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Osteoporosis – necessary measurements

Question
[Please note that the original German question also included questions about the reimbursement from the health insurance. These parts were deleted from the question and answer since they are not relevant for the cross-national Central Archive.]

Dear expert team,

About the topic CF and osteoporosis I would like to ask the following:

About three years ago (at that time I was 44 years old) I had a bone density measurement done for the first time.

The values were in the range of osteoporosis.

I have always done sports, since more than 15 years I supplement vitamin D with 1000 I.U. daily (and many times other vitamins and calcium). Due to the resorption disorder and my underweight, I strictly follow a very elaborate, high-calorie diet (in the meantime partly parenteral nutrition).

The detected osteoporosis was treated with alendronic acid for three years. Under this therapy, the results of another bone density measurement in February this year [2013] only showed an osteopenia. The alendronic acid was discontinued, as it should anyhow not be taken for more than one or two years.

In which intervals should be measured now?

And how is it when menopause starts (I never had a regular menstrual cycle and it could happen that I notice menopause only after a year). Are there other intervals for the bone density measurement?

Many thanks
Answer
Dear questioner,

You would like to know how ofter an osteodensitometry (bone density measurement) should be done in CF patients.

Depending on the health status, and the result of the last performed bone density measurement (so-called Z-score), the bone density of a CF patient less than 50 years of age should be measured every 5 years, every 2 years or even every year (Sermet-Gaudelus et al. 2011*). For patients over the age of 50 (after the menopause), a different score is used to measure bone density (so-called T-score) and according to the values of this bone density score, the next measurement is recommended in 5 years, 2 years or 1 year. According to this paper, bone densitometry should be repeated after 12 months of bisphosphonate treatment (the mentioned alendronic acid) to assess response and then treated according to the above mentioned algorithm.

It has to be pointed out, however, that there are no recommendations yet, that are based on clinical studies, which indicate how often a bone density measurement should be done in CF patients. According to European guidelines (Kerem et al. 2005**) measurements in CF patients should be started at age 10; according to this paper, measurements should be done every 2-3 years or more often if indicated.

As you describe your situation it seems to be reasonable to have the bone density measured every 1 – 2 years (if your CF doctor is also confirming that this is necessary from a medical point of view and is giving the respective indication).

Best regards,
Dr. Christina Smaczny

*Serment-Gaudelus et al. in the Journal of Cystic Fibrosis 2011, 10 Suppl 2:S16-S23: “European cystic fibrosis bone mineralization guidelines.”
**Kerem et al. in the Journal of Cystic Fibrosis 2005, 4:7-26:”Standards of care for patients with cystic fibrosis: A European consensus.”
14.08.2013