Hi. Angela from Australia here. Was diagnosed with Wegeners Gpa (severe)4 years ago or so. Had cyclophosamide infusions for first 6 mths or so alongwith usual high dose prednisone. Since that initial time have been on Azathioprine 200 mg and varying lower doses alongwith off and on pred.

Doctors now realise the Azathioprine hasn't been working. Anca has been going up gradually. And have now prescribed mycophenolate mofetil 1000 mg daily which I start on Monday. They have also said I may go on Rituximab in future.

Looked up some info on the myco mof and its side effects - aren't very attractive at all. Has anybody had experience being on this and did it help? And did you experience side effects? - serious ones?

Not looking forward to going on this medication.
Already have low white cell count and shot liver enzymes , low globulin, stomach problems, gerd, thinning hair from wegeners treatment

Kind regards and thanks for any info on the mycophenolate mofetil

angela