I just registered at this site and had a question about your numbers and needing rituximab again.
I'm currently on my 11th month of cytoxan and my anti-ds-dna numbers just came back at 1,160
(Our lab is negative for lupus at 99 and below.) This is the second time they have come back over 1,000.
When I was at 6 months of chemo, they were 1,500's, so the Mayo Clinic kept me on it for 12 months straight. Before, when I could barely walk, didn't know where I was, they were only in the 300-500's. :wink2:
Nothing seems to get them under control. I just thought I was finally tapered down off the steroids to 4mg--trying to get all the way down to 0, but I started flaring again. At least the numbers verified I wasn't going crazy. They just barely bumped me up to 10mg...I wonder if I will ever be able to get off steroids in my entire life?
I'm only 34.
Do any of you have any experience of what they do after 12months of cytoxan and no improvement. I have CNS lupus with a lot of encephalopathy, o-bands, lesions (but no new ones since the cytoxan). I think they are talking about taking me back to the Imuran and possibly trying the rituximab???
I'm supposed to fly all the way back to Rochester, MN for a final dx on the MS with the Lupus, but they are only going to take my blood and urine which they do here at home every week. I do not see the need to fly up there and can't afford it!
Thanks for any advice. Confused and don't know what to do! My neuropathy is killing me and the stress of all of this only makes it worse. My rheumie had the nerve to tell me to see a shrink if it was making my neuropathy worse and go see my neurologist. I'm already on the max of neuropathy meds. I already take 32 pills a day. I DON'T NEED ANY MORE> Thanks for the vent! Happy Holidays! And thanks for letting me join!
Have any of you ever heard of someone having outrageous positive anti-ds-dna numbers but not having active disease? Can you find any research supporting this? :rotfl: Just looking for something! ! HAPPY NEW YEAR TO ME!!!!:lol: