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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Fibrous dysplasia


Other Names for this Disease

  • Fibrous dysplasia of bone
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Your Question

I am interested in reading the most up-to-date research on the use of bisphosphonate therapy in treating adult PFD. What I have found in my search so far is that while it does seem to treat pain associated with PFD, it doesn't actually stop the progression of the condition.  Also, I understand that long-term (over 3 years) use of bisphosphonates actually makes bones subject to fracture.  So I was just looking for some answers.

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

Can bisphosphonate therapy stop the progression of fibrous dysplasia in adults?

To date, bisphosphonate therapy has not been shown to stop the progression of fibrous dysplasia in adults, however it does appear to decrease bone pain and improve the appearance of bone lesions on X-ray.[1]
Last updated: 1/18/2013

Is the long-term use of bisphosphonates for treatment of fibrous dysplasia associated with an increased risk for bone fracture?

We were unable to find information regarding an increased risk for bone fracture in people with fibrous dysplasia who undergo short or long-term treatment with bisphosphonates. Rare but serious complications have been described in patients who received bisphosphonate therapy for other indications (e.g., osteoporosis). You can learn more about bisphosphonate drugs including reported side effects, at the following link to DailyMed.gov.
http://dailymed.nlm.nih.gov/dailymed/lookup.cfm?setid=4423d70a-b120-4653-bcf3-0c5ea8b97b0e

So far studies investigating the use of bisphosphonate therapies for treatment of fibrous dysplasia have been small and uncontrolled. Further information regarding the benefits and complications associated with bisphosphonate therapy for treatment of fibrous dysplasia is likely on the horizon. The National Institute of Dental and Craniofacial Research at the National Institutes of Health completed a three year, phase 2, clinical trial of Fosamax (Alendronate) for treatment of fibrous dysplasia. The clinical trial was entitled 'Alendronate to Treat Polyostotic Fibrous Dysplasia and McCune-Albright Syndrome.'  Click here to view the study information. In our search, we were unable to find published results from the trial. You can contact the National Library of Medicine (NLM) Customer Service for further assistance in searching the medical literature for published results.

National Library of Medicine Customer Service
Toll-free: 888-346-3656
E-mail: custserv@nlm.nih.gov

In addition, there is an ongoing clinical trial in Europe, entitled Effect of Risedronate on Bone Morbidity in Fibrous Dysplasia of Bone (PROFIDYS), that is investigating the efficacy of oral bisphosphonate to decrease bone pain and improve radiological appearance of fibrous dysplasia. Click on the title above to learn more.

Last updated: 1/18/2013

References
Other Names for this Disease
  • Fibrous dysplasia of bone
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.