lupusinflight

Hi Joanne, sorry you're in the horrors, but I'm right there with you. This has basically been the story of my life this year, and I'm afraid for me there was no way around it - the tooth had to be extracted. I say'had to be' - but really, we have to make that decision, no one else can. I'm on Ritux every four months and pred 7mg so basically the same treatment as you - I also have prophylactic antibiotics and IVIg every three weeks, but according to the immunologist, having an infected tooth/dental problems is an area that can remain largely untouched by medical aid. Plenty more to say and I'm totally here to metaphorically hold your hand through this - message me privately if you like - or we can chat via email xx Shaista

lupusinflight in reply to lupusinflight

But in case you don't get a chance to see this before tomorrow - good luck! As for increasing prednisone- I personally didn't because I don't get on too well with increased steroids - but if you have experienced relief from higher steroids then it might be a good idea. Painkillers and a loving, caring person close at hand will be more appropriate!

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joannebond360 in reply to lupusinflight

Thank you so much for your reply! It really is miserable 😩

It's making me feel poorly too and exhausted from the pain.

Will be calling the dentist first thing. Got a day left of anti biotics and they haven't done a thing!

So sorry to hear that you have gone through the same thing, did having the tooth out sort the infection out for you?

Jo

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lupusinflight in reply to joannebond360

The simple answer is yes - no more infection there, no pain, the skin has healed itself and although there's a gap, luckily it's at the back so no one is any the wiser. Unfortunately for me that's not the end of my story - I have loads of fillings and crowns and it's all total hell but that particular saga is completely resolved! So if your problem is very localised to this one tooth, you're actually in a good position to have it all sorted out and it will soon become a memory. Not a nice one, but done with.

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joannebond360 in reply to lupusinflight

So glad it healed up for you!

I have only ever had problems with this one tooth which had a hair line crack in and the dentist said If it's not bothering you leave it and he sealed it with something to stop the sensitivity. But it has obviously let some bacteria in. Got no other fillings in any other teeth just this one.

Gosh it sounds like a nightmare, hope you get the others sorted.

I am at a private dentist and it's already cost a fortune 😩 Definitely getting an insurance out now!

Jo

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Barnclown

Hello Joanne...am so glad Shaista replied....i have ultra mega empathy for anyone going through this ...I'll never forget my nightmare 9 months of this when upper jaw molar root canal failed after 20 years of grumbling symptoms in the roof of my mouth ignored by my dentist. Abscess occurred with sinusitis...then we discovered the bad root had caused osteomyletis in the jaw. That was 2011 during the same period when my hero rheumatologist had just recognised my lupus & started my treatment plan with hydroxy ...so, unlike you both, I had no doses of steroids & myco to adjust...

After multiple courses of antibiotics failed to curb the infection & abscess, I did indeed have the molar extracted by a private oral surgeon...he showed me the b****y mess as he removed it 😱. He proceeded to go through months of all the various stages of placing an implant while my rheumatologist was figuring my immune dysfunction & connective tissue disorder out + starting me on hydroxy. I was very lucky: despite the osteomyelitis, the implant survived & established well. Meanwhile hydroxy & I got along fine...even during the 5 months I spent on daily oral high dose flucloxacillin for the osteomyelitis & sinusitis

So, do be cautious: I'd definitely go for another extraction pronto....& implant if necessary.

Thanks to your discussion with Shaista, I more of a sense re whether I'd need to stop myco & pred were something like this to start up again...at least now that immunology has me on coamoxiclav daily indefinitely, I'll have this protection re further infection during any necessary extractions & implantations 😏

Please let us know how you get on

🍀🍀🍀🍀 coco

joannebond360 in reply to Barnclown

Thankyounfor your reply barnclown.

Wow you have gone through it too. Really awful! I can't take another day of it let alone 9 months!

Will let you know what happens.

Jo

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Barnclown in reply to joannebond360

The sad thing is: the root canal on this upper molar failed 20 years before the painful simmering pocket of jawbone infection (osteomyelitis) it caused was FINALLY recognised. Had my lupus been known earlier, possibly medics would've been alert enough to prevent the osteomyelitis taking hold in my jawbone...but, equally, because I wasn't on immunosuppressant meds maybe the infection moved more slowly...maxillo facial clinic thought I was lucky to avoid having my face rebuilt😨

I don't mean to lecture or nag 😏but after that nightmare experience, I'd totally get any tooth involved in a complex persistent pattern infection extracted pronto

🍀🍀🍀🍀

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littleeffie

Simply yes.

Had 2 back teeth pulled due to abcesses,not a lot to see before but the mess underneath was scary, plus all wisdom teeth (explains alot😉)as dentist told nothing would clear the infection which could damage jaw.

I didn't realise just how awful they were making me feel at the time such as eye discomfort,bad taste,cheek and nose ache,other than the pain, but a couple of weeks later I was so much better.

Hope you get it resolved soon and with as few meds probs as poss.

maggielee

Hi Joanne sorry to hear about your teeth pain, like littleeffie I have been battling to hang on to my teeth, first my back right was pulled quite loose, I was sad about that, then I had a filling on the otherside and this triggered lots of mouths pain, they pulled my lower back tooth next and still i suffered and they wanted to pull another one above and I asked for antibiotics which I never take & went for a second opinion (which cost me)... I am already paying yearly. They too wanted to pull my teeth for more money. Fortunately, the antibiotics kicked in and I was able to stop the pulling of any more teeth. I went to the dental hygienist spent a hour with her getting more lectures on teeth cleaning & a good clean, no rush job and teeth and gums are better ...see her every three month to keep it in check... It is so sad to lose teeth. I was feeling quite poorly this last time glad it's under control.... Both pulled teeth areas healed OK and OK to eat and no pain. Electric toothbrush a good one, regular visits to the dentist and hopefully you won't have a repeat experience... Nor I. Seeing hygienist in December she will let me know if she approves and i pass cleansing teeth inspection, just like school but worse....good luck for tomorrow. ML

joannebond360

Thank you so much everyone, made me feel so much better.

Pain has been dreadful and kept me up all night so I hope they can pull it out today!

Will let you know what happens.

Jo xx

joannebond360

Just had the tooth out, part of the root snapped which he said normally they would just leave but because of my problems with it he's referred me to hospital to have it removed.

Jo

Barnclown in reply to joannebond360

YAY ...this is one awful ordeal...I think you're being v brave...take care...keep us posted 👍👍👍👍👏👏👏👏🍀🍀🍀🍀

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Cann

I had this, too, with all my root canals and crowns - all out now, thank goodness, and I am recovering from the last two extractions in September. I wish I never went there in the first place and just had them out because decay and infection in the roots can really cause problems.

Good luck and go with what your gut tells you.

It may be hard to go through having teeth out and recovering, but better in the end.

Just look after yourself after the extraction.

I had 2 out last time and only ever had one, which was bad enough, but having 2 I had bad swelling and pain.

I used natural means for the pain - prayer and meditation, breathing, etc., although I did resort to holding a packet of Panadol in my hand all night after the last 2. I am very sensitive and can get the energies of substances by holding them even homeopathic.

I am still glad I did it, though.

The thought of having to go through it later made me get on with it.

All the best.X

joannebond360 in reply to Cann

The pain is like nothing else I have experienced! Well apart from child birth 🙈 Actually made me throw up.

I'm glad you have managed to get yours sorted out.

I feel worn out and very tearful so going to rest today.

Thank you everyone for your replies, really has helped and bought me comfort.

Jo

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lupusinflight

Thinking of you Jo xx It was really grisly, wasn't it? I'm so sorry. I didn't know whether to tell you how awful it was or not - I definitely had tears too. And felt very fragile. Really hope you have someone lovely to take care of you or just be lovely to yourself. I didn't realise you were going to have it out immediately - or I would have mentioned that I had it done in hospital too because my dentist was worried she wouldn't have the strength to extract it without something breaking. But I'm glad you've been referred there anyway so all will be well. Take care xx

joannebond360 in reply to lupusinflight

Thank you lupusinflight.

Was an absolute nightmare. Never want to go through that again!

Finally stated to heal. Just got to wait and see what the hospital says about the remaining bit. My dentist said that it can work its way out by itself which sounds bizarre, will just appear out the gap or something! That would save them having to poke around in there again.

Sorry to hear that you have been through it too, absolutely awful.

Jo x

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Roanna in reply to joannebond360

Joannebond 360, I've been following your thread and feel for you. I assisted dentists doing those lovely extractions and root canals for 20 years and if you are in good hands there aren't many failures. Of course home care is very important though. We have left many roots broken in mouths and usually they hang in there pretty good. I've seen a few cases of older people have one surface under a denture and they think they have a tooth growing back but usually it just surfaces like a pimple and comes out. I hope this resolves your pain issues. If the pain does continue it may not be tooth related so be cautious. I'm thinking they may leave the root in there if it is close to the sinuses but again you sound like your in the right hands. Remember take it easy and follow their directions with recovery, rest is best.

Take care.

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joannebond360 in reply to Roanna

Thank you so much for your reply Roanna.

It's all healing up nicely and no more pain. The dentist said that it could work its way out, I keep checking but no sign of it yet. I'm hoping they will just leave it. Would hate for it to have to heal all over again! Still waiting for the hospital appointment to come through.

Just getting used to the gap 😢 Can't see it when I open my mouth and smile which is a good thing, just conscious of it.

Jo

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Roanna in reply to joannebond360

Glad your doing better Jo. If it was going to surface it prob would have done it by now like a piece of food otherwise they have to use a pic to flip it out so your probably safe till the appointment. Glad you can't see it when you smile, that would be hard with a gap showing. I would be continually covering my mouth if it were me. Take care.

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Pamlupuszebra

I have Lupus and Von Willebrand Disease. My teeth started to rot as a child and my teens were horrific with teeth abscessing all the time. I have an inherited Ehlers-Danlos problem from my father who had RA and Crohn's. I am negative to ra but I have psoriasis PsA and colitis from my mother who had colitis. Our first baby was a cot death in 1974. We have 3 sons and sadly I was lied to about an Amniocentesis as he too will have Lupus. I have told him I have Lupus. In my case my new Consultant sadly doesn't understand how complex I am. So I now have a referral back to the Eastman who deal with Ehlers Danlos. I have had Raynaulds for years hyperhydrosis for decades and my mouth is full of dead root canal as my Dentist has left them as with all types of Ehlers Danlos I have pEDS now type 13! Teeth migrate very quickly. In my case as I don't have heart problems our baby Robin who was a classic cot death almost certainly had bradycardia. I hope this helps to understand why teeth disintegrate in Lupus. I am negative to Sjögren's, APS,ME, MS, MG.