Hamptons

I am interested to hear answer. I cracked a tooth which was meant to have a crown. Now May not have enough tooth for crown so May have to have implant. Concerned as reacted after filling.

Paprika60 in reply to Hamptons

Let's hope there will be more responses to compare and consider! 😀

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Ncut in reply to Paprika60

I’m following this post, as I’m having problems with my teeth or lack of them. I’m thinking this will be my next line as I can’t wear the denture I have.

I too have lupus and taking hydroxychloroquine and mycophenolate amongst other medications.

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dg70

Me too I lost two teeth last year I'm sure from Sjogrens and want to replace at least one of them. I was told I would need a bone graft and this may be the more difficult issue for us to deal with. Apparently upper teeth often have nothing to fix an implant in to so a bone graft is necessary. I found an article which said there isn't necessarily an issue with implants but like anything you could go to the expense and with our immune systems the way they are it may not take properly or is rejected when implanted. I'm going to ask at the dentist in a couple of weeks and pursue it from there. I have to have Adrenalin free anaesthetic too but apparently it works the same just takes a little longer to kick in. Hopefully age isn't an issue too. I'm early fifties but I have an Indian friend who went back to India a couple of years ago and had several done at once (far cheaper than UK) and she's 74. Hopefully someone out there in cyberspace has had it done who has Lupus/Sjogrens and can advise.

Paprika60 in reply to dg70

Hi, thanks for your reply. My dentist assures me it is fine and my lupus doctor says fine too.However, while waiting, I searched further into the metal implant material, Titanium and it turns out it could leak toxin to one's body and create so much health risk for rare cases. It isn't just for teeth implant but also the case for hip replacement and etc. This is really scary for me as I am already suspecting the possibility that the metal fillings done thirty years ago could have caused my auto immune condition. I may just have to opt for the long bridge option even if it is of old technique as I just cannot face another layer of illness. I have more than enough with vasculitis, lupus and Sjogrens. Yikes! 😂. Yes, I know plenty of people who have had implants and love them but none of them have our conditions. We are special. 😅

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KayHimm in reply to Paprika60

Paprika -

I see you talked to your rheumatologist. That is positive that he isn’t concerned about the material. Of course, most of us would be! I think it is a natural response because we react to so much. I thought for many years that my UCTD was caused by quitting smoking - like a shocked system - until a few years ago I was talking to an immunology nurse at a coffee bar about smoking. I mentioned mentioned my symptoms came on after smoking and July 4th vacation in Cape Cod. We both looked at each other - it wasn’t the smoking but the sun at the beach! I related events that happened around the same time.

Maybe it was not your fillings but another trigger beyond your control.

Hope the implant is a big success.

Kay

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Barnclown

Yes…I had an upper left molar replaced with implant in 2010-11 when I was late 50s & my infant onset lupus virtually unmedicated. I TOTALLY LOVED my implant for 10+ years, but then ran into probs:

That molar had to come out! Its 1992 root canal had failed almost immediately & the infection had gradually spread into upper jawbone (osteomyelitis) becoming pockets of bacteria driven chronic sepsis (my then dentist had told me ‘lots of patients have persistent niggling symptoms after root canals).

So while the long drawn out implant phases were going on, I was on 6 months of long term high dose daily flucloxacillin with our 🤞we could avoid full on facial reconstruction surgery

Anyway, I thoroughly researched the lit on lupus & implants + jawbone osteomyelitis…we de used I was too young to leave a big gap + my Sjogrens dry mouth rules out removable dental appliances… so we proceeded with implant (inc bone graft).

AND that implant seemed fine until this year! I’m v conscientious about oral hygiene, so that’s not why the flippin implant literally fell out into my mouth ine morning in January ☹️🙄

Well, am now with a different & much more high powered dental practice near my Univ Hosp in cambridge …so I trusted them to lead in deciding what to do. Basically, we ‘think’ this molar implant failure isn’t due to either osteonecrosis related to my IV bisphosphonate osteoporosis treatment (NB if you haven’t already, discuss those sides of your health with both your rheumy & dentist before having an implant) OR the chronic osteomyelitis flaring…the lead partner in the practice decided we would just leave the gap & monitor the situation…🤷🏼‍♀️Several months on, it’s so far so good…&🤞…

Apparently only approx 2-3% of dental implants fail…just my luck 🤣🤣🤣🤣

Glad you posted…hope something in there is useful…& hope you’ll let us know how you get on in making this decision etc 💞💞💞💞 Coco

Paprika60 in reply to Barnclown

Hi Coco, Thanks for your response and sharing your experience, advice with me and those who would benefit. The problem is that my Rheumy doesn't know much about dental implant (he only sees from the point of taking antibiotics and painkillers) and the dentist (established in central London and well regarded) doesn't have any experience on patients with auto immune conditions. I knew that some of my relatives (healthy) have to have the implants done more than once as it doesn't work first time around. But hearing that it fell out as you described is horrifying! Like a screw that got loosened. Sorry to hear you have had to experience that. But great that you have now got a very good team. That is already half the stress gone. To be able to trust and rely. Believe me you are not the only one in that 2-3% minority. I think many here in HU...which is why we all share and support one another.I have decided not to go ahead. It is way too stressful and to think that I would be an exception to the rule is a bit like living in a La La land. 🤪

Hope you are enjoying the sun in your field. Take care! 😍

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Barnclown in reply to Paprika60

😍 LOVE your La La Land simile 👏👏👏👏

you’ve clearly been doing a really good job of researching this…funny thing: am actually relieved & comforted by you knowing others whose implants failed (interestingly, at the mo am meeting scoliosis folk on our U.K. support group forum whose instrumented fusions have failed…they’re explaining how their medics deal with this…🤷🏼‍♀️so WHY do docs tend not to credit us with the ability to process these sorta outcomes WHILE WE decide whether to undergo a procedure? My impression: docs just avoid conversations if at all poss 🙄).

Yesterday had a 6monthly pandemic tele review with my rheumy so we discussed the implant thing re my next IV bisphosphonate infusion (due late this summer after another dexa scan). She is in charge of my osteoporosis care, and both my dental practice & she expect me to share what’s happening on this front. So, yet again, we need to be our own care coordinators/advocates 😅

Anyway, now I’ve had approx 2 months without that BIG molar, an getting used to the BIG gap back there…so thinking I could’ve got along ok without installing that back in 2010-11

Are you having the trouble teeth extracted? Am sorry you react badly to antibiotics, but it’s good you’re aware + making sure your docs are too! Will you consider some sort of non invasive false tooth replacement thing? I’ve been avoiding these cause my CTD/AID/PID oral issues set in so early in life & have been a constant curse + the Sjogrens was early onset etc etc…my dentists have always worried about irritating the highly reactive sort tissues in there…interestingly: the oral surgeon who dealt with the implant failure prompted me to think back re any possible signs it was coming loose, and 😯 OMG I realised had been treating small inflammations in the gum on either side of the implant for about a year …he said: that’s because the implant was moving too much! FASCINATING

For what it’s worth: Knowing what I do now, if I were offered an implant now & had all your complex comorbidities + adverse antibiotics reactions + that struck + belimumab treatment etc, I’d probably avoid this surgical process…even if I weren’t on bisphosphonates for osteoporosis, I’d probably have the extraction/s & take time to see how that went before taking further action. (But I was only at the beginning of learning about AIDs etc…& I my oral surgeon pressed me to go straight to implant after extraction cause he asserted that postponing implantation surgery was more complicated etc….well, I DID get 10+ good years out of my implant, but I do wonder if trouble might’ve surfaced had immunology not had me on long term daily antibiotics + IVIG./SCIG all this time due to my Primary Immunodeficiency Disease giving me what they call “chronic pockets of bacteria driven sepsis in several body systems including that jawbone involved with the failed root canal molar

Am so glad you posted.. this is a great discussion… exactly when I am needing to mull this subject over…you’ve helped us all…THANKS 💞💞💞💞

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Paprika60 in reply to Barnclown

Hi Coco, sorry for my late response. I was away from my computer for a few days. First of all, I should let you know the following response from my new Lupus doctor who kindly responded to my email despite his surgery absence : If you are on a bisphosphonate drug e.g. alendronic acid (aka alendronate) then you should stop this prior to the procedure and not resume until at least 8 weeks afterwards.

It seems you are on this drug Coco.

He didn't know if I was on this as he was responding from his home (didn't have my file) but he told me to skip Belimumab just one week before the procedure.

But of course none of this is not necessary as I decided against the implant altogether.

As for bridges, I have lived with extensive bridge works for four decades! I have had it since age 20. Four major ones, two are 6 teeth bridge each and they are both held by three real teeth inside. For me they have been the safest and most comfortable but then I don't know any better as I had never had implant done. I know you have excellent dental hygiene routine as I do. I have kept them so well that they have lasted three more decades than expected. All dentists I had in my past both in US and here were so impressed with the work. But indeed one has become loose recently on one real tooth side and this means two other support teeth (my own) are still very intact so the dentist cannot take the bridge off. He has to break one by one gingerly to get them off my support teeth in order not to damage them as they are precious...otherwise I would be in trouble. So I recommend that you consider and discuss bridge work instead of implant if you are missing only one tooth and you don't want implant again. This means your dentist will have to skim two of your real teeth to use them as support for the three teeth bridge. Yes, of course it doesn't make sense in modern dentistry which loves implants. But all the health complication that may come your way, it is a safer choice. And these days they do 100% ceramic bridge, not partial metal and partial ceramic. So I would think there is very little metal toxic potential there. Dentists love implants because they train for that and it makes more income for them...and it is most advanced I suppose.

Do watch Bleeding Edges, a medical documentary on Netflix. It shows the danger of metal implants (of all kinds!) inside our body and how corrupt US medical world can be partially...and it probably applies here in UK to a much less degree but it is there.

I am surprised to hear that your dentist said implant moves inside you. Mine told me implant doesn't unlike our own teeth. That's why they never do implant based on one other real tooth support as the real one moves and the implant metal (stud) won't budge and therefore create future problem. They makes sure it is based on metal support on both sides if the implanting requires multiple teeth coverage.

I wouldn't leave a missing tooth space in the long term as the empty space will make the rest of your teeth to move more and it may also cause other issues. If you read Breath by James Nester, you will see how importantly/ biting act/mouth structure and breathing/health condition matters.

That's it for today. I must go for a walk as I missed it yesterday.

Enjoy the weather!

😍🍀🦋

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Barnclown in reply to Paprika60

😯THANKS: VVVVVV HELPFUL re bridges etc. Am seeing my dentist before long & had been planning to report on several months of this with this gap & now you’ve helped me a lot to get my head around options 👏👏👏👏

👍 Yes, exactly: One reason I went for my molar implant because I was young enough to have a lot of chewing ahead & didn’t want my teeth moving due to the gap (it was quite a huge molar). &, inevitably, back then when I was considering & researching dental implants, there was plenty to read on the science re osteonecrosis, bisphosphonates & implants. Of course, dental implant science continues to evolve & the NHS expects all patients + dentists + rheumatologists etc to discuss timing, pauses of bisphosphonate etc etc etc. So my medics & I always have taken my bisphosphonate treatment into account & still do…especially as I also have this history of chronic osteomyelitis in the upper left jawbone. Osteonecrosis & osteomyelitis manifest similarly in some ways & can overlap.

& 👍 Yes: dental implants should never move! So if they actually do move that’s a red flag sign they may be failing. …so, my oral surgeon explained that in fact the earliest signs my implant was had begun failing were the ‘movement’ causing little inflammed gum ulcerations in the gum abutting the implant’s fake molar - these lesions etc had been flaring off & on for about a year before the implant/molar fell out…but 🤷🏼‍♀️ I’d done the ‘keep it simple, stupid’ thing: assumed these inflammations were just more of the AID/CTD-related oral inflammations/lesions I’ve been managing all my life.

Interestingly, on my U.K. Scoliosis support group forum, am also learning the ins & outs 😉 of spinal instrumented fusions like mine failing….delightfully, this happens often enough so the health establishment has christened it: Failed Spine Surgery Syndrome’ 🙄…ie the screws & rods implanted along with our bone fusions can fail: they start moving about, become dislodged, even break, causing inflammation etc very like a failed dental implant…& true to form, when my instrumented fusion showed signs of failure, I simply assumed it was taking a long time to heal or something…but my new spine surgery team have proven the surgery has actually ‘failed’ - in my case there are multiple reasons for the failure, but I’ll spare you those 😅

So, despite all my researching etc & considering etc…going with the best possible practitioners…conscientious follow up & rehab etc, re both my dental implant & my instrumented spine surgery, I’ve turned out to be one of the few whose fail 😟…well, it is what it is

Thanks again for posting + getting this wonderful discussion going 💞💞💞💞

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Paprika60 in reply to Barnclown

My word, FSSS (failed spine surgery syndrome)! I have never heard of this! I could make some sarcastic remark on this name but I won't. We have to take all things doctors come up with well and calmly. You have gone around the medical block many times and over Coco! 😂 You seem to keep strong and stoic about all your challenges and I can only say KEEP GOING! I am trying too. But my issues seem very little compared to all yours. Enjoy this amazing day. I am having a little break in between light gardening. Stay well. 😘

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Barnclown in reply to Paprika60

🤗 you’ve cheered me up: thanks 💞💞💞💞…am just another zebra, but cause am 68 & my stuff started so early, it’s had loadsa time to heap up …so when an experienced 🦓 like you with severe illness deploys exactly the right phrases to acknowledge my situation, i feel stronger, better able to keep going “Just Like That”. Same thing goes for my rheumatologist’s report re our tele review this week, which also validates several of my most recent unusual diagnoses via spine surgeon & Gastroenterology , ie using the terms ‘Failed Spine Surgery Syndrome” + “Chronic Intestinal Pseudo Obstruction”, “Chronic ischemia reperfusion injury”… In our 11 years together, this is probably her most comprehensive, specific & validating report yet. I do like folk who talk straight❣️ imagining you in the garden making the most of this fair 🥰

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KayHimm in reply to Barnclown

BC -

I totally understand why you want a concise and description diagnosis. I always thought of you as someone with chronic pseudo obstruction - maybe you mentioned it directly - but it is so important to get the difference in these conditions. Do they say the ischemia is related to the gut damage? Nerves damaged? Or are those two different systems?

😘😘

Kay

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Barnclown in reply to KayHimm

Yup, when a rheumatologist report actually features diagnostic terms formerly featured in other clinics’ reports (ie Spine surgeon: the failed scoliosis spine surgery syndrome & gastroenterologist: the chronic intestinal failure + pseudo obstruction), I feel this is as it should be: after all, she is the lead re my AIDs & CTDs + she has always verbally acknowledged these multisystem AIDs & CTDs are involved in both my spine stuff (mainly due to the hEDS + added AID inflammatory process, early onset osteoporosis etc ) & my GI stuff is mainly down to progressive multisystem debilitation from hEDS + SLE especially the neuropathic & vascular issues, & of course the Sjogrens & vasculitis play into this mouth to exit GI debilitation too). The fact there are lots of question marks about the science re these aspects of this sorta stuff is a given: The Lit always states this loud & clear…these issues are not fully understood, but that doesn’t mean they can’t be acknowledged

& yes: there is no question that my slow transit dysmotility affects all my body systems (even in non🦓s chronic slow transit as severe as mine is toxic to the whole body for obvious reasons) & is at the very least partly down to the same sorta peripheral neuropathy causing the severe Raynaud’s ischemia in my feet & ankles. Currently the concensus is that the severity of my version of this neuropathic+vascular ischemia is compounded by all my very early onset AIDs + CTD going without systemic meds until my 50s.

Hope that makes sense 💞💞💞💞

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Paprika60 in reply to Barnclown

Thank you very much!!! 😍

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Hamptons in reply to Barnclown

I am interested in your root canal. I had a root canal in 2018 and was meant to come back for crown. I held off initially as the tooth remained tender and was told this can happen. Then the world closed. I have not snapped the tooth so made much drama for myself. However, the tooth is still tender and when it snapped was painful but assured this was just the gum.

Would an x ray show If there were infections or issues?

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Barnclown in reply to Hamptons

Oh Gosh! Sorry about that! If this were happening to me, I’d definitely see the dentist asap & ask for as thorough an investigation as he can give you. His xray equipment really SHOULD be able to show infections & other issues….& he SHOULD be skilled at interpreting this sorta imaging

For what it’s worth:

in my experience as a rare diseases patient, the calibre of xray at any dental practice & the calibre of the xray interpretation depends on many factors…not all dentistry imaging equipment is equal…& not all dentists have experience caring for 🦓s inc knowing what to be alert enough to spot in imaging… eg back in 2010, even though my dentist said his X-rays showed no probs despite the symptoms in the roof of my mouth & jawbone persisting through several courses of antibiotics, my GP promptly sent me to hospital for X-rays….

Those hospital X-rays found ‘lucency’ in the jawbone associated with my failed root canal molar…& that lucency was enough for my rheumy to rush me onto long term gp high dose oral flucloxacillin while referring me to ENT + MaxilloFacial clinic for further investigations & monitoring 🤷🏼‍♀️…so I’m always cautious re dental practice X-rays.

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Hamptons in reply to Barnclown

Yes, you have made me wonder as that area tender up in my cheek. There this week to repair another cracked tooth so May ask for X-ray of the crown tooth. Must muster my make a fuss mode

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Hamptons in reply to Hamptons

Thank you for replying so thoroughly

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Barnclown in reply to Hamptons

😆👍 yep! Love your ‘muster my make a fuss mode’…you’ve made my day! Good luck 🍀💞

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Barnclown in reply to Hamptons

PS 2012 U.K. study re FBSS: no one in my spine unit teams or my pain clinic team has even hinted there is such a thing as FBSS 🙄

ncbi.nlm.nih.gov/pmc/articl...

So, this was published 10 years ago

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jacamac

I had 3 implants, two crowns on upper teeth 5 years ago and never had a problem. All done with local anaesthetic in 3 different occasions. I have SLE, take hydroxychloroquine 200 x2 daily. I also have asthma and not sure whether it was asthma or Lupus but my dentist applied to Gen Med Council and all work was done through NHS ( I live in Scotland). Pain afterwards was managed with paracetamol and ibuprofen and took around a week. The only residual is that I now suffer from sensitive teeth - my advice is go for it, I feel 100% more confident in my smile now 😀

Paprika60 in reply to jacamac

Thank you for your response Jacamac. Gosh! Your dentist is an angel. To go through the trouble of applying for a grant for your implants and that you are doing well with it. Well done and you are very fortunate! Can't find anyone like that in London here! Hope you continue to have trouble free dental condition. Take care. 👍😀

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Titters

Hi Paprika. I can’t say my implant lower molar is total success or failure. Although I probably would not do it again. What they may not explain to you is there is now a certain bacteria that likes to hide and aggravate the area around implant. I’m almost 10 years I’ve had to have the crown removed and the gum receded surgically and then sprayed/ rinsed with strong antibacterial. Stitched up and then I wait for new crown as the crown removed invariably breaks. This particular problem affected my back molar so badly I had it removed when time came for a crown on it. I don’t miss the tooth at all and my implant has settled. Just do research on dental implant bacteria and see what the ramifications are. Best, Titters

Paprika60 in reply to Titters

Hi Titters, thanks for sharing your experience and the suggestion. I am assuming the bacterial infection can occur regardless of an excellent dental hygiene. My dentist never mentioned this to me. He thinks it is the best thing in the dental technique evolution...well he has trained for it and he makes bundles from it. In my case, I have decided against the implant due to the potential danger of titanium toxin leaking through first but now more so. I get very ill with antibiotics and my God, I would be not be happy if I have to take antibiotics often because of the implant. It has taken me several days but I am now very certain. Thanks for alerting this issue! 🙏 Good luck with your new crown!

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gemim

Hello Paprika60,I have SLE & Sjogren's and had a dental implant about 4 years ago. I had it done with local anaesthetic, took ibuprofen and antibiotics afterwards and have had no problems with it since. At that stage my SLE was stable and Sjogren's was mainly effecting my eyes as opposed to my mouth. Since Covid & Covid vaccines arrived, my Sjogren's has flared and I have had dry mouth over the past couple of years. I would be more hesitant about having an implant done with a dry mouth and all the associated infection risks, so thankful to have got it done when I did. It is great to have at least one good solid tooth that I can bite on! I take Azathioprine and a very low dose of Hydroxychloroquine and had the implant done when I was 60.

Trust you can get enough information to make a broad risk assessment and measured decision. In the end, it may be your gut instinct which guides your decision.

Praying for you as you weigh it all up.

Gemim

Paprika60 in reply to gemim

Hi Gemim, Thanks for your response. Yes, I agree with you that I should go with my gut instinct. When my dentist explained it thoroughly and carefully after my initial reaction against it due to my condition, I was persuaded. But I had this niggling feeling which is why I wrote this post. When I went against my gut instinct, I tend to get into trouble. Not always but... I had a stroke after having my first infusion of Rituximab. My Lupus doctor at St. Thomas's Lupus Clinic had never experienced this before. So he didn't really want to touch it and passed my case onto a new younger doctor who just joined them. He didn't want to admit anything. So utterly without compassion or empathy. To think that a doctor would behave that way! I left the clinic soon after. So no more Rituximab for me. So thank you for reminding me not to ignore my gut feeling! And thank you for your prayer. All good wishes to you. 🌸

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gemim in reply to Paprika60

So sorry to hear about your reaction to Rituximab and the way in which the doctors' 'disclaimed responsibility'. May you have peace about the right way forward.

Gemim.

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KayHimm in reply to Paprika60

What a horrendous story. If there ever was a time a doctor should express concern and empathy, it is in that sort of situation. He certainly should have explained all the research and what his thinking was. And he would have to report your serious reaction to Rituximab.

Yes, trust your gut feeling. There are procedures they can do instead of implants. My friend decided against them and is pleased with her results.

🌸

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Paprika60 in reply to KayHimm

Over the years I have come to realise that the medical profession offers the same sort of reality as our social world. Some very nice and kind, some not so, some indifferent and uncaring and everything else in between. The ambitious ones can be tricky too. I now know when to avoid the uncaring ones by choosing someone else. Thank God we have a choice!😅

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KayHimm in reply to Paprika60

Yes!

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BaltimoreMDgal

My concern would be with analgesics ... my rheumatologist told me NOT to use ibuprofen (Advil) as it can trigger a flare.

He said Naproxen Sodium (Aleve) was safe.

Best of luck!!!!!!!

Paprika60 in reply to BaltimoreMDgal

Thank you so very much for this tip! I have never been told this in 22 years of going to hospital for my condition. I used to take ibuprofen for joint pain years ago but now I don't take anything if possible. I succumb to paracetamols if I get horrendous headache. But even that is rare. All these eventually damage kidney...I will look into Naproxen Sodium. Many thanks! 🙏

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KayHimm

Sorry about responding to BC’s post but I knew I wouldn’t remember the details if I messaged her!

A member just posted about her concern regarding upcoming surgery. One person assured her she would get a pre-op review which allows time for things to get resolved. But with dental procedures, who reviews all of this?

I would certainly contact your rheumatologist. They might want you to wait until your blood counts are up or you are finished with therapy. Hard to say. I don’t know about that particular procedure but we don’t want you to get an infection, that’s for sure.

Keep us posted. That is important information for lots of people on these powerful medications.

K

Paprika60 in reply to KayHimm

Thank you for your comments. Coco (BC) is very helpful with her vast experience/knowledge on different issues. As you might have guessed from my response to her, I have decided against the implant and my new dentist is happy to go ahead with bridge work. He completely understands my concern. It isn 't the infection that worries me although that would be awful too but it is the metal toxic elements. There have been so many reports on this with all sorts of procedures and yet the medical world still goes ahead with most of the procedures. And they don't necessarily tell you any potential danger...it is up to all of us to search. If it wasn't for medical documentaries on TV and medical journalists reporting the reality behind it, none of us would be wiser. Thank you for your concerns. 🙏🦋

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