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In June 2021, my 62-year-old husband was diagnosed with Ocular MG. Prior to his diagnosis he did have some osteopenia in his back. He was employed at the time.
During in the early stages of treatment he was on Prednisone, pyridostigmine, and Cellcept. The goal was always to get him down to a very low dose of Prednisone and use Cellcept instead. Cellcept also has side effects, however in our opinion it’s a much better choice than Prednisone. His Neurologist subscribed Cellcept (1000mg) within the first month of diagnosis, however, it takes several months before it takes effect.
From July 2021 to August 2022 he was on between 25-30mg of Prednisone. In early 2022, for 4 weeks, his Dr. began to wean him down to a total of 5mg of Prednisone however, he had another flare up. She then increased the dosage to 20 mg while increasing the Cellcept dosage to 1500mg. He still experiences symptoms so the dosage went from 20, then 30 and then for 4 weeks she puts him up to 60 mg to get his OMG under control. Shortly after that, the effect of his long-term use of Prednisone took a horrible toll on his body.
In June of 2022, he broke 5 vertebrae in his back! He initially went out on STD and is still on LTD to this day. His road to recovery has been long and difficult. Due to his significant fractures, the insurance company approved him to get 12 monthly Evenity shots to strengthen his bones. He had no side effects from the shots and currently gets Prolia shots 2x per year and takes 1000 mg of calcium daily.
During that time he remained on 5mg of Prednisone for over 14 months and went off completely in December 2023. He has been on 2000mg of Cellcept since October 2022. Even now after a long day, his one eyelid will droop some, but he vows he will never take Prednisone again. We are very thankful that he is doing much better but he will never be the same.
Our warning to every one is that high doses of Prednisone can be quite bad for some. I still wonder if the dosage of Cellcept had been higher sooner rather than later could he have gotten off Prednisone sooner? Please discuss it with your Dr. and decide what is right for you. Godspeed. Mary & Rich