I have been on the maximum dosage of mycophenolate, 3000 mg daily for almost 2 years. I quickly tapered up to that dosage in little over a month. For the first 6 or 7 months of this new med, I was also on 40mg of prednisone daily. I then tapered off of prednisone and have been prednisone free since May of 2024. In case you find it helpful to know, my diagnosis, which is clear as mud to me, goes as follows: I am a 60 y.o. female with past medical history significant for familial pulmonary fibrosis, non UIP pattern interstitial lung disease, suggestive of organizing pneumonia or NSIP type pattern, but without evidence of autoimmune disorder, but positive ANA (Rheum confirmed). Although I am not listed at this time, I beleive that my condition will worsen and that I will be listed for lung transplant surgery. Genetic testing has not revealed a specific mutation or disease.
In August of 2023 when I first began taking prednisone and mycophenolate in the amounts stated above, there was diziness on bending or stooping, muscle cramping, lack of patience, weight gain, swollen face, and sleeplessness. Today I am certain that only dizziness was related to the mycophenolate. The other symptoms tapered off in lock-step as I tapered off of prednisone. I have learned to come up slowly after bending/stooping, and not to jump out of bed too quickly. I consider these side effects to be very minor inconveniences. Good luck!