Alendronic Acid: Hi I've had PMR for over 4 years... - PMRGCAuk

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Alendronic Acid

Simplewish profile image
15 Replies

Hi

I've had PMR for over 4 years now and am on 3mg pred. as the last time I managed to reduce and come off pred. I had a flare up . I also take Alendronic Acid. I've had toothache in a lower back molar on and off for the past year and the dentist says I either need root canal work or have it extracted. I've seen the consultant at the hospital and because I'm taking Alendronic Acid it affects the jaw bone and if I have the tooth extracted it may leave the gum open to the jaw and will never heal. I've decided to have root canal work but will have to pay privately for this as NHS dentists aren't paid for doing it. As anyone else had problems with lower teeth ?

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Simplewish profile image
Simplewish
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15 Replies
Pixix profile image
Pixix

Yes. Six infections in about 3years. Then 6 dentists who wouldn’t extract it. Same as yours. Sorry, I dont have time to write it all out again, somebody coming at 8am, & I’m not well today. If you look up my name, then you can see my posts. I have written all about my dental problems. If you have any queries, do ask!! I, too, was refused by a hospital surgeon. I was offered root canal, costing £800, but had another infection & the dentist said it would all fall apart if they did that!

WhatNoCarbs profile image
WhatNoCarbs

Yes. I understand, but fortunately have not experienced jaw issues with Alendronic. I‘m on it myself. You have to be very wary of it and I would suggest come off it if you are having jaw problems. (I have no medical quals so check with GP 1st.) It is a very serious side effect of the Alendronic, which you cannot get back from. It is why they limit the use of it - basically the jaw bone starts to disintegrate if I understand it correctly. Sorry to be so negative and sensationalist.

PMRpro & DL may be able clarify further.

All the best with it.💞

PMRpro profile image
PMRproAmbassador in reply toWhatNoCarbs

"PMRpro & DL may be able clarify further"

We have, a lot. Pixix knows all about it. But stopping the AA probably doesn't make any difference as it is in the bone and never leaves.

Oh-my profile image
Oh-my in reply toPMRpro

I'm hoping I live long enough to have none left in my bones. The half life of Alendronic acid is 10 years and the adult human skelton is completely replaced in about 10 years. Amazing when you think about it.

WhatNoCarbs profile image
WhatNoCarbs in reply toOh-my

Doesn’t quite add up! I suppose aiming on the positive, if I’m in my late fifties now, feasible for me to replace my entire skeleton with no disintegrating osteoporosis bones by 70 and perhaps the AA too?!!🤔 I suspect that without a lot of exercise that may not be the case!

GP stated that some people do the 5 yrs AA course, but with no osteoporosis improvement (my Aunt being one apparently). GP should be sending me off for another DEXA scan in Dec, so will see then. Not sure I’ve done enough exercise to see enough improvement. GP wants to wait a decent period before the 2nd DEXA, so that a definite improvement can be noted, so perhaps stay on AA until then. He stated the DEXA is not that accurate! At the moment I’m in the middle of the red osteoporosis zone on the graph. Think the results were something like 2.2 on hip and 3.4 on spine - not great!😕 I’ll continue with my walking…although slight current set back with anaemia now! Ho hum!😂

Oh-my profile image
Oh-my in reply toWhatNoCarbs

If it stays be same after taking Alendronic acid it could still be seen as a win as we all lose some bone density yearly whether on Pred or not. I think there are other treatments (chemicals) that actively increase your bone density more than AA and a new one that does both - stop the loss and increase - but not sure if it’s available in the UK. Walking is good. Even better if carrying something heavy. Listened to a Michael Mosley podcast on the benefits of Nordic walking. If I can get myself good enough I might give it a try.

Hope your next DEXA scan is a good result.

WhatNoCarbs profile image
WhatNoCarbs in reply toOh-my

Thanks for response. I’m gradually bringing my walking up again. Once I hopefully get back to where I was before the anaemia diagnosis, I’m going to try adding weighted backpacks and maybe the Nordic walking sticks. I know one can get weighted vests which someone had some success with. Someone also said the recommended 10000 steps a day, which I’m having difficulty fitting around work. Manage 2 miles each day which only equates with about 6500steps - better than nothing! Thanks for kind thoughts for future scan.

Rynn33 profile image
Rynn33

Hi Just to say my Rheumy stopped prescribing Alendronic Acid under 5 mg Pred - said it wasn’t necessary below that - so you might want to check if you can come off it especially if you’re on it for 4 years already.

WhatNoCarbs profile image
WhatNoCarbs in reply toRynn33

For me, I was put on AA for osteoporosis after a DEXA scan, not because I was on pred. Have you had a DEXA scan ?

Rynn33 profile image
Rynn33 in reply toWhatNoCarbs

I was in a different position- my DEXA was normal so the AA was given when I started Pred.

PMRpro profile image
PMRproAmbassador

If your bisphosphonate has been the oral form and the normal osteoporosis dose, the risks are extremely small. The necrosis problem usually is in patients who have received bisphosphonates as part of oncological treatment - it is used to direct calcium to bones rather than to other body tissues, especially in breast cancer. I'm surprised at a hospital consultant being quite that reticent. However - you can't really get past them unless you shop around to get another opinion as Pixix did.

Dance62 profile image
Dance62 in reply toPMRpro

Hi , I'm on AA, 70mg and also have a lower back molar problem. The tooth is already root canal filled and has a crown but is often niggling and really needs to come out. My dentist seems to know very little about AA other than to say I should check with my rheumatologist. I've tried that, can only speak to a nurse with a message and what they say is stop taking AA for 8 weeks, then if all is well and no infection I should start taking it again. I assume I'm only taking it because I'm on pred, but if I had known the dental implications when it was prescribed I'd have been more reluctant to take it in the first place .

As I've only been on it since October last year, and will be down to 5mg of pred mid June, I think I understand from your message that my risk would be low? Maybe I should ask about coming off it all together when I'm down to 5mg pred?

Thank you so much for your advice.

PMRpro profile image
PMRproAmbassador in reply toDance62

Blowed if I can see why stopping it for 8 weeks would make a difference!

This FAQs question

willowglendentalspecialists....

says

"Can I Have Extractions Done If I Take Bisphosphonate Drugs?

It is typically advised to avoid invasive dental treatment such as a tooth extraction while taking bisphosphonate drugs. If possible, it is recommended to salvage the tooth with a root canal and crown rather than having the tooth removed from the mouth.

If the tooth is unable to be restored with root canal treatment and requires extraction, the patient will be encouraged to:

Stop smoking (if applicable)

Practice proper home care

Attend all dental check-up and cleaning appointments

Rinse twice daily with prescribed chlorhexidine mouthwash twice daily prior to their procedure

Because Bisphosphonate drugs last in the bone for a considerable amount of time even after stopping the medication, it is typically not recommended for the patient to stop taking their bisphosphonate medication prior to tooth extraction. Instead, the dentist will work with their patient to promote the healthiest oral health possible to encourage healing and prevent osteonecrosis."

It is pre and post extraction care that is critical, not stopping a drug that remains in the bones indefinitely. But this US dentist doesn't seem averse to carrying out an extraction - even in the highly litigious USA so they obviously don't think it is that risky.

Dance62 profile image
Dance62 in reply toPMRpro

Thank you for your advice - it seems every dentist/rheumatologist has a different opinion . Not easy when you're trying to make decisions!

PMRpro profile image
PMRproAmbassador in reply toDance62

I know, Prof Sarah Mackie is very concerned about the poor uptake of and resistance to bisphosphonates and I was discussing it with her when I was faced with taking one recently. I explained the problems patients have getting dental work done and dentists reluctance to work on patients on AA - and after all, it is difficult enough to get dental treatment in the UK anyway! She said that when she speaks to dentists she gets a very different reaction - don't know where she finds her dentists!! I spoke to my dentist here in Italy who wasn't in the least fazed and just said I needed a panoramic oral x-ray to identify any hidden inflammation, a thorough hygienst clean beforehand and 2x a year thereafter. Scrupulous oral hygiene is key.

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