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Lynda's Story of Paget’s Symptoms and Treatment

Lynda lives in Rhode Island, United States and was diagnosed with Paget’s disease when she was fifty-five. Here she explains how Paget’s disease has affected her. 

Prior to being diagnosed with Paget’s disease, I was found to have hyperparathyroidism and osteoporosis. I also have an immune deficiency and am on medical leave from my work as an attorney.
I have Paget’s in several bones. It is in my spine, hips, legs, shoulders, and my skull. Since I have other health issues, it’s somewhat difficult to tell which of my symptoms are from Paget’s, but I have experienced bone pain and headaches. Whilst I currently don’t have a lot of pain, the bone in my skull is starting to distort so I’m concerned about potential complications, such as loss of hearing. Thankfully, I haven’t broken any bones.
I had zoledronic acid about two weeks ago and had a terrible time. I experienced vomiting, a fever and bone pain, which lasted about five days. I’m still experiencing extreme fatigue, and lack of appetite. I’m hoping it works. It will be worth it if it does. I feel better now, and I am back to daily walks and hiking, but I worry sometimes that my skull will get worse and I’ll need more treatment. I will be having a follow-up appointment with my endocrinologist.

What would you say to anyone newly diagnosed with Paget’s?
I would tell them we are fortunate. There’s treatment that can put this in remission. I would advise them to join the Paget’s Association and all the Paget’s Facebook groups.

This was first published in the Paget's News Magazine.

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