Awful taste in mouth - is this a Sjogren's thing?

[CarolineC57]

Hello - I'm new here! I'm not diagnosed with Sjogren's though I'm fairly sure I have it. I've had symptoms for around 15 years, and I have a family history of RA (with hindsight, I think my mum had Sjogren's too, not just RA, as she had a lot of the dryness symptoms). I've got all the usual symptoms along with severe joint pain and inflammation: dry eyes, dry skin prone to cracking and bleeding, intimate dryness, constantly clogged up sinuses/dry nostrils, chronic constipation, etc. The only thing I haven't had until recently is a particularly dry mouth. My rheumatoid factor/ANA is negative so I can't get a diagnosis. I was tested for Sjogren's by a rheumatologist around 10 years ago, but because the lip biopsy was negative I was simply discharged without diagnosis and told it wasn't Sjogren's. So, of course, I've had no treatment for it at all. More recently, my mouth does seem to be becoming drier than it was. Certainly my throat is dry and I have difficulty swallowing sometimes, though I still appear to have saliva in my mouth but I think there's probably less of it.

Anyway, I've got an appointment coming up with a rheumatologist next month - I managed to persuade my GP to refer me back for testing again. I also have a particularly weird symptom which has started in the last few years and is currently driving me mad and making me feel dreadful, but I don't know if this is a possible Sjogren's symptom . So that's why I'm posting here today - to see if anyone else gets this and what you've done about it. It's very embarrassing. I have the most disgusting taste in my mouth permanently! If you can imagine having decaying food stuck at the back of your throat, that's what it tastes like. I originally thought (after doing some googling) that it was tonsil stones as I have had these for many years, but neither my GP nor dentist can see anything wrong with my tonsils, and I've had a throat expert look down my throat with a camera and he can't see tonsil stones either. So, that's my question here today - is there anyone else who's had this kind of disgusting taste in their mouths? Is it a Sjogren's thing? And what have you been able to do about it? Oh, just to add, though it's with me 24/7 the worst time is when I wake up in the mornings. I seem to have a mouthful of the stuff at that point and I have to rush to the bathroom to spit it out. It comes out a kind of yellowy-brown colour. It's absolutely disgusting!

Sorry this is such a long post. I hope someone can help with this and maybe say, yes, it is a Sjogren's thing. My GP has drawn a blank though he's been trying his best, and just doesn't know what to do with me.

[gemim]

Hello Caroline,

Sorry you are having to deal with this very unpleasant symptom 24/7. I don’t have this bad taste all the time but I do have a pouch at the back of my throat - seems to be called Zenger’s diverticulum. Mine was discovered through a Barium swallow test because I was having swallowing difficulties. On reading about it, as the pouch gets bigger food gets trapped there and causes a very bad taste in the mouth. I know you already have a throat specialist look at your throat but I wonder if you were referred for a Barium swallow test if this might show up?? I’m still waiting to see ENT as the Barium swallow was organised by gastroenterologist and as the pouch is in my throat it is out of their remit! I am also wondering if there is a connection between this and Sjogren’s- haven’t been able to find anything yet.

Trust you have a helpful consultation with the rheumatologist and find a way of relieving this very unpleasant symptom.

Gemim

[CarolineC57 in reply to gemim]

Hi Gemim. Sorry you've got this horrible taste and swallowing problem too. It's awful, isn't it? When you try to explain it to someone it sounds like it shouldn't be much of a problem, but it really does get you down when it's 24/7 and makes you feel sick all the time.

That's very interesting what you talk about, as I'd never heard of Zenger's diverticulum before. I'll look into that and see if I can follow it up with my doctor. I'm afraid my ENT doc simply discharged me when he couldn't find any tonsil stones so it's just my GP who is trying to sort it but has never come across anything like this before so is out of his depth really. The barium swallow test sounds very unpleasant but it might have to be done. I have had a couple of barium enemas in the past so it can't really be much worse - lol!

Unfortunately, I don't hold out much hope of a diagnosis and some help when I see the rheumy as I've been fobbed off so much in the past I'm really expecting it again - particularly as my blood test results are still negative. They don't seem to take much notice of symptoms nowadays.

Anyway, thanks very much for your reply. All the best to you too.

[OldTed60 in reply to CarolineC57]

I have this problem too - ever since the onset of inflammatory arthritis 12 years ago - but 24/7 for the past 3-4 years. I have no idea what’s causing it but I have Sjögren’s and scleroderma overlap with severe gut involvement from head to toe. Despite the seriousness of this overlap disease and many related problems, the foul taste is my worst symptom by far. I have no suggestions for how to manage it or which of my autoimmune diseases to blame.

But I think probably Sjögren’s has caused neuropathy and damaged my vagus nerve plus I have the paralysed gut so could be gases coming up - but I have no halitosis I’m reliably informed. Sjögren’s often alters the chemistry of the saliva I’m told but there are other issues can cause dysguesia such as zinc deficiency and long Covid. My oral medicine dr advised me to use a website called fifth sense for advice but I suspect I’m beyond sorting this now so I just suck sugar free sweets all day long. Miserable - you have my total sympathy at least.

Here’s the website just in case it helps: fifthsense.org.uk/smell-tra...