hi everyone! i do hope this note finds you and yours well? it's anoher picture perfecct day here in lil ole hercules. the kind where you understand why people pay $625,000 for a 2bd/1ba 1000sf fixer in a questionalbe area!!! and i should know, im in the real estate/mortgage/financial business!

anyway.....dear hubby and i are seriously thinking of stopping my siezure meds. i was at the max for neurontin and it's not working,( so im currently tappering), so my rheumie and neuro switched me to lyrica (which is a dirivative of neurontin!) which im afraid to take and hubby doesn't want me to because of the side effects. now, the neurontin does help with the nerve pain (neuropothy) though. my other meds are prednisone 20mg/day (tappering too); plaquenil 400mg/day; cellcept 500mg/day; mobic 15mg/day; reglan, ativan, zofran as needed (nausea); kadian 120mg/day (long acting pain med); norco, oxycodone, and morphine IR every 4-6hrs as needed for pain (not all together!! :!: ). i do the cytoxan/rituxan as needed.

i have about 3-5 siezures a day, and am hoping that there is another med out there that will help without the side effects. im silly to think this(wish this), huh? or is this amount just 'normal' for a cns lupie with siezures ??? because if it is, then i think i will stop. im sic and tired of takng pills and am beginging to feel that it's the medications, not the lupus causing all these problems, which is my motivation really for this question. also, i feel (maybe falsely) that if i can get sezures under control,then i may be able to get some sort of life back. i really want to get back to work and im trying to figure out what that's going to look like now....

so what do you think? im sure some of you are going to say something profound and sensible (marycain!?!) that's going to be so obvious and make me feel silly for sure, but i'd rather hear it from you guys.

thanks everyone!