I tell you, if it helps for that, it is worth looking into.

You also said you had been researching regarding lon term ill effects from Rituxan.
Well, we know the immidiate side effects, which is mostly reactions with chills, drop in BP. Some people tolerate it well. People who have reaction to it, has it with first infusion, usually. So, if you had no reaction with first, good chances you will tolerate it in the future infusions.

BUT, the big concern is, the possible long term ill effects, as you mentioned.
I would think immunosupression will be of concern,

I came across an article from American College of Rheumatology, I will try entering the link, hope it works
http://www.rheumatology.org/Publicat...ncephalopathy/
this is regarding Progressive Multifocal Leukoencephalopathy which is rare, but occur mostly in immunosupressed persons,

Another lin to safety re Rituxan
www.fda.gov/Medwatch/Safety/Alert for Human Medical Products

I did read in Wikipedia that Rituxan was the most promising drug for Anti Mag neuropathy.
I hope you get your answers. Discuss it with your doctor

This med is very expensive. I see there are cupons from the drug company,

Thank you so much for replying and doing it in such a thorough fashion! I was diagnosed about six years ago. I am thankful that my anti-mag is not painful - rather, it manifests itself with a constant electric buzz, dulled feelings in my extremities, loss of balance, and fine motor skills being compromised (typing is a bear!) Almost two years ago I had two treatments two weeks apart. I waited about three months to feel any different but then I dramatically improved. So, it was effective for a year and a half. Unfortunately, the symptoms are now coming back with a vengeance. I received another dose last Wednesday and go back for a repeat next week.

I am sorry to hear you aren't doing well. I hope you aren't in too much pain. I would definitely go for the treatment at least once - I had only the mildest of stomach upsets and a little tiredness for a couple of days. But I should say I have no other health concerns to complicate the situation. Yes, that PML is a very scarey prospect! I hadn't thought of immunosuppression though and will definitely look into that.

I am very, very fortunate in that I have a super health plan. Can the doctor not help you find a way to reduce the costs?

Be well and thanks again.

hi Karen;
I will hope that the Rituxan treatment will work for you this time too. I will be thinking of you.
I have read your posts with interest, and that is because I have been offered the same treatment as you. And I was glad to hear it had worked for your neuropathy.

I saw my rheumatologist today. We discussed Rituxan treatment. She said Rituxan could be a good treatment for me because it treats rheumatoid arthritis, vasculitis and is also being used to treat neuropathy. So far,these two conditions mentioned are the two underlying conditions for my severe sensory neuropathy,

I had a temporal artery biopsy done last Friday, and we are waiting for result. This one test will tell us if there is large vessels in the form of Temporal Arteritis involved in my vasculitis.

So I just need to have a oral surgery and then a cataract surgery ( that is after we know regarding the vasculitis issue) Then I think I will reassess regarding Rituxan.

Again, I hope you have results.

Yes, I too have a good Insurance , but I have not gotten into the question re, the insurance coverage yet. I guess the doctor has to make her initial request for medically necesarry.


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