I am finishing the 2 Year bone shot Forteo. I need to start the next medication, something like prolia. Because I have a history of teeth problems, I am really scared of the drugs that can cause necrosis of the jaw. I would appreciate hearing from anyone who has developed this.
I have had pmr for 9 years and am on 8 mg. Of prednisone. I have had 8 fractures and in 2022 lost 4inches in height. The pain and disability is awful and life changing. I have no choice, I must try and save the bone I gained with the forteo.
I wish 9 years ago I would have gone on the bone meds. I was just too afraid of them🤔
I can’t afford to make the wrong decision this time.
Thank you for your responses.
Written by
Linny3
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The usual option would be an oral (risendronate or alendronate) or infused (zolendronate) bisphosphonate. Prolia has similar downsides to the Forteo as if you stop it, you lose the improved bone density because of a rebound effect, The bisphosphonates stabilise the gained bone density and you can stop them after a time.
The risks of necrosis are there with any of the drugs but are probably least with the oral bisphosphonates, followed by the zolendronate infusion, The risk is higher with the infusion but not usually with the doses used in rheumatology - it is the much higher doses used in oncology where the patients don't get one infusion per YEAR but one infusion ever 3 to 4 weeks, 17 times the dose.
Apparently necrosis is rare. The Royal Osteoporosis Society in the UK posted this video which I found reassuring (although my teeth are in reasonable condition). youtu.be/qUFb12hd9c0
I've increased my dental appointments to twice yearly and hygienist to 3-4 times a year too.
I take risedronate as I had established osteoporosis before being diagnosed with GCA/PMR and put on pred. I checked with my dentist who told me in his 30 plus years of practice, he had only ever seen it 2 or 3 times and it was patients receiving chemo therefore very frequent bisphosphonate.
I was assessed as high risk of jaw necrosis and a hospital specialist refused to extract my tooth, despite 7 infections over 4 years. My dentist refused, too. But she was concerned by the high amount of infections, so talked to colleagues. She found one who had worked for many years in big London hospital. She said she’d try & help. She spent twenty minutes talking to me about necrosis…& I nearly ran out of the surgery!! She made me sign to say I understood I could get necrosis of the jaw and that this was an extraction of special difficulty. Once she got the tooth out, she found necrotic material down at the jaw bone level. She continued to remove all the horrible material for a long time & showed it to me (yuck!) Thenfollows a long waiting period. I healed well, & was very very careful about after care. She was very pleased at the checkup. I still don’t have the all clear, but I’m very hopeful that I’ve dodged the bullet!! Best to get dental work done before starting biophosphonates if there is treatment outstanding,I would say. Covid also had an impact. My first 3 infections occurred while dental surgery was closed, & antibiotics prescribed over the phone!! Good luck!
Oh, yes. Sorry, I guess I thought that would be assumed! I as on Alendronic Acid, but it gave me stomach trouble, so moved onto Risenodrate. 3 years in total.
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