I very much sympathize with your plight of having chronic pain while waiting for a disease to declare itself. Your description suggests that your doctors have done a thorough job in searching for underling disease and, as nerve-wracking as it may be, you and they may just have to monitor your health closely, and continue to carefully observe you and your health.
As they have informed you, your condition is what is called a Secondary forms of HOA(HPOA when associated with pulmonary disease); that is secondary to another disease including a wide range of pulmonary, cardiac, gastrointestinal, neurologic, infectious, vascular, and other diseases.
In the meantime, until some other problem becomes apparent (and this could be a long time from now) there may be other therapies (other than “a shot of prednisone”) that could provide relief. The best way to find out which therapy might be helpful would be for you and your doctor to request consultation with a Board Certified Rheumatologist. I cannot recommend any specific therapy but, in my reading on this subject, two drugs were mentioned: Octreotide & Pamidronate. You might want to ask the rheumatologist about these two.
Good luck
Hi Dr. Tinkelman,
Thank you for your response. I did see a Rheumatologist but he felt that he couldn't help me as he had only once come across one other case of HPOA, many years ago. I also see a Respirologist, who has ordered chest xrays, and ct scans. Today I had to go back to see my GP because of severe pain in my knees and he injected both knees and suggested that I try Calcitonin (nasal spray) for the pain.