History: 4 tooth infections (same tooth) in 4 years. 5 courses of antibiotics. More toothache & swelling. Off to dentists (closed for 2 years due to Covid). X-Ray & exam…tooth needs to come out, & explains why root canal wouldn’t work. Good, yes please, I said. But due to fact I’m on low dose of pred, & I’ve had some adrenal insufficiency symptoms, she won’t remove it & said I will have to have it done at the hospital, she asks another colleague, as I just want shot of it, & he says no. Consultant surgeon phones three weeks later. She says that due to two years of taking Alendronic Acid, I am at medium to high risk of MRONJ, or necrosis of the jaw. She explains how awful that is. (I googled it, no way do I want it!) She says she will add me to 3 month waiting list for extraction while I choose what to do. She thinks it’s best to have the tooth ‘capped off’ & says it won’t be a useful, chewing tooth, but smooth on top, & no risk of adrenal insufficiency or necrosis of the jaw. I posted so others can see how taking pred & alendronic avid can affect something I felt was unrelated to PMR at all, but seemed very simple to me, just one tooth removal! Would love to hear if anybody has had ONJ, also known as MRONJ (M ronge, as she pronounced it!) or if people have had teeth extracted with no issues (also learned that it can take months for ‘wound site’ to heal)! DL has provided a good link for me to read about alendronic acid, but I’d love to hear any personal advice or experience, as I have to make my mind up whether to have it removed, or capped off (I’ve never heard of this flat topped capped off tooth, either!!) Thanks in advance!
Dental problems & alendronic acid…anybody had ONJ... - PMRGCAuk
Dental problems & alendronic acid…anybody had ONJ (necrosis of jaw) please?
Just let my fingers do some walking - it seems it is the alternative term for having a crown! Why not say that ,,,
hovedentalclinic.co.uk/blog...
I've just had a gold filling removed - after 50 years it developed caries under it! And had a vastly expensive ceramic inlay - "it will last longer" said the dental assistant when I winced! Doubt I will need any teeth in 50 years ...
However - I also had one done a couple of years ago in a root treated tooth. Both feel really good. Should do at the price!
My dentist was MIA for a month at the start of the first lockdown here while he did just emergencies until they'd decided how to deal with this, Since then everything is back to normal What is the problem in the UK?
Oh, that’s daft! Sorry, hadn't got round to that bit. I’ve never had a crown, but I thought they were shaped like other teeth, I didn’t realise they are just flat topped! I’ve lead a sheltered dental life!! Why didn’t she say crown? Strange!
My inlays are tooth shaped. The first one was into a tooth that was more filling than tooth - can't tell I have it. But neither are actually crowns, just fancy fillings. The temporary filling I had this time was flat and very impressive - wasn't offered the option for the cheap version though! The impression taken seemed to be more to get the shae o the opposing tooth so the ceramic matched that for bite.
No chance of a second opinion?
Next stage is to talk to my doctor, who will have received the letter…see what he thinks & test his knowledge of necrosis of the jaw. Then talk to me dentist again as if I choose the capping off method, it will be done at local surgery…LOL…unless she won’t do it in case of adrenal insufficiency!! She’s new, but was very thorough indeed…the only thing was that she looked shocked when I said I took steroids every day! She asked how often I take them…I said daily!! Um…interesting…! But I’m in no pain, the last infection has cleared up…I just don’t want any more of them! Thanks S x
Thanks..read it now, but not as she described as she said it won’t be a chewing tooth, and crowns are shaped so they are. Plus the tooth is 90% filling anyway, so nothing will be left to shape a crown round! We will see, moving away from the idea of extraction after reading the ancient mariners post this morning! S x
And to think that my Rheumy poo pooed my worry about AA hand having a complicated dental history with more waiting to happen. “ONJ?”, they said. “But it’s so rare and not worth worrying about”. My dentist is very relieved I didn’t take it. Personally I’d be asking about the risk of the infection risking the bone in the future and whether antiobiotics on a regular basis is realistic or advisable. Way before Pred but with another condition that drops the white cells every three weeks, I had a root canal that was chronically infected. It didn’t hurt other than I had an apparently inflamed sinus. It ended up in the bone and tracked through to a sinus in my cheek. Extraction was a blessing. My brother-in-law had the same as you with months of antibiotics and talking about capping and lots of pain that kept coming back after each course. Extraction ended his misery in days. So, capping it off, is that like papering over the problem? I grant you that the decision is a difficult one, but I think a conversation needs to be had about how it might pan out if they avoid extraction, without the spectre of ONJ shutting it down.
Using the excuse of having been on Pred and poor adrenal function is feeble; they do major ops with people on Pred and a shot of steroid on the day is routine.
Absolutely, thanks for your input. It was the dentist at local surgery who wouldn’t take it out there just in case I went into adrenal crisis…she said they couldn’t do anything to help me there & id be safer off in a hospital. At that point I though the hospital dentist would just remove it…but then she said about jaw necrosis. I have a long history of infection issues & was in hospital on about 7 different occasions in one year. Plus I take antibiotics for six months of the year due to repeated chest infections. I think it’s better for me to avoid the extraction, by the sounds of it, but I just thought some people may have personal experience & comment. Maybe it is really rare…but the ancient mariner’s post this morning made it sound quite horrible, pain, not eating solids, more pain etc. S x
My dentist reacted exactly as yours did. I can't take AA so I had one infusion of ZA. I then read about it a decided that I would have no more. Four years later I needed an extraction and my dentist panicked and referred me to the local hospital. I have bad teeth and have regularly had invasive treatment without problems so it was no surprise that a year later I needed another extraction. This time the hospital said there was no need to worry it was perfectly safe for him to do. I had no problem with either tooth.When I mentioned it to my rheumy she thought it was a lot of fuss over nothing. I asked why not give DEXA before giving AA/ZA, she said it wasn't necessary and was not the way it was done. However my dentists colleagues tended to agree with him.
I tend to agree with Snazzy, leaving the root does feel like papering over the cracks, although my mother had a root in her gums for years and it was fine.
The last tooth removed was at the front and I asked for an implant. All the same worries resurfaced. So I researched all the relative info on the forum, mainly in FAQs and went armed with printouts of scientific papers that gave the probability of ONJ at about 1.5%. This put his mind at ease and two weeks ago I had my implants inserted. So far it has healed well. Obviously this is just my experience. I hope this is of help and all turns out well for you.
That’s really interesting thanks so much for taking the time, very helpful indeed. I’ve been chatting to my neighbour next door (who took AA for five years after a broken arm & the dexa scan results were re bad). Her surgery drafted in a specialist maxillo facial/dentist who removed the tooth, but they wouldn’t do an implant she had to have a tooth on a plate. But I now realise why her tooth extraction never fully healed, even after a year. After 3 months the dentist just shook her head, apparently! It doesn’t seem that there’s any publicity about this, but if you dig, there’s lots of problems to be found!! S x
Have you thought about going off AA for a while before the extraction? I’m not sure how long you would need to be off it for
Thanks! It’s the first thing I asked! I can’t remember exactly, but it remains in your body for years after you stop it. I should have highlighted that in the post, sorry, as that’s something I wanted other people to know. I thought it was the solution, especially with a 3 month wait anyway. If I’d known some of these things I would have pushed for a dexa scan & only taken if I needed it. Just googled it, it’s up to 5 years! Could be longer, depends on how long you take it for. Aaaaaaaargh! S x
It makes no difference - the stuff is fixed in your bones. Probably for life. The longterm studies each time say a time slightly less than the time it has been in widespread use - i.e. some time after use for 5 years, it was 5, after 10 years, 10, after 15, 15.
They will tell you it's been in use for 50 years - for Paget's disease and there aren't that many cases relatively speaking. You only find the real long term affects once it is in widespread use and millions are on it. What makes me angry is they have medicalised a natural process - and are effectively forcing patients to take it"just in case". Same with statins ...
Too true. I’m pretty sure she said ten years but One web site said 5 years. It comes back to bite you, that’s for sure!
Even though it remains, does the amount that remains diminish with time? ie in the case of a tooth extraction, is it safer to be off AA for as long as possible before the extraction?
I don’t know the answer…yet…but I may find out next Tuesday! I know it’s no good if you wait 3 or 6 months, & I fear it’s more like 5 or 10 years, & who can wait that long after multiple infections or an abscess?! PMR Pro will be along to answer,Jim sure!
It is so long in the bones that it is thought the amounts doesn't change significantly. Certainly still present after 15 years they say - I doubt I will need a tooth out then ...
We must be twins! I'm in a very similar situation - on a 12 week waiting list to have an extraction at the hospital, after a troublesome tooth abscess requiring 4 lots of antibiotics and failed root canal treatment! My dentist did say something about the option of grinding it flat!! That's not a crown, which is tooth shaped, as I have several of those.
I've been on Risedronate for osteoporosis for the past 5 years, so was going to stop it a month ago anyway. However, like you, I now have the spectre of ONJ hanging over me.
The added complication for me is that I am due to start on Methotrexate when my allocation of Tocilizumab expires. My Rheumatologist wants me to have had the tooth extracted before I start MTX, as I would have to pause it for the extraction. I will be on zero pred soon, if all goes to plan, but I expect to have to take several mg when I have the extraction. What a carry on!
Keep me posted and I'll do the same. 🤞🤞 for us both.
Absolutely! Good to meet you. I think you’re a stage ahead as had failed root canal & may have a date for extraction? I only spoke to surgeon last week & received letter yesterday. Letter has gone to my doctor & dentist. I have telephone appointment with doctor on 22nd, will get his advice, he knows my bad infection background, then I will phone my dentist & ask her opinion, & if she would do the ‘flat capping’! Oh, & just what it entails!! Thanks for that..surgeon described it differently from a crown, & your description makes sense as she said I wouldn’t end up with a usable tooth to chew with!! ONJ…I’ve read a bit & don’t want it!! Did you see post by the ancient mariner who has ONJ…two days ago…asking for advice on painkillers as none were helping, & was ‘eating gruel’ only. I read that if you get it you have to live with it until part of the jaw dies. Surgery is very difficult. Sounds nasty, but I need to find out more yet!! I’m happy to take extra pred during whatever they do. I’m a bad patient after experience of lightning hitting drill in my mouth while it was in use…age 12! I don’t have a date for extraction yet, so have a bit of time in hand. Happy to be in touch with you to keep up to date, shall we take it to private message, called chat, on here? It’s not for privacy on my part, more because it’s not fully to do with PMR. I may do a post after it’s over to warn people, though! I was on alendronic acid for a year, but had bad stomach cramps & changed to risenodrate a year ago…even more twinned!! Like your name, Rugger, keen rugby fan here, just watched England vs Italy. Um…don’t understand, though, you were doing so well, virtually off pred (in my dreams, I tapered too fast & suffered my own stupidity!) So why the MTX? Don’t reply if you don’t want to share, or share privately, if you wish!! Just interested to know, as your twin, as I don’t want to go down that route, particularly!! That’s it for now…let me know if you have an extraction date, please. The next info I will have will be on 22nd. Has your surgeon agreed to do the extraction, & just warned you about ONJ, or MRONJ? Mine wasn’t keen, & put in the letter that she had made sure I was fully cognisant of that disease…in other words, if I go ahead & then get it, it’s my own fault!! Bye for now, isn’t life fun?? LOL! S x
I nearly had a similar need for an extraction of a molar ... Dentist said she has had patients on Biphosphonates (AA / Risedronate) with no issue and would extract the tooth in her surgery. I’ve been on Risedronate for 2 and a bit years (AA for 6 of those months). Currently 5 going on 4.5mg Pred. I was going to start a new thread asking whether the dosage of Pred (5 and below) required continuing use of AA / Risedronate. And how long it stays in the bones after stopping. I think the answers are in this thread already. I’m shocked that if 2 or 3 years of AA takes the same amount of time to return to normal, bone-wise.
Yes, the ‘after time’ was a message I wanted to pass to others…I thought if I gave up risenodrate for 3 months, all would be OK!! My dentist in surgery didn’t mention ONJ at all, her fear was me going into adrenal failure in the chair & all she could do is call an ambulance as they have no way to treat it there. ONJ was the main feature of the hospital dental surgeon, who thought that increased pred would deal quite happily with the adrenal situation.
Thank you. This important thread of yours needs to be pinned for all to see, or add to FAQs.
Thanks. I think it might need tidying up, but I’m happy to do it after my next consultations. I’m also in discussions with my twin, Rugger, who has the same issue. PMR Pro has written about alendronic acid already & there is a mention of ONJ, so would have to see that linked, too. I think many people on this forum may need to have a tooth extracted in the years during, or after, alendronic acid and steroids for PMR/GCA, and that’s why I felt it important to post.
I've just had an extraction by dentist after a year of Pred and AA. I found Royal Osteoporosis Society factsheet helpful. theros.org.uk/information-a.... I would like to know how other peoples extractions have healed.
I think you would be better starting a new post - this is an old thread and only a few people will see your comment because of the way HU works.
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