Hi Everyone,
Diagnosed last Nov with PBC.
2 weeks ago I started getting a really bad taste in mouth and some dry mouth. The taste is terrible ! How do you treat this to get rid of taste?
Does anyone have Sjogrens w/ PBC? What are the symptoms? How is this treated? I see my doc in Oct. Thanks for any information.
That must be terrible. So far I have not tested positive for sjogrens. My aunt had it and what I remember is she had to suck on hard candy to help produce saliva. Has to be an unpleasant thing.
yes it’s really weird when I drink water and it taste awful. I will talk with my doctor to confirm this is what I have. Thank you.
Hope all goes well. Fingers crossed😊
there’s a website and/or newsletter called The Sjogren’s Advocate. Though I tested negative for SSA-SSB I have many symptoms of Sjogren’s along with PBC. Going to pursue a bit further. I think it’s common to have overlap or they may be finding that PBC itself manifests with similar problems as Sjogren’s. Still so much research needed!
Thank you for responding! I learn so much from the group.
thank you so much !
Try sucking salivax pastilles, they are my saviour with dry mouth. I get a special toothpaste from my dentist as well. Dentist told me to suck ice cubes. It’s hard to talk when you have no saliva. I’m not diagnosed officially with Sjögrens as my Rheumy doesn’t admit to anything if it’s not in the blood test. Others doctors have almost told me that’s what’s causing my dry eyes and mouth. A lip biopsy can also be done but I’ve not been offered it. I think I’m doing all I can myself to help this situation. Best wishes
Thank you.
I have lupus sle with an overlap of sjogrens which then went on to PBC, raynaulds and now arthritis and neuropathy. All auto immune related. It’s hard to seperate which causes what as they all have similar traits. Similar things are fatigue and joint pain. Sjogrens causes extreme dryness in eyes, mouth and vagina. I was diagnosed by having paper strips just under my eyelids to see how many tears there were.
For the awful taste, as some have suggested, sucking flavoured ice cubes, keeping hydrated. There are all sorts of toothpastes, mouthwash, gels that can help. If you buy sweets to suck be careful of sugar content as sojgrens can cause mouth ulcers and tooth decay more than usual.
Best thing to do is see a doctor or dentist who will be able to diagnose if it is sojgrens that’s causing the problem. Hope you find a solution that works for you 🙂
Thank you so much. The bad taste is worse for me than the dry mouth. Even water taste bad ☹️
I struggle with plain water because as you say it tastes awful, iced water is slightly better or a bit of squash. Sometimes even my first cup of coffee in the morning tastes as if the milk has gone off. I’m trying fruit teas at the moment which seems better.
Biotene mouthwash and a tongue scrapper are my best friends 😁
I will try that as well. I have handled my PBC as well as to be expected but this has really affected me. Thank you for the post. Very helpful.
I was diagnosed with PBC first about 4 years ago and then shortly after with Sjogrens and a bit of raynauds, nothing severe. I had the lip biopsy to know for sure for the Sjogrens diagnosis(I highly recommend doing this). I'm almost positive that I've had Sjogrens for several years being I had symptoms for a few years before my diagnosis. For me the severity of dry mouth will go up and down and same with the dry eyes. Definately the muscle/joint pain is here to stay. Due to the dry mouth I have had a lot of tooth decay. There are times too that things don't smell like they should and my taste is off (as you are experiencing) as far as things being way too salty and wine will be bitter when I have a glass (guilty as charged, lol). I wish you the best!
thank you for the info. Did you ever have a bad taste in your mouth? Sometimes I have it most of the day and other times only periodically thru out the day.
l was diagnosed with sjogrens over 20 years ago and PBC in 2019. My sjogrens causes me more problems than PBC. Aches, pains, very sore dry eyes, dry mouth ,sore tongue which sometimes split if eat eat anything acidic and of course dry vagina. Sjogrens goes hand in hand with PBC and because l have it my PBC was picked up by the medics before it caused any damage
Wow thanks for replying. I’m learning from all in this group.
Hi - I was diagnosed with Sjogrens a few years ago. Had an appointment with a specialist nurse in rheumatology and mentioned the problems I was having with my mouth.
Stickiness, ulcers and dryness, had to sip fluids with dry foods to swallow , bad breath. She referred me to our dental clinic where they did a biopsy and it came back positive for Sjogrens.
I was seen in the clinic regularly for a time, now its once a year. I buy Oralieve spray and use it mostly at night, sugar free sweets and chewing gum help and mints. The consultant in the clinic prescribed Difflam for the ulcers, have been using that for a long time but it does get rid of them. I have vaseline and lip balms for the dryness.
Lack of saliva is a pain in the you know what but its manageable once you know what you're dealing with. My sense of taste comes and goes as well.
What was Lupus with a Sjogrens overlap is now Sjogrens with an overlap of Lupus. I'm sure you'll find out what works best for you once you've seen your doctor.
Thank you !
You're welcome, I hope it was helpful. My gp didnt pick up on an immune system problem and assumed I had RA.
When a blood test was done it came back positive for SLE and I was given the correct medication. There's a whole story behind that but I won't get into it. Hope all goes well with you, Sjogrens is manageable 🙂
I was dx’d with PBC in 2018 and Sjogrens in 2021. I developed bad bad rosacea that I thought was lupus and requested a test and my pcp snuck in sjogrens test. My kidney function and every thing was wacked out to the point I needed a kidney biopsy to confirm nephritis cause by sjogrens. Make sure to watch your egfr and creatinine in your lab tests. Mine was as low as 43 egfr which is not good. My rheum said sjogrens and pbc overlap is common but the kidney disfunction is rare.
Hey, I have Sjogren's and pbc also. It is also an autoimmune disease. With me, my eyes, nose, mouth and skin are affected. I use Hylo night eye ointment at bedtime and Evolve eye ointment for daytime. A saline solution for nose and a high fluoride toothpaste to prevent tooth decay and gum disease. I also use gels and sprays designed especially for Sjogren's as I have no saliva. I have weeks when flare ups are bad. I hope this helps. 😊
Yes very much. Thank you. Are you in the US? I have not heard of those products here but will do some research. What test were you given to confirm Sjogrens?
I'm in the UK. My gastro consultant and also my dentist confirmed Sjogren's by my symptoms. I also have autoimmune hepatitis and antiphospholipid syndrome, all autoimmune diseases. I had brain surgery and further investigations discovered these through blood tests, a lumbar puncture, and liver biopsy. Your clinician should be able to diagnose Sjogren's by your symptoms. I wish you all the best.
I tested negative for sjoegrens (sp?), but, yes, I have dry mouth, which seems to go with the territory. Saliva helps protect the teeth, so you might want to ask your provider how to counteract the dryness. You can get OTC lozenges that might help, for example.
Good luck!
thank you!
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