Sjogrens Syndrome and bad breath. Help!

Allergies, blood and immune system
1

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-

2

Hi Oly,

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

Regards,

Mandy

3

Has your SS doctor suggested Salagen (Pilocarpine Hydrochloride)? 

4

THank you, Mandy. I will try that. 

5

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. 

6

Hi Oly

I'm having a hard time getting a message through so I'll be a bit short:

1. Any profession where folk talk all day --teachers or like me when I narrated Talking Books -- is a halitosis profession. Car salesmen also suffer, I guess all sales pros, docs, etc.

2. Aging worsens this for everyone, not just SS

3. Sips of water all day and a big swig right before you're near someone help

4. Gum, breath mints and Xylimelts are your friends. Spry also uses xylitol to sweeten (best for teeth) & they make many flavors of toothpaste, gum and mints. Gum or xylimelt, tuck it in an outer upper corner spot in the jaw. Chew half piece of gum to ease jaw stress. Practice w/this before that interview.

5. Evoxac/cevimeline: in the States no one gets more than 30 mg 3xday, versus vast dosages that seem to be given in the UK. Ask your doc for this med OR for reduced dosage of whatever you were given. I mostly don't do the 3d dosage: 1 in the a.m. and then 1 before bed for the health of my mouth/teeth. But when I 1st went on it, I only needed 1 30mg daily. As my mouth got dryer over 18 years we added first 1 more then 2. When friends were here from Canada for 2 weeks, several times I took a 3d capsule because we caught up on 4 years apart, lots of talking so when my mouth stuck to my teeth I'd take a mid afternoon dose.

6. Go on your interview!

7. Eat parsley, tho maybe not right before the interview, lol. The chlorophyll helps. Possibly still works if you make parsley tea or tissue, I guess. Worth trying.

8. Sometimes water dries our mouth further. Filtering it and/or chilling it can help, or adding a tiny amount of juice or honey helps by making the moisture more bioavailable to mucus membrane.

8. Coffee and (real) tea dry out your mouth. Period. Professional narrators are warned to avoid the stuff before & during narration. Decaf has same effect.

9. Work out a code word/phrase with your partner & closest friend, maybe "Halley's comet. "

10. Post nasal drip & sinus/tonsil infections = the worst breath on earth regardless of age, race, religion, ethnicity and sexual preferences. Get those things checked because they might be compounding the SS.

11. My dad had halitosis so I've always assumed I'd have it. I own gum/breath mint factories, or I should with all that I've consumed You will adapt and become more comfortable pretty quickly.

7

A few things. I am sure your breath is somewhat noticeable but not as bad as you think. Don’t let it take over your  life. Are you sure you don’t have a dental infection. Sometimes there is bacteria in the gum that a regular dentist can’t see on X-rays. Maybe you need a periodontist- also known as a gum dentist. 

For smell relief- menthol cough drops seem to help. They may have sugar but promote saliva flow and help with odor. I also sometimes do oil pulling with coconut oil which seems to temporarily help.  Go to your meeting. I promise you- your breath is not as horrid as you think. 

8

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

9

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. 

10

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. 

11

Just a question regarding when you had saliva 'dripping constantly'. Did it help your perceived breath problems?

12

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.

13

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. 

14

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.

15

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.

16

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) 

17

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.

18

I’m relatively new to this group but I read 90% of the posts and replies and I just wanted to thank you for your wonderful description of your face feeling like plastic. It sums up perfectly how my own face feels and my lips even more so. 

I’m also very aware of how bad my breath is and like you, have tried everything available but nothing has worked for me either. I have seen some new suggestions in the replies though and am going to begin working my way through them. So once again, thank you for your post in its entirety and good luck with dealing with the debilitating and depressing condition that is SS.

Kind regards,

Wendy

19

Hi Wendy:

When did your breath issues start? I NEVER had them before Sjogren’s and at 42-43, they occurred overnight. It is very deliberating, indeed. 

I’m glad you’re here. I’ve fekt so isolated with no one who truly understands. If it isn’t autoimmune diseases they know, they just don’t do the research to show empathy to your condition and blow it off. 

I read somewhere about the notion of “looking sick.” Sjogren’s isnt bisible, unless your face or hands or feet swell. Otherwise, people misconstrue your not “looking sick” as your being a candidate for saviorship or attention. 

We both know that isn’t the case. 

The interview I’m going to on the 22nd (Thursday) is one that is rare. I almost canceled it and decided against it, after talking to a friend. Am I nervous? In a way. Am I worried the SS will kick into overdrive (bad breath symptoms from dry mouth) before I get there? Yes. But I’ll be running for the rest of my life if I didn’t wear a helmet of Teflon. I have to go. 

Please share your experiences as well. I researched and saw xerostamia as the condition we have. I’m also going to the ENzt this week to see if tonsil stones are contributing to the bad breath. I can’t live like this forever. 

But I feel blessed that the ostracism of it has caused me to have even more empathy for people and their plight to persevere through a series of issues. 

Thank you for your post,

Oly. 

20

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.