U.S. Paget’s Disease patient - new member

[Andilynn]

Hello All, I was diagnosed with PD of the right knee and femur at age 49. It seems to recur every four years and is back again for the 5th time. I’m always treated with Fosamax ( anywhere from 3 to 10 months). Is anyone else from the U.S. and has anyone else used Fosamax? I’m the only person I know that has this.

Best to all,

Andi

[Lisacity]

Hi I live in NY and I was just diagnosed with PD in my femur last week. My doctor recommended Reclast but Im hesitant to take it. He said a pill is fine also but I am to get a rheumatologists opinion. Hope you Feel better

[takka in reply to Lisacity]

I think that you are wise to get the extra help as some home doctors are not full up to date . One of my previous doctors recommended me a pagets treatment tablet to take as you would an asprin every day! For long time which is not done! Also you may need monetering for the pagets and need to be with those that are up todate . Best wishes

[Andilynn in reply to Lisacity]

Lisacity, Thank you for writing. I’m sorry that you have to deal with PD too. How was it diagnosed? The last time mine recurred, my rheumatologist recommended Reclast. I refused because I’d rather take pills. Once an infusion is in, it’s in...pills can be stopped if necessary. I was having infusions for lymphoma at the time too and didn’t want any more IV drugs. My mother had an infusion of Reclast for osteoporosis and said she never felt right afterward. A few months later she had a massive stroke and passed away.

For me, PD is an inconvenience, but not a huge deal. I hope it’s the same for you.

Take care,

Andi