Another antiMAG IgM PDN
Have you been dx’d MGUS (Monoclonal Gammopathy of Uncertain Significance) too? This is what you might call a benign cancer where the B-cells are produced cancerously, but it is not “dangerous” in itself. It might, however develop into a malignant type, so it’s important to monitor it regularly. I have come across quite a few with MGUS, but not suffering from any nerve-disease, and even if I’ve known and corresponded with Norb for about a year now, I really don’t know if he’s having MGUS, so perhaps you can have one without the other.
I have both, and was treated for MGUS with Rituxan. Only afterwards, through this Forum, I found out that I had antiMag IgM PDN. On the blood screening the hospital saw that I had way too much IgM, but they didn’t know, or at least they didn’t tell me, that it was this that caused my nerve-pain and motoric problems.
Two years ago I was given Rituxan IV – unfortunately I don’t know how much, but it was calculated on the basis of my weight and height – four times 28 days apart. After each IV I started taking 70mg Fludarabine (another chemo) a day for five days. Except for a few mild side effects during the treatment period itself, I have been getting better slowly but surely ever since. Especially my motoric skills have improved, but the pain, even if it varies, also has become far more managable.
My blood is checked every 6 months, primarily the IgM level, and it has been well inside the normal range every time. I think if there had been a dangerous B-cell depletion, the IgM level would have pointed to the fact by being below normal.
On the basis of Norb’s musing about where the B-cells become “corrupted”, I would think, in my case, the chemo drugs cilled the bad B-cells off, and the new ones coming from the bone-marrow are healthy. If they are “healthy” because they have stopped multiplying like mad, or if they also have stopped producing the anti-mag type IgM, I don’t know – the important thing is that there is not so much IgM in my blood anymore that it is able to do my myelin any harm, whether it has the antiMAG “flaw” or not. I don’t know what will happen if I get a bad infection, though, if my nerve-problems then will increase again for the duration of the infection, or if will start the B-cells to run wild indefinitely again. I don’t know if I would want to find out.:eek:
In my case it seems that I won’t have any problems concerning long term use of Rituxan, because the way it was administered the first time, and together with Fludarabine, did the trick. (KNOCK ON WOOD!) But as long as I’m monitored twice a year I feel quite safe that any change will be picked up while still in its infant stage.
I really wonder why your antibodies still flurish if you’ve had a number of treatments already – I’m not familiar with the Pestronk Protocol even if I know about Dr. Pestronk.
Would be interesting to hear more about your case.
All the best from