Anyone else with UCTD or Lupus have tooth loss? - LUPUS UK

LUPUS UK

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Anyone else with UCTD or Lupus have tooth loss?

I’ve been being tested for Lupus for over a year and still going. They have diagnosed UCTD but are still looking into lupus. Besides everything else, hair loss, rashes, face swelling, Vasculitis, leg and feet cramps, fatigue, aches, pains, stiffness, fever, brain fog.. chronic dry mouth, blacking out and a seizure; I’m losing my teeth! At first it was back teeth. Embarrassing, but somewhat easy to hide (just don’t smile), but the day after my last Rheumatologist appt, I lost a lower front tooth. And, though only a couple of months ago, my teeth are already very misaligned now from the loss of that tooth. Anyone else experience this? So humiliating!!

12 Replies

Hi brooksidecourt

Welcome to the UCTD club, you will find many members of it on here which I'm sure you will find helpful. Glad there also testing you for lupus and keeping an eye on you. That's important with UCTD as it can change over time. Did they start you on treatment at your last Rheumy Appt?.

I'm sorry your losing your teeth, that's awful and not good for your self esteem!. What does your dentist say is the cause of this?. Inflammation can cause gum disease which can lead to tooth loss eventually. Any treatment your on can start to halt this process which you need badly. You say you have a very dry mouth. I do too and use Biotene toothpaste. It's an anti bacterial and has flouride in it but is really good for dry mouth as it replaces our saliva much needed for tooth health. Could help with your tooth loss. It's more expensive but I think worth it. You can buy it in Boots and Lloyds Pharmacies!. Hope that's helpful.

Take care with this heat X

in reply to misty14

Hi Misty, thank you for your reply. I will certainly check out Biotene. I appreciate that helpful hint.

I’ve been seeing doctors and having tests for over 4 1/2 years. It’s been the past 15 months(?) they’ve honed in on Lupus testing. I’ve been to a nutritionist, a doctor of food science, my regular doctor, an endocrinologist, an allergist (18 food allergies. 99% common foods I was eating about everyday. And 5 environmental allergies. I was experiencing anaphylaxis), a dermatologist, and am on my second Rheumatologist. By my fourth visit to my last Rheumatologist and I still hadn’t actually seen a doctor there and sat in her exam room for 1 1/2 hours past my appointment, I decided I needed to switch Rheumatologists.

I haven’t been to a dentist. I’ve lost so many teeth that with the first ones that fell out I went and they said my portion after dental insurance would be about $20,000. So I can’t even imagine how much they would quote me now since i’ve lost so many more. They said I needed a bone graft and a sinus lift, etc. I’m trying to get a stable diagnosis so medical insurance will help pay.

As far as meds, I’m trying not to go on them. For some reason my liver keeps being flagged during blood testing. I don’t drink alcohol (not even socially) nor coffee, or smoke. The past 4 1/2 years I haven’t had any artificial sweeteners, don’t eat fried foods, no fast foods, no prepackaged foods. No dairy at all. I only eat poultry and fish. I eat a LOT of wild caught salmon. I’ve always eaten a lot of avocados. Probably close to 10 years ago I stopped table salt and use only sea salt. I eat a lot of veggies, (a lot!) and use a lot of olive oil. Besides giving up wheat (gluten) I can’t eat gluten free breads because I’m allergic to yeast. I basically only eat what I make fresh, or at a Whole Foods type restaurant. So Idk why my liver has gone bad the past year or so? But I am staying as far away from meds as possible. I don’t think my liver could handle them. I don’t even take Tylenol.

I take a ton of supplements including Turmeric, ginger root, cat’s claw, fish oil, Biotin, liquid vitamin D and E (both sublingual) and quite a few others. I have a protein (plant based) smoothie about everyday with nanogreens (equivalent to 10 servings of green leafy veggies). I’ve put on about 40 pounds the past couple of years and it’s frustrating (hair loss, teeth loss, and weight gain, UGH, why couldn’t it be the opposite!!☹️) You’d think i’d be a tooth pick based on what and how much I eat. I was thin before all these changes a few years ago. And I go to the gym 5-6 times a week (except when my shoulder blade is inflamed like this week).

My regular doctor gave me an Rx for Prednisone in the beginning I told him i’d put it in the medicine cabinet and only use it if I really had to. It’s still there. Last year around November my first Rheumatologist’s assistant gave me a low dose of Prednisone (20mg) and asked me to take it just short term (6 days) to see if it would do anything. So I did. Didn’t do anything. Then last February the dermatologist insisted I try to see if a higher dose would help. So I gave in. He put me on a full 60 mg for a full 7 days, then a sudden drop to 20 mg for another 7. Again, It didn’t do a thing.

I’ve made a few inroads. I think that I don’t hurt as much or as often (or maybe i’m just so use to it being my normal?) I try to use compression bands, soaks in tubs, and a lot of BenGay (😆). My face isn’t swelling up as much or as bad. My rashes aren’t as bad either. What I do get I can now cover with makeup and no one knows. I use to rash and swell so much I looked like i’d been mugged. My neck use to be so bad I looked like someone tried strangling me with ropes, and it would itch so badly I would want to tear my skin off. I admit, when I start seeing my skin flare I now will immediately reach for the Rx cream (triamcinolone?) and use the smallest amount for the shortest term possible, because it causes skin to thin and causes wrinkles. I don’t need to add wrinkles to my list of uglies happening.

It could be more the time of year? I think the last two summers things improved a bit as well. Then when the holidays come, things start rashing and swelling again, and by January i’m down all day for months. So I don’t know if i’m getting on top of this or if it’s part of a pattern for me?

This new Rheumatologist wanted to put me on an anti malaria med my last visit, but I told her i’d hold off for now. I just find that one long term med means more meds for the side effects of that first medication. Then those secondary medications cause side effects and then you need meds for those. Pretty soon you’re on20 different things but feeling no relief. My mom went through that and finally told them to take her off everything. They stopped her meds at 4pm, she went to bed that night and never woke up. And she was miserable for years and years before that! If there was some magic pill that helped me live a more reliable life without any ill effects whatsoever, i’d be more than happy to take it. Otherwise I am avoiding them like the plague. I’m not judging anyone who takes meds. Not at all!! But for me, something inside tells me to stay away as long as I can.So hopefully, as far as teeth, I can get a true diagnosis soon and the Rheumatologist will know of a great dentist use to working with AI patients.

Has anyone tried acupuncture? I’m going to talk to the Rheumatologist about it when I see her in a couple of weeks. I also think (and I know this sounds weird and hippy-ish) I’m going to go to Utah in October and see a Foot Zoner. Has anyone done that? This particular one has Lupus herself, but travels constantly doing foot zoning sessions for people, so she must have some luck keeping her flares down?

Thank you Misty, and best of luck to you!! 🙏

in reply to misty14

I found and bought the Biotene. Thank you so much for the suggestion.

Thank you Pippa! The first teeth I lost was before I realized I had an AI, so I wasn’t on anything. Through the years I kept thinking I was ‘going through’ different things and didn’t realize they were all connected until 4 1/2 years ago when I woke up thinking I had the flu really bad. Hurt EVERYWHERE, fever, and couldn’t stay awake at all. After a few weeks of this, I started getting suspicious that it wasn’t the flu. Took me about 4 1/2 months before I saw a doctor. I was too out of it to leave the house at all, plus, when I was able to, I would talk to people and check things out trying to figure out what was going on.

I’ve been avoiding meds. I did get talked into prednisone twice but neither time did it help. At this point the dr wants to try anti malaria meds. I said no thank you. At least not now/yet. I know the next step after that seems to be chemotherapy? Kill everything else off while fighting the lupus? Idk if i’m ready for that. I’d love a more reliable life; make plans and know i’d wake up feeling good all day (when was the last time that happened?), but the side effects aren’t something I want to deal with. For some reason, as clean as i’m eating (and I eat super clean!) besides weight gain (?) I also now have cirrhosis of the liver. So I think meds would do me in. Thank you, and my best to you Pippa🙏.

Hi Sorry to hear your so poorly despite your healthy living. A number of rhought arose reading your symptoms...

I have both SCLE & Sjogrens & I am losing teeth combined with lists of other issues.

You don't mentioned if you are UV sensitive which can trigger symptoms you described ?

Sjogrens often accompanies lupus which causes dry mouth & issues with teeth, take a look at info about this & see if it fits some of your symptoms...

I am on hydroxy & mycophenolate & various other meds for specific symptoms & despite the number of meds I have been fortunate lately that it's helping me live day to day.

I went for the meds to curb my symptoms & constantly check my eating habits when I feel more unwell or if I have had to much UV or pushed myself to much....

Medications are helping me have some quality of life. I hope you find some path through all this...

I hoping to tackle more issues with teeth as I think more can be done, recently diagnosed with issues with my jaw an osteoarthritic condition...not fun lots of issues there... Wishing you better days ML

Ps Alternatives are fine, certainly helpful... Good luck in Utah...sounds interesting....ml

in reply to maggielee

MaggieLee, thank you so much.

Yes, I seem to be sun sensitive. UGH! I feel as if I ‘bravely’ gave given up all my favorite foods and now for this Southern California girl to have to give up the sun is the last and final straw!! (Ok, I still have my husband and kids, grand kids, etc. I’ll take them over the sun any day, but come on.) My eyes have been sun sensitive for a long time, I just didn’t realize it wasn’t what everyone else felt. But for the last several years, being in the sun causes problems. I was only briefly in the morning sun yesterday to water pots and bring in trash cans and my face got a slight rash from it. But a month ago I was on a vacation with my entire family; husband of course, adult kids, daughter-in-laws and grandkids. We went to Big Bear Lake for 4 or 5 days. Every afternoon I spent napping for 2-3 hours. But one day we went to spend at the lake. Everyone else was paddle boarding, kayaking, swimming and having a great time. I sat under shade fully dressed. Yet, after two hours I was done. I felt nauseated, and the aches of arthritis flared up. So I went back to our AirBnB while they stayed and had fun. Just two hours, and sitting under shade, made be feel like I suddenly had the flu. But, here it is a month later and the leg and arm that seemed to have accidentally gotten sun are still reddish as if slightly sun burned?

I love being outside soooo much. But, ugh!! Last December I was outside in the early morning helping set up an outdoor Nativity at church for the public. One of my friends said ‘we need to get you out of the sun, your face is swelling’. December? Early morning? Come on! Yet, I read posts in here that make me feel so badly for complaining. So many people going through so much worse.

But yes, I would say i’m sun sensitive. Thanks MaggieLee🙏

maggielee profile image
maggielee in reply to

I agree about giving up 🌞 sun, its the pits. Glad your aware of your sensitivity..it can trigger flares, so like food, another big adjustment & wearing lots of sun block clothes...

Keep us up-to-date....

ML

in reply to maggielee

You’re so kind and supportive. Thank you🙏 and all my best to you!

I’ve not lost teeth YET!!!!! But I reckon it won’t be long unless someone helps me.

My dentist told me to use one of those interdermal toothbrushes to clean under the gums. All I’ve had since I started is excessive bleeding and pain 🙁

Makes me think my gums are too inflamed or dry for this type of brushing.

Some of my gums have become so exposed the pain is driving me up the wall and the fear of loosing teeth is causing nightmares .

I’ve no idea what to do anymore

X

Oh wow, i’m so sorry Lisa Lou. The first teeth I lost were all in the back. I could somewhat hide the loss from others, but hated picture taking because, inevitably, someone would try to force me to smile bigger and it was awkward. Now i’m up to 10 or 11 gone, and I can tell a couple of more are soon to follow, the latest is a lower front tooth. It’s extremely embarrassing. I keep thinking ‘better me than one of my children’ and try to satisfy myself with that. I just wish I could get the Rheumatologist to give a definitive diagnosis so she could refer me to a dental specialist and hopeful my medical insurance will help defray the cost? I realize that testing goes on and on first.

I started up months ago with pain in my right jaw joint, so hopefully a dentist that understands all of this.

Thank you.

Lisalou19 profile image
Lisalou19 in reply to

I think it is important that a specialist realises that tooth loss could be caused by autoimmune illness, or gum disease.

My dentist is at a loss with me now he says he doesn’t know what to do 🙄 it’s frustrating and upsetting.

I’m sure if it can be proven that the loss is caused by illness you can have dentures or other treatment to replace your teeth as it is not for cosmetic reason.

X

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