Welcome

Welcome to the online community space of The Paget’s Association.

Here you can share your experiences, ask and reply to questions, support each other and become better informed about Paget’s disease of bone.

This is for you! Feel free to start using any area of this space.

If anyone would like to discuss queries outside of this online community the contact details of the Nurse Helpline of the Paget's Association are: email helpline@paget.org.uk or tel. 07713568197 / 0161 799 4646. We can also send information booklets by email or post.

Best wishes, The Paget's Association

5 Replies

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  • Thank you, it's great to finally have a forum to exchange ideas and experiences! lack of knowledge is more daunting than the condition itself! (Is it just me, or do you dislike the term disease'?)

  • i have just been diagnosed with pagets, i had a knee replacment which involved xrays and thats when it was discovered even though i have been told my blood test about 5 years ago should have indicated that i had it, i am very confused as i don t know what to expect from this condition, i am due to have my first treatment of ZOLENDRONATE on the 21st july and have to say i really don t know what to expect, i hope this web sight will help

  • I had the Zolendronate infusion in 2009 it is a wonderful treatment, it didn;t feel unwell after the treatment, and yearly bloodtests have shown to be normal, and my Pagets to be inactive since having had the Zolendronate treatment.

    Pagets was discovered in my Rt Pelvis after an xray taken after a fall in 1986. I was told at the time to Forget about it and spent the next few years in terrible pain which I believed to be Osteo Arthritis.

    It wasn't until 1990 when an orthopaedic specialist sent me for a scan that I was given my first treatment for Pagets disease.

    I was later given a Hip Arthroscopy in 1999 and again in 2008 which relieved the hip locking and saved me from having a hip replacement at that time, but I realise that I will eventually have a replacement hip.

    Having got my Pagets under control has given me back my quality of life.

    I hope you get all the help you need, The Pagets association have all the information you need to put your mind at rest and to give you support.

  • thankyou for your kind and reassuring words, its nice to know that treatment has done you so much good i hop i will be able yo say the same thing, and i hope you keep well.

  • If anyone would like to discuss queries outside of this online community the contact details of the Nurse Helpline of the Paget's Association are: email helpline@paget.org.uk or tel. 07713568197 / 0161 799 4646. We can also send information booklets by email or post.