Hi Rob,
Welcome aboard. I second Gilders and Dale's thoughts. You've been on cyclophosphamide too long. Methotrexate or mofetil (cellcept) might be better maintenance drugs for you. Rituxin can knock down flares and give some intermediate term (6-12 months) relief. You may also want to talk to your docs about weaning off prednisone. If you get the OK, just remember that slower is better. Just stopping your meds (especially prednisone) is asking for big trouble. When I weaned off prednisone (I'm at 3 mg/day and holding now), I started down at 5 mg/week from 60 down to 20. Then I dropped 1 mg/week down to 15. I then dropped 1 mg/month down to 3. My creatinine got a little squirrely, so my doc and I decided to hold there and see what happens.
When I see my wegs doc in April, coming off methotrexate is on my agenda. If she allows me to try it and I'm successful, I'll starting weaning off prednisone later in the year.
The fact that you're still working productively bodes well for you. If you need a wegs specialist, you can find one here: VF Medical Consultants They will usually consult with your local doc free of charge.
Good luck and better health!!
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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