Wow…good stuff! I just got back to the forum here and see that I’ve been missing out on a stimulating conversation between LindaH, MichaelJay and Norb.
How are you all doing?
I’ve been busy with some retirement projects like cycling around Nova Scotia (check blog at [url]http://www.terrypryan.com/cycle08.htm[/url]) and then Marian and I went to Greece for two weeks with three other couples. Since retiring, we only have one computer now and it is really slow at the cottage on dial-up, so I’ve been away from the forum for a while.
Picking up on the topic of anti-mag IgM levels remaining high even after treatment with Rituxan, I will recount the story of what my neurologist said. You will recall that I wrote a paper which suggested using the anti-mag IgM levels in the bloodstream as a determinant of when to prescribe repeat treatments of Rituxan. When I presented it to my neurologist, she said that there is no relationship between the two. This really shocked me, and I am still left wondering why!!! MichaelJay, your posting seemed to confirm this, especially given that you spent time with your doctor postulating as to what the reasons might be. And Norb, you have data to show that your anti-mag levels stopped declining for some unknown reason. I haven’t given up on this subject and will continue to pursue an answer.
I have another appointment with my neurologist at the end of the month at which time I anticipate EMG tests. In general, I feel that the Rituxan has worked. I have almost all of the feeling back in my hands now and my balance has improved. My gait has definitely improved and I am back to running again (albeit slow and only 4 km or so). All in all, I’d say that the treatments with Rituxan have been successful. But it is certainly not 100% yet, and may never be. Time will tell. I still have some numbness in the soles of my feet and occasional stocking and glove feeling from the ankles down.
Questions I would have at this time (perhaps unanswerable) are:
– will the improvement continue without further Rituxan?
– are further Rituxan infusions needed? If so, how many, how often?
– will there be any long term side effects of Rituxan?
– blood chemistry…what levels of anti-mag IgM do I have now?
– is there hope of 100% recovery, or is there permanent damage?
– can the IgM MGUS return if no further treatment of Rituxan is prescribed?
Unfortunately, the hospital makes me pay for the anti-mag tests. They run at about $800. I also have to pay for Rituxan of course (at roughly $4000 a pop). Hence you can see why I’d like to find out some of the answers to the above questions. By the way, I’ve applied to a government drug program in Ontario called the Trillium Program. Hopefully they will help out with the cost.
I agree with what you were saying Norb about the B cells without the CD20 markers. The fact that there is still anti-mag IgM being produced must mean that the memory plasma cells without CD20 markers can still play a role. I also wonder about the regulatory role of the T cells which should have jumped in in the first place to say that that particular mutant B cell clone should not be allowed to continue manufacturing protein to attack self.
By the way, if you check the website [url]http://clinicaltrials.gov/ct2/results?term=monoclonal+gammopathy+of+undetermined+significance&recr=Open[/url] you will see that there is a new drug being tested for treatment of IgM MGUS called lenalidomide. I don’t know much about it yet.
Other news from the director of the Canadian Foundation for GBS/CIDP is as follows: “[COLOR=”Blue”]I wanted to let you know that in the last few days I have heard of some good research that is going on with CIDP/MGUS – one of the doctors who is working on this is going to be making a presentation on this at our next National Conference next April 18th /09 in Toronto. She is a young doctor who was a recipient of the Young Investigator Awards that we gave out this past year. She works under Dr. Hahn in London. ALso later this fall there is a scientific research conference with some European neurologists who are working on this very thing as well, and so I hope that good things will come of this also.
Dr. Hahn is also going to speak at our next Conference next April on research and all that is going on. So mark your calendar as this will be a good thing for you to come to.[/COLOR]”
I am going to try to get in touch with this new young doctor to find out if she can answer some of the questions we have. And I will definitely attend the conference in April.
Sorry for my absense from the Forum. [Hi Allaug and Suewatters if you are reading this too]. I’ll try to be more responsive.
Take care all