Zolendronate

[Ligeiael]

Been offered Zolendronate - but quite afraid of Jaw necrosis potential complication as have to have it via infusion. Any suggestions ? Thanks!

[ROSModerator Partner]

Hi Ligeiael ,

Welcome to our community, thank you for sharing here We just wanted to let you know that we have a bone matters session that discusses Osteonecrosis of the jaw (ONJ):

youtu.be/RRAYYT9vhP4(Not working as expected?)

We hear from a specialist doctor and a dentist about osteonecrosis of the jaw (ONJ). It’s a very rare side effect of some osteoporosis medications but it raises many questions and concerns. We tackle some of the misconceptions like not being able to have a tooth out if you take these drugs or never starting a medication unless you go to the dentist first. We provide the facts so you are better informed, can take your medication with confidence and can also get the dental care you need.

We also have more information on our website: theros.org.uk/information-a...

Hope this feels helpful

Wishing you all the best,

Lulu

ROS Moderator

[Ligeiael in reply to ROSModerator]

Thank you! Appreciated

[28Harvey28]

Hi. It is a difficult decision but it looks as if all of the treatments have risks, even the oral ones. I am currently on Romosozumab injections for 1 year and then the plan following is for at least 3 years of Zolendronic yearly infusions. I can understand how you must be feeling as I really didn't want to go onto any of these treatments. Until that point I had never been taking any medication ( not even blood pressure) so they all looked scary. In the end I had to weigh up my quality of life if continued to facture at the rate I was going and my Dexa scores/risks etc., The ROS website and Specialist nurses are really helpful. Wishing you all the best with whatever you decide.

[Ligeiael in reply to 28Harvey28]

Thank you for your feedback, will have a think about it - again, after my DEXA follow up soon, all the best to you as well.

[emersee in reply to 28Harvey28]

May I ask, how many fractures have you had?

[28Harvey28 in reply to emersee]

Hi Emersee. I have had 4 spinal fractures and 1 pelvic fracture. All fragility so have never fallen to cause these.

[emersee]

I had my first infusion a year ago, with no side effects. My DEXA scan in that ten months has improved hugely. I will be having my second infusion in the next few weeks.

[Graceissufficient in reply to emersee]

Great. Have you altered anything else in that time, lifestyle,nutrients, exercise, or do you think the improvement is just down to the drugs?

[emersee in reply to Graceissufficient]

After my first fracture in August 2021, I had severe Vitamin D3 deficiency, and of course menopause. I had been taking Vit D3 before I knew this but only for a few months.

So to get to this point, I have had 2 years Teriparatide, daily Vit D3/K2/Calcium. I have been going to a personal trainer in the gym I went to before - circuits for an hour twice a week and then 3 times a week at home. I cannot go for walks as I am hunched over and need a nordic stick when walking. I had my first Zoledronic acid infusion in January 2024, no issues and no more fractures, a much improved DEXA and could return to work in a modified role. So, it all worked for me.

[Ligeiael in reply to emersee]

I am really glad it worked for you. I had today my scan to see if I have deteriorated more or I am stable. Will take a decision after I got my result, in the meantime I will carry on with physical excercise, vit D etc.

[Graceissufficient in reply to emersee]

Well done. The NHS can't afford to scan the nation for D3 deficiency, but so many people would be helped if they knew they had it. I hope private testing for it takes off and is more available countrywide.

[emersee in reply to Graceissufficient]

It seems so many people in the Northern hemisphere are Vitamin D deficient, so it would be great if there were national campaigns in many countries to highlight this and advise that we all take supplements. It would save a world of pain and misery.

[Graceissufficient in reply to emersee]

I agree, and I think the amount recommended in the UK is too low. In particular the message needs to get out about taking 1000iu daily in pregnancy, and ideally privately testing D levels before getting pregnant.

[Armagnac]

I think a good dental check up before starting is a good idea. I had a tooth extracted 6 months after my first infusion. No problems.

[Ligeiael in reply to Armagnac]

I had it - but still in the process of deciding about what to do - I should have it via infusion and that has a higher risk for the jaw. Difficult decision.

[emersee in reply to Ligeiael]

I don't know if this will help.

I got dental braces 4 months ago, 8 months after my first Zoledronic acid infusion. I have no jaw issues at all.

[PoppyPaddler]

I was asked at my dental check up yesterday if anything had changed health wise so told him I had been started on alendronic acid 6 months ago. Dentist said that I should've been told to get a dental check up straight away. Having read about necrosis I was pleased he gave me what seemed a good check over.

[strongmouse]

Hi Ligeiael, I have the Zolendronic infusions and have had no problems. I had three yearly infusions, followed by a year off, a DEXA scan and then restarted the infusions last year.

I followed the guidelines - saw my Dentist to get my teeth checked. She thanked me for telling her, but confirmed that it is a very rare complication. I take Adcal supplements. My mother had severe osteoporosis, and so I am glad to be offered the chance to minimise the bone loss.

[Missus835]

No suggestions. It's an individual choice. My rheumy at the time missed the osteoporosis and called it osteopoenia. So I was a year late starting my Zoledronic Infusion. I now have 10 vertebral compression fractures. The last fracture was in April 2024. My second infusion was Dec. 2023. Is it worth the risk? The jury is still out. Atypical femural fractures are less than 1 in a 1000. I've just had a hip/thigh xray, due to new nasty pains in that area. Radiologist report says AFF, but my Osteoporosis Specialist says "it's not that" and she's been reading these xrays for 40 years. My GP says bursitis so I see a Sports Med Specialist on Tuesday for a possible cortisone shot. Maybe he will shed some light on it. I do now have to go for an actual bone scan (not DEXA). That said, the muscle spasms that come with these fractures are excrutiating. I also have PMR and Fibromyalgia. Cannot tolerate much more pain.If the ZA is working to protect my bones, then yay!

[FJMG]

I went to the dentist before hand. I've had three infusions with no problems and I grind my teeth in my sleep.