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Paget's Association

Effective treatment for Paget's disease of bone

Zoledronate has been repeatedly shown to give excellent control of overactive bone cells in Paget's Disease of Bone and is also effective for pain arising directly from the condition. There is a wealth of evidence to show its benefits. All drugs have risks and it is the minority of patients who suffer from side-effects of treatment. It would be good to hear, via this forum, from the majority who have a positive experience of treatment. We draw your attention to the following paper published in the Journal of Bone Mineral Research: A Single Infusion of Zoledronic Acid Produces Sustained Remissions in Paget Disease: Data to 6.5 Years. Ian R Reid, Kenneth Lyles, Guoqin Su, Jacques P Brown, John P Walsh, Javier del Pino-Montes, Paul D Miller, William D Fraser, Susan Cafoncelli, Christina Bucci-Rechtweg, David J Hosking (2012) Sep; 26(9):2261-70.

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When you state that it is the minority who suffer unaceptableside-effects fromthe infusions I would be interested in stoe statistics. I too would like to hear from those with positive experience as all I have heard and read so far i negative and on this basis I am exremely reluctant to commit to the reatment.

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We agree it would be good to have some posts on here from those with a positive experience. You will find written experiences of patients on the Paget's Association's website.

Zoledronate has been studied in a randomized clinical trial comparing a single infusion of 5mg with oral risedronate. After 6 months, 96% of patients receiving zoledronate had a therapeutic response compared with just 74% of those randomized to risedronate, with ALP levels normalizing in 89 and 58% of patients, respectively. At 2 years the response was 98% vs 57%, and by 6 years this was 87 and 38%, respectively. The zoledronate group showed a quicker response and better effects on quality of life, including pain. Zoledronate is generally well tolerated, although there is a risk of flu-like reactions, which can be reduced by the use of paracetamol or NSAIDs. Relevant studies below. there is also a wealth of information in the newsletters of the Paget's Association which are available in the members' area of the website: paget.org.uk

Relevant studies:

Stephen Paul Tuck1, Robert Layfield, Julie Walker, Babitha Mekkayil and Roger Francis. Adult Paget’s disease of bone: a review. Oxford University Press on behalf of the British Society for Rheumatology. 2016.

Reid IR, Miller P, Lyles K et al. Comparison of a single infusion of zoledronic acid with risedronate for Paget’s disease. New Eng J Med 2005;353:89 908. 37

Hosking D, Lyles K, Brown JP et al. Long-term control of 5 bone turnover in Paget’s disease with zoledronic acid and risedronate. J Bone Miner Res 2007;22:1428.

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Hello Mary. My husband has had zoledronic acid infusions. It is fantastic. He had really nasty flu like aches for a couple of days after the first one but even that was weirdly encouraging as he felt like it was confirmation that his skeleton was soaking up the bisphosphonate, so he knew it was getting to his Pagetic bone. He felt much better by the third day and fine after that. He had no side effects after subsequent infusions, which is apparently normal. It completely shut down his very active Pagets and reduced the pain amazingly well. Highly recommended!

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