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Bone Density

I have a great new IBD GI doc at UCSD now that has put me into remission (I think). She ordered a DEXA bone density scan based on previous steroid use. My former doctor had me on Entocort at varying doses for about 5 years. Before that I had one 4 month course of Prednisone in 1998, and lots of IV steroids in 1999 before I had surgery. Also a short 2 month course of Prednisone from August-October of this year.

Now my bone scan reveals that I have between 1.8 and 2.5 standard deviations BELOW normal bone density for my age/ethnicity/etc. It's pretty bad. I asked my step dad about it since he's a GI doctor and he said just regular Crohn's can give you lowered bone density too due to malabsorption issues.

Anyway, I have been referred to an Endocrinologist for followup. I am kind of dismayed/pissed off. My new doctor seemed to think it was mostly from the 5 years of Entocort use. WTF!!! Don't let any doctor keep you on steroids that long!!!
FYI, each facility has its own method of reporting standard deviations. For example, some only report them if they are less than expected. Others report them either way and the sign before the standard deviations (NSD) shows whether the results is negative (less than expected) or positive (higher than expected). For example, say a facility reports the NSD regardless of whether it is higher or lower... you have to look for a negative sign before the number which would indicate a lower than normal result. Also, with NSD usually anything less than the absolute value of 1.96 is not statistically significant (SS).

Have you had your blood calcium and vitamin D levels checked? The low bone density could be associated with absorption issues and not because of steroid use.

I've been a long term steroid user and and have had a DEXA scan. I've also had my blood Vitamin D levels and calcium levels monitored. My DEXa bone density a little low, but not statistically significant (SS) overall.

My doctor initially had me add over the counter vitamin d and extra calcium supplements in the hopes it would help. My vitamin D and calcium levels didn't increase, so he now has me taking a prescription strength Vitamin D and even more calcium supplements. My issues are a result of malabsorption (bowels are not absorbing what I am ingesting) and not sole result of steroids.
I'm on 4000 IU of D3 daily and level is around 41 I think. Calcium level is good too. I spoke to my mom and apparently low bone density runs in the family as well so it might be genetic in addition to the Crohn's malabsorption and steroid use. Frustrating either way. I'll let you know when I see the Endocrinologist what they say.
FYI, calcium can be leached from the bones to the blood stream. This results in normal calcium blood levels, but depleting bone density.

I hope you get some answers :)