Reply To: rituxin for people WITHOUT the anti-mag type neuropathy

May 10, 2012 at 2:07 pm

sanjay–i will look into that study ….thanks ๐Ÿ™‚

Dawn–the whole cancer risk is why my Dr is being so cautious and making me go through the upper gi, lower gi, pelvic biopsy, etc. Partially due to my age-48, and because my neuropathy COULD be parneoplastic due to the vgkc antibody. Its strange, that it is definitely immune related—and possibly paraneoplastic. This means that the immune system is possibly reacting to an underlying cancer that has not been detected yet. The ultimate solution, if this is the case would be to find the underlying tumor and treat that.—but since being unable to find any tumor, not sure exactly what to treat the immune system with. Sometimes, the immune system can suppress the tumor and the result is the nerves suffer–ie neuropathy. Anyway the choice was rituxin due to the least long term effects on other organs. It only takes out your b cells leaving the t cells—which means less chance of catching things while on it. Will need to be careful of fungal and bacterial infections though.
I have been told rituxin has fewer side effects and risks than most immunosuppressants. I did see earlier posts,I believe the name was tously hyde—and i think it was a child receiving rituxin? maybe he/she will respond if still on, and give you some info on rituxin and children. that is a good point on the puberty, that would be great if Kevin’s immune system straightened itself out then ๐Ÿ™‚
Rituxin is being used with great success for rhemotoid arthritus, The nurses in the infusion room where i go have seen success with it for that. My dr has two other patients on it, one who was in a wheelchair and is now walking with a cane, and another who is just in the process of starting it. They are both a lot more dehabilitated and older than I am, I do feel she is being over the top cautious in my case–and im sure it’s because of the antibody that could possibly be cancer related.
I asked about immuran and cytoxin, but she said she would rather my try the rituxin. I trust her opinion, even after going all the way out to minnesota and spending a week with the legendary Dr Dyck, I still trust her opinion over his.
If i ever get started on it I will post and let you know how it works and side effects so you will know for Kevin. I will get 1000 mg 2x. 10000mg wait two weeks then another 1000mg. then nothing for 6 to 9 months. she said if it works it will take 3 rounds like this. That part i like. Plus she said i should know right away if it’s going to work. It’s not one of these you need to take for nine months only to find out it’s not going to work. These were the things i was hopng i would get others who have tried it to post about.
Im glad you are still on here posting— we have lost so many people since the board changed. would be nice to see it up and running like it was prior to the changes. Take care Lori