Anyone had ONJ while on a bisphosphonate?

Posted by sebutler @sebutler, Feb 28 11:34am

Docs tell us that bisphosphonates only rarely cause ONJ. So I was wondering if anyone on this forum has gotten ONJ as a result of being on a bisphosphonate for osteoporosis (not for cancer). Might be helpful to have our own survey, since so many of us are scared of taking the drug. Also, if you did get ONJ, how was it treated, what was the experience like, and are you all healed now?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

shelmadine | @shelmadine | Feb 28 6:47pm

Yes, I developed ONJ. It changed my life…chronic jaw pain, osteomyelitis after extracting several teeth and partial dentures today. Very costly, expensive and painful. Also many dentists who weren’t educated about this issue at the time and this left me vulnerable with delayed treatment. I would not advise biphosphonates for anyone, but you may not have the experience that I had. I sBut is it worth the risk? One must weigh the decision. I still have chronic pain and quality of life is greatly compromised.

sebutler | @sebutler | Feb 28 7:20pm

I am so sorry to hear this, shelmadine. May I ask: How long were you taking bisphosphonates? Was it for osteoporosis?

dawnplanta3456 | @dawnplanta3456 | Feb 28 8:44pm

I have written before that I had surgeries for 2 atypical
femur fractures almost 4 months ago. Recently had a Dexa scan which could only be of my arms because of metal in legs and deterioration of spine due to the fact I am 90 years old. Unfortunately my t score was -5 on my arms.
What to do now? Waiting for appointment in May with osteoporosis clinic.
In the meantime time I am walking at least 2 miles a day and participating in exercise classes 5 days a week.
Look forward to some input on this problem.

shelmadine | @shelmadine | Mar 1 5:07pm

In reply to @sebutler "I am so sorry to hear this, shelmadine. May I ask: How long were you taking..." + (show)

Yes, I was taking Fosomax, then Actonal for 2 years for osteoporosis. Thanks for reaching out. We just really need to inform each other with our experiences. This is a good site for that. Take care.

sebutler | @sebutler | Mar 1 6:56pm

Thank you for the additional information. Yes, this is a great forum for learning all the in's and out's about osteoporosis. I am indeed sorry about your chronic pain. It can't be easy.

didamco | @didamco | Mar 1 7:44pm

In reply to @shelmadine "Yes, I was taking Fosomax, then Actonal for 2 years for osteoporosis. Thanks for reaching out...." + (show)

I too since 2005 years been on Fosamax and Actonel as follows with a 7 year breaks in between :
Fosamax (alendronate sodium 70mg-bisphosphonates )
1-Nov-05 1-Jul-10 1 every 2 weeks ( standard is 1 per week) then 2.5 year break
1-Jan-13 1-May-14 1 every 2 weeks ( standard is 1 per week) ceased due to dental work needed and dentist wanted me off drugs for at least 12 months
Then 7 year break
Actonel ( risedronate sodium 35mg-bisphosphonates)
21-Oct-21 31-Jan-22 1 per week (standard is 1 per week)
31-Jan-22 25-Nov-22 following blood results dose reduced to 1 per fortnight
25-Nov-22 12-Nov-24 following blood results dose reduced to 1 every 3 weeks
ceased in Nov2024 as had been on it for 3 years - albeit at reduced dose
I am now 70 years old and have been put on half dose Evista since Jan 1 2025 .
Will be reviewed in June 2025 with endo
My DExa in Dec 2024
Spine -2.3
Left femur neck -2.2
Right femur neck -3.0
TBS 1.37
I am on Onero program and have my own physiologist for weight training as well as walking up and down hills every day & running on a treadmill 3 days per week. Also have private pilates with physio each week to make sure I work all internal core muscles to help with Stabilising spine and hips etc
I am not expecting Evista will do much - so interested in Evenity experience.
I also have osteoarthritis in spine hands ankle and knees so have to keep moving

gently | @gently | Mar 2 2:24am

In reply to @dawnplanta3456 "I have written before that I had surgeries for 2 atypical femur fractures almost 4 months..." + (show)

dawnplanta3456, you might consider Forteo. The medication hastens healing consequently alleviating pain after fracture. It will work to resolve the brittle bone caused by bisphosphonates and build new bone. Calcitonin nasal spray is sometime prescribed to help with fracture pain. Sometimes surgeons will prescribe Forteo. You might call their office.
May is too long a wait for osteoporosis medication. Could you get in on a cancellation.
The walking is great be careful in those exercise classes.
Two atypical femur fractures in both legs?

rjd | @rjd | Mar 2 12:55pm

I needed a tooth extracted when I had been on weekly Fosomax for almost 4 years. No problem.

Had I known then what I know now, would have likely been concerned and wondering whether I ought to have a short drug holiday before extraction....but it was not possible to wait very long in any event.

sebutler | @sebutler | Mar 2 2:05pm

Thank you for sharing this, rjd. I suspect I will have to be on Fosamax for at least a year (and have terrible teeth), so this is good to hear.

broken13 | @broken13 | Mar 3 9:36pm

In reply to @shelmadine "Yes, I developed ONJ. It changed my life…chronic jaw pain, osteomyelitis after extracting several teeth and..." + (show)

That is so awful. I also experienced ONJ near the end of my first shot of Prolia which was recommended after 24 months of Forteo. I then switched to Raloxifene and did well for 5 years on that, and now on another course of Forteo. May I ask what you are taking now?