Dental pain : LVV diagnosis June 19 , now on... - Vasculitis UK

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Dental pain

Devoid
Devoid
17 Replies

LVV diagnosis June 19 , now on tocilizumab weekly, methotrexate weekly and pred down to 16 mg daily. Started recently with sensitive teeth, particularly to cold drink, food or even breathing in cold air . Using toothpaste for sensitive teeth, some improvement but it seems to vary during the day .Last couple of days teeth on left side? Nerve pain, sore ,no redness, again not the same through out the day. Seems to move from one tooth to another. Seeing dentist next Monday but just wondering if anyone else has experienced this or any tips. Just getting more mobile and now I want to leave my head off!!!

17 Replies
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michichgo

Hi Devoid.

I've struggled with random, yet sometimes significant, tooth sensitivity for a few years now. I'm currently taking mycophenolate sodium as an immunosuppressant but was on Rituxan for about 3 years, for MPA. I don't know if the meds or condition cause it or not.

The pain moves from one tooth to another, sometimes whole sections of my mouth. This past week, the pain radiated into my jaw and ear. I didn't call my dentist and, sure enough, the pain subsided, though I had to eat and drink room-temperature food and drink.

I have no recommendations other than rubbing sensitive toothpaste on the fronts and backs of the troublesome teeth. That, and steer-clear of overly cold and hot foods and beverages.

Hopefully your dentist can offer additional recommendations.

Wishing you good health,

Michele

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Devoid
Devoid
in reply to michichgo

Thanks so much for that advice, have now googled it and apparently it does happen with vasculitis, it was the moving about from one tooth to another that freaked me out!!!

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michichgo

My teeth have been on the decline and my dental bills have been higher than I'd like, that's for sure! To think I was told it's "just your kidneys", some 6 years ago. This systemic disease stuff is not for amateurs.

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Devoid
Devoid
in reply to michichgo

That’s the conclusion I have come to!! Having had several months with my mobility getting worse, now getting about again, then the teeth have become a problem. I do think it helps sharing these issues

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michichgo
michichgo
in reply to Devoid

I know, right? Without connecting to others, I felt so alone and as though my doctors didn't believe me. This forum has been incredibly helpful and has eased the anxiety, I've felt for so long

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GPASufferer

Hi, sorry to hear you are suffering. Hope things improve for you soon. YES! I have tooth pain frequently. My rheumatologist prescribed lidocaine mouth rinse. It’s a little disgusting and feels weird, but it does numb the gums. BTW I have Wegeners (GPA). My problem right now is joint pain. Good luck and happy holidays!

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Devoid
Devoid
in reply to GPASufferer

THANKYOU for your response, it does seem if it’s not one pain it’s another!! Hope you enjoy the holiday, I presume you are in the states, or you are celebrating Christmas very early 😊

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GPASufferer
GPASufferer
in reply to Devoid

Ha! Yes, America The Beautiful. 😀

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Paprika60

Yes, this is a common amongst vasculitis sufferers it seems. I now use a mixture of children's toothpaste as a very thin layer of my inner lining )of the mouth peels off if I use adult toothpaste! My dentist has referred me to a specific dental hospital for this and I am waiting to get an appointment from them. It could be part of Sjogren which accompanies auto-immune condition. One more thing to worry about! Arrrgh!

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Devoid
Devoid
in reply to Paprika60

Thanks so much, I was really worried about this new issue but feel reassured that it is part of the vasculitis, seeing the dentist on Monday so hopefully they will have some idea on reducing the pain

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Paprika60

I am glad if I can be of any help at all. I will keep your post and get back to you if I find out anything after my appointment with the dental specialist. It may take months. Please don't expect your dentist to come up with any solution. It seems even the specialist vasculitis doctors can do limited things...like suppressing immune system which opens up the another issues. The pain comes and goes...part of our condition and we have to learn to deal with it. I wouldn't take pills for it as it will create another issue in the long run. Being positive and strong helps more I think.

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Devoid
Devoid
in reply to Paprika60

From early on following diagnosis I decided that the pain medication wasn’t effective, so I stopped taking them on a regular basis and occasionally take paracetamol, mainly I use breathing techniques which I find much more beneficial, but this was more difficult with the dental pain as breathing in cool air seemed to set it off , definitely not so bad today.Or like everything else I’m just getting used to it!!

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Paprika60
Paprika60
in reply to Devoid

That's very good to hear. I am very similar. I use breathing to stay calm including doing all sorts of coping methods such as using essential oil to massage gently to sooth painful areas and also calming. Hot water bottle with isolated aches and all sorts of natural products. Have you tried holding very warm (not enough to burn obviously) in your mouth? You might also massage the facial skin area of your gum gently. Hope you feel better soon. I always say to myself that it is a temporary set back.

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Devoid
Devoid
in reply to Paprika60

Seen the dentist who was very thorough, X-ray showed nothing, she has referred me to a specialist as she said they wouldn’t even do a scale and polish with all the medication I’m on . She gave me 2 samples of other sensitive toothpaste and also a script for another that you leave on the teeth for a short time. Very reassuring appointment and the examination hasn’t triggered the pain so hopefully it’s starting to settle

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Canygirl61

I was having tooth pain. It became unbearable to chew and for a period of time, was sensitive to hot and cold. I saw my dentist and she could not find anything. She referred me to an endodontist, who also found nothing. Then, miraculously, all the pain subsided. The endodontist said sometimes they can’t find anything, but then pain resurfaces and the problem is discovered. He told me if I experienced pain again, to come back. Sure enough, a few months later, I was having sensitivity in the same tooth. It was so painful, I had difficulty eating. So, I went back to the endodontist and again, nothing. I was sent for an expensive 3D X-ray and still nothing. Again, the pain resolved. I’ve since learned that this happens in people with vasculitis. I have Wegeners (GPA). 😕

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Devoid
Devoid
in reply to Canygirl61

Yes this does seem to be a vasculitis thing ! One I could do without,as just starting to feel better after 7 months of feeling absolutely awful. The pain as eased off a little now after a week of being really bad , just the sensitivity remains, seeing the dentist this afternoon so will see then

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Nap1

Yes. I Always have sensitivity with my teeth. I’ve been on prednisone for nine years now and teeth have been sensitive all along.

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