Hi-My grandson has been on steroids (Pulmison 20 mg, the 10 days on & 10 days off regime) for about the last two years. I'm a little concerned as his bone density scan has now revealed "severe osteoporosis" and we've stopped his steroids. He was on a chewable Calcium & Vit A supplement which obviously was not adequate.His Orthopaedic Paediatrician has now prescribed med's specifically for the osteoporosis and recommended that we phone his Neuro Paed. and advise him about the effect that the steroids have had & to ask how do we continue with his steroid treatment/dosage! Also, how often should our boys be going for bone density scans if they're on Steroids? Does the "Osteo medication" only halt any further detoriation, or is the damage reverseable? Please, if anyone has had a similar experience or any advice to offer??

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Hi Lesley,
Yes, osteporis is a side effect of steroids (I am not familar with your type??) and our doctor, Dr. Wong, watches it closely. We do a dexa scan yearly and I know that some boys are on the drug for it, but she NEVER takes them off steroids. I did find early in our diagnosis, that you need vitamin D3 WITH the calcium to help it absorb into the bones. My son, age 7, weight 40 (about the size of a big 4y/o) takes 2000 mg of Vit D3 and 1000 calcium. When we added the D3 to his regimin his dexa scans got better and have not declined in the 3.5 years on deflazacort.
Good Luck.
Lori
My son is on steroids (deflazacort) and has also been diagnosed with osteoporosis. He started on Fosamax last September and has done wonderfully on it. He's also still on steroids, same dose. His last DEXA (he gets them every 6 months) showed great improvement in his bone density. We're continuing the fosamax and will have another DEXA in August. Sam is also on 2500IU of Vit D3, but all his calcium comes from his diet (he's a great milk drinker and yogurt eater).
Calcium alone does not work for absorption, so you need at least the D3 daily as well. Kelvin takes 2,000+ D3 daily and takes Calcium with Magnesium with D3 too. He gets Calcium from food as well, cheese, ice cream, etc. Have to watch the fat and salt though. Kelvin's bone density was low before steroids, so it isn't only the steroids that effect the bone, although, most likely increases the situation. Kelvin's doctors never want them off steroids, after they start, and will work with whatever the problem may be. Michelle
Thanks for your replies and advice, especially about not discontinuing the steroids!

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