Hi Bev,
I'm taking bactrim DS (800/160). I weigh about 175 lbs.
At disease onset and for about 16 months following, I took oral cytoxan (50 mg @ 3x/day). I was briefly switched to Immuran, but had a horrible reaction to it, so back onto ctx. Shortly after the Immuran episode, I found this forum, and I decided to go to Cleveland Clinic for evaluation and treatment. At CC, Dr Villa Forte immediately took me off ctx. After a two-week break, I started mtx. My dosages ranged between 15-25 mg/wk. I started on pred at dx with 60 mg/day. Other than a voracious appetite and resultant weight gain, I had no problems with pred. I eventually tapered off pred, and was off it for about 4 months before I started having symptoms. Dr VF then prescribed four infusions of rtx (stayed on mtx), and that knocked down what was a small flare.
I was on mtx until August 2015. I had another four infusions of rtx and discontinued mtx because the fatigue I was getting from it was starting to interfere with my active lifestyle. I just had a single dose of rtx last month. My current wegs meds are 5 mg/day of pred and bactrim DS 3x/wk. I could probably go a little lower on pred, but it's easier to count out one pill a day instead of 3-4.
At disease onset, I had ear, sinus, and lung involvement. My other symptoms included a cough with a little blood and night sweats. With treatment, all the issues resolved although I do wear hearing aids (wegs added to the hearing losses from military service and loud work environments). The 2013 mini flare did cause a little kidney damage, but nothing too serious.
My other meds include norvasc and flomax for hypertension and urinary symptoms. I also take caltrate since pred has caused osteopenia. I also take Claritin and Phenylephrine to avoid sinus congestion.
Hope this helps, otherwise, just continue asking questions...
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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