@susanjohnston I’ve had 2 annual infusions, third one is coming up next week. Original plan was to do the three. I would expect 2 years off, then see. About 30 hours after the infusion I feel like I have a mild flu, headache, some body aches, lasts about 12 hours. Then no other side effects.
I see a local endocrinologist who handles the infusion, and a MD Anderson rheumatologist follows me and orders the DEXA at their facility. Once I started doing bone density there he really likes me to go back for consistency. I have video calls with him now, not in person. They are both happy with current status even though my spine increased 6% then dropped the next time. But it’s still better than it was. I attached a screenshot of my scores, if you’re interested.
I don’t take any calcium, it hurts my stomach and never seemed to help. I do eat a lot of foods with calcium and the docs seem okay with that. I take D3 2000 iu everyday. I now go to the gym 2-3x week, walk for 45 min 4-5 days, and do Taichi 3x a week. I know I need to do more strength training and are (slowly) adding it into gym visits.