Lynda's story of Paget’s symptoms and treatment 

Lynda lives in Rhode Island, USA and was diagnosed with Paget’s disease when she was 55. 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. 

To anyone 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.