Sjogrens Syndrome and bad breath. Help!

Posted , 30 users are following.

I found out I had sjogrens last summer. One night, about two years ago a partner asked if I'd brushed my teeth. I told him, "Yes. Does my breath stink or something?" I had never had problems before and was surprised. It was one of many indicators (aside from swollen feet, feeling like needles were poking in my eyes and a tiredness, among other things). It was hell. 

It still is. 

Overnight, I went from having a fairly normal life to feeling like my face is plastic, drinking an ocean of water I can't feel on my tongue, dry nostrils, swollen feet, swollen eyes LOOKING older than I am. which had been a symptom my entire life, and the cherry on top? Bad breath, causing embarrassing moments at work, depression, and bouts of tears and social avoidances. 

Ive tried every over-the-counter product you can name. All of the Biotene products, sugar free gum, Chlorophyll pills, Odorol pills, tea, alcohol-free mouthwash, Therabreath, I can go on forever. 

Nothing is working. 

Live gotten to the point where I even take a toothbrush and mouthwash to work. Doesn't work. 

Im at my wit's end and find myself explaining sjogrens (which people just look at me like I'm crazy and are not receptive enough to research this illness to have empathy). I'm have SO many embarrassing moments, since that night and I have no idea what to do about it. It's disrupting my life as a teacher.

i avoid meeting s with faculty and other social events. 

I have an interview coming up on the 22nd and I'm tempted to cancel it; because, I don't want my breath to turn people off. 

This is is SO new for me. I call it a social experiment. Some people still treat me the same. Others avoid me, even grip their noses when they see me. 

I would like ANY advice you have for this. 

Ive seen a podiatrist, dentist, ENT, gastroenterologist, you name it and I'm at my wit's end. 

I would appreciate your advice. 

Thank you-

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  • Posted

    Hi Oly,

    Try Xylimelts mint flavour these work well for me you can get them from the mouth ulcer shop or Amazon.

    Regards,

    Mandy

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    • Posted

      I just ordered it from amazon. I’ll let you know how it works. I’ve decided to go to the interview, regardless. If I cancel this one, I’ll be canceling for the rest of my life and I have to accept that this is where I am...now. 
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    • Posted

      Mandy. Just found my Amazon box at my door. The  Xylimelts have arrived. They aren’t mint-flavored though. They’re small and have an interesting texture. I’m trying them

      Now and particularly when I go to work tomorrow.  I’ll keep everyone posted on the job interview on Thursday.  

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    • Posted

      Thank-you so much Mandy.  I ordered the mint flavoured from Amazon and they do indeed help. Its so important to find solutions which help with symptoms and can help us forget for a moment how difficult these auto-immune disease are.   I'm very grateful for this forum and all the excellent advice we get from you and others who have already researched and share your remedies!!!

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  • Posted

    Has your SS doctor suggested Salagen (Pilocarpine Hydrochloride)? 
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    • Posted

      Which med is that? There was one he prescribed that’s normally for cancer patients undergoing chemo that made me extremely sick. It induced saliva but at a rate where saliva was dripping constantly. I stopped taking it. If you have more info please send along. 
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    • Posted

      Yes that's possibly the one. You probably need to check if it was Salagan/Pilocarpine.

      It sounds like it helped in the saliva production department. Was it the type of drug you could take at a lesser dose? Sometimes a tablet can be broken in half or even quarters and some of the nasty side effects can be reduced yet still be effective for the original purpose.

      Megan

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    • Posted

      Okay. I didn’t think of that. I can call his office to see if that’s what he gave me and perhaps try again. This has been such a frustrating journey and your advice dearly helps. Thank you. 
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    • Posted

      I was thinking that you have worked through the various pertinent specialties.

      - Dentist for any tooth decay etc.

      - ENT for sinus infections etc.

      - Gastroenterologist for abnormal digestive issues.

      Do you think they each eliminated everything possible in their arsenal? Did they each do comprhensive testing?

      Have you researched what physiological conditions cause halitosis? I must admit I haven't at this point so I'm not much help there. I'm not sure if there is a wide range of conditions or a narrow band which cause the problem. Certainly lack of saliva can be one of them.

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    • Posted

      You know. I have a constant sinus/nasal drip in the back of my throat. I researched tonsil stones and that may be the culprit. It doesn’t help that many doctors don’t know about Sjogren’s. But I’m going to the ENT to have him check for tonsil stones to see if that’s causing the problem. 
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    • Posted

      We'll try again: I know a lot about halitosis. Talking professions, e.g., teachers, sales folk, singers, actors and book narrators, to name a few, suffer most. Talk talk talk = dry dry dry = bad breath.

      Yes, post nasal drip would be the sole cause. Ditto sinus infections and or tonsillitis.

      Cut back on your med or try a single 30mg dose of mine, if only I could type that name here. I know a lot about this because I used to do ad voiceovers & narrated talking books for 11 years.

      Gum, breath drops and the melts all help. Do the interview.

      Yes abscessed teeth cause it and you can have one without realizing it.

      Coffee, tea and decaf versions aggravate because they are diuretic.

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    • Posted

      Post nasal drip could ,,, it should've said.

      Sip & drink water or water with a little bit of honey, juice or sports drink all day. Chilling the water and or adding those things make the liquid more bioavailable to mucus membrane. Dry mucus membrane is one of the main culprits. Tisanes or herbal teas as we Americans call them are not all good: plain mint is a little astringent. If you add something the ph affect changes and it's fine.

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    • Posted

      WOw. Just in the first 48 hours of posting I’ve learned more from you all than from any doctor I’ve seen. YES. I have post nasal drip. I slack off on the meds because they make my mouth drier.  Should I get tonsils removed or ask ENT to remove tonsil stones (if I have them) or keep taking medication. The meds are t helping bad breath. I’m thinking it’s the tonsils causing the odor. 

      Your post is a GIFT to me. I’ve always wanted to read audio books and am quite amazed you get to do that. Please let me know what you think about the question above and if there’s anything that helped you along the way. Ps: teaching (talk, talk, talk) 

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    • Posted

      Thank you Oly, you're very kind.

      If tonsils aren't causing problems I wouldn't have them removed. I'd never heard of tonsil stones til you posted that. Abscessed teeth, The Drip and sinus infections are much more common. Yes, many antihistamines aggravate or cause dryness, especially older OTC meds. I use a med with a brand name c______x and it is far less drying.

      I had to stop narrating some time ago due to increasing non-SS lung problems plus my voice becoming more gravelly due to lung issues + SS dryness. I enjoyed it and read some great non-fiction and magazines for which i would never have found the time otherwise. But they're only available through the Library of Congress system and state libraries. I kept my marked up copies of the books which most moved me.

      I drink 40-75 oz of water daily, plus some other liquids most days. Yes, It's a lot of trips to the toilet but along with my moisture med which brand name begins with e____c and gum or breath mints, It's what saves my breath.

      You will adapt, it's just another challenge. Versus the man who was in my life for 22 years whom I could not kiss on the mouth, for 22 years, because tooth problems made his breath so bad and my sense of smell is unbelievably & painfully acute. He refused to go to the dentist. You are tackling your problem.

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    • Posted

      Thank you. 

      I would love to know the names of the meds you take. Can you send a private message? I’m taking any and all advice, as I am so grateful for it. 

      What is the process for becoming a narrator? I’d love to consider that once I’m over this mountain. 

      To not have kissed for 22 years...you showed empathy, perhaps more than anyone (perhaps, even he) could’ve imagined through his condition. 

      That speaks volumes about who you innately are. Everyone needs such an understanding person. 

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