hey there. tomorrow is my first bloodwork return to the dr after my 2 rituxan infusions. no bad side effects until the 2nd week after the 1st one but the following week the cns was bad. couldnt read, write, hardly talk and was not safe to operate a vehicle on the public roadway. dr sent me in immediately for an mri and it was fine. the 2nd round however has been a completely different story. it put me down, the fatigue and pain was really difficult and i had to remind myself many times that i survived 103 plus fever for 2-4 weeks straight (that is always my summer flare for the last 11yrs) and i will get through this.
i havent seen any burning bushes with this drug. the only difference is i dont wake up as often (only 2-3 times) as compared to 5-6 times after 2-3 hrs of sleep running at warp 9. this all occurs after taking 9mg lunesta, 8mg rozerum, 150mg lyrica and valuim. pure craziness. it is as if i can actually feel the adrenalin coursing through my veins. i have talked with a psychiatrist and 4 neuro's who have no clue as to why this has been going on for 4yrs in october but assured me that although i am 'happy' at 3am and it feels like how one who is manic would feel, they are confident that i dont suffer from manic depression. i dont and never have had any 'self
destructive' behaviors associated with that illness unless cleaning house or going into work early qualifies for that.
i am currently taking 40mg of prednisone, 400mg plaq and procardia. prior to the rituxam, we have tried with no success cytoxan, imuran, cellcept and methotrexate. my main issue is sle, mctd, 'mytosis', autoimmune hepatitis, cns and discoid lupus. since the increase of the prednisone i have lost 17lbs from the middle of march to the 2nd infusion on the 6th of may. i only started at 120lbs.
i know i need to really ask the dr the hard questions but i know that i must. what is next medication wise or what is going to fail or be attacked next. i so what to have a positive attitude with this and do most of the time. like the rest of you i have seen my 'life' dwindle and i have had to cancel so many plans because the flares that come afterward are so unbareable and it is hard to justify being that sick when i know it can be prevented. my system goes into overdrive and 3-4 days later i am in a major flare that takes months to recover from.
anyway, thanks for listening to my fears and rambles. i will let you know wednesday the outcome of my lab and dr visit

.