Hi Tom,
I'm not in a drug free remission, but I'm probably as close as I'll ever get. I came off mtx on Wednesday and began a round of four weekly rtx infusions. I'm glad to be off mtx because of the hepatoxic effects, but also because the fatigue after taking it was more intense and lasting longer. My creatinine has been creeping up from the upper end of ok to borderline not ok. Hope the rtx takes care of that.
I got off pred during the summer of 2013, but started a flare with new kidney involvement after a couple of months. I went back up to 60 mg and, like you, slowly tapered down to 3 mg in April. However, I started having joint pain, so I unilaterally went back to 5 mg and things stabilized. I told my rheumy about the pred dosage and the increased side effects, and she ordered rtx.
I think I'll be on low dose pred for the foreseeable future - probably will settle at 3-5 mg. I'll also be looking at rtx at 12-18 month intervals.
I'm ok with all of this for now because I live a nearly "pre wegs" lifestyle. I'm fortunate.
Btw, I started out similarly to you with ear, sinus, and lung involvement. The ear damage was the only issue that's been permanent, but I hear ok with hearing aids.
Good luck on your journey!!
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
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