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What is Primary hypotrophic osteoarthropathy?

Q: I am 34 years old and been living with swollen extremities and limited flexibility, although no pain, for the past 3 years. After numerous x-rays, a bone scan and MRI, an orthopaedic doctor has diagnosed me with a rare disease called Primary hypotrophic Osteoarthropathy (HOA). When viewing the x-rays, the fibula and tibia on both legs do not have a defined shape to them rather they appear much thicker than a normal persons. My fingers also look much larger than a normal persons hand. This condition of enlarged bones also occurs from my elbow down to my wrist. Accompanying symptoms include swelling of extremities due to water retention, which gradually gets worse as the day goes on. If I am able to raise my feet while sitting or lying down, the condition is not so severe, however if I do not, at the end of the day they become quite swollen. The doctor says that longer observation of the bones is needed in order to treat the condition. I haven't been able to find sufficient information on the topic. Can you please give me more information, including examples of this condition and where to look for information? The water retention is very uncomfortable and unsightly. Is there a treatment other than just lying down and waiting for the water to drain? Are there any medications that can aid in the easing of this retention, which causes reduced flexibility and limited movement?

A:Primary hypotrophic osteoarthropathy is a rare condition, which is seen in some persons. The cause of this is not clearly understood, however, the presentation is as you have explained. There is no definite treatment for this. Most patients are able to manage without significant disability. If you have gross swelling then you may need to consult a physician (not an orthopaedic surgeon) to manage the swelling without having to take recourse to a bed rest and elevation. The details on this condition are available on the net however all of them would be too technical for a lay person. As far as recent advances are concern there are some reports that Biphosponates help in some patients. Another drug used in breast cancer Tamoxyfen has been reported to be useful in two patients. These are all anecdoted reports not supported by solid evidenced based research. Do consult a Physician (Rheumatologist) for further advice.

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