I was diagnosed with PBC some eight weeks ago so finding this Forum very interesting.

[Cavalier]

However I would like to enquire whether any others suffer from a dry mouth syndrome? I have had a biopsy for Sjogrens which proved negative but I still have a very dry mouth and a sandy taste in my mouth. Urso has helped slightly with the dry mouth situation but I am wondering whether this can be attributed to PBC. I have had this dry mouth situation for some eighteen months prior to diagnoses of PBC and although Urso has alleviated the problem slightly it is still very much there. I, myself, am convinced it has to do with PBC. Cavalier

[Cristina_Romania]

Somewhere in the previous posts here there was talk about Sicca / Sjogren's Syndrome, and I've posted some studies showing that, despite no medication available for this, Omega 3 supplements have shown a relief of the symptoms in some patients.

In the PBC Foundation "Compendium" about PBC you can find more about this common problem of PBC.

[Wendom]

Hi there I too have dry mouth my salivary glands are so painful I had face pain for about 4 years now. my painful glands where so bad I stopped eating and dropped three stone also for many yeArs before the pain I used to not be able to eat food without a drink I googled my symtoms and it kept coming up with sjogrens my dentist also asked me had I heard of it so I went and got blood tests all negative and my biopsy to was negative all these tests led to pbc diagnosis I spoke to liver consultant nurse only last week she said its from sjogrens not pbc and it goes hand in hand with pbc there's a great forum called sjogrens world many people on there are zero negative or only tested positive after many years also I spoke to a loveley lady who is a voulenteer for the pbc foundation and she told me she has spoken to quite a few ladies who's blood turned positive eventually for sjogrens I also have dry eyes by the way I'm AMA positive but normal liver function tests hope this helps Wendy x

[mumofthree]

Hi Cavalier

I too have a very dry mouth and drink constantly. My tongue gets very sore because it tends to stick to the roof of my mouth, I use bongela on my tongue which helps with the soreness. I have not found it too troublesome but there again I have only had this problem for the last few months. The dry mouth started about the same time as I also started to suffer with itching deep inside my ears. My PBC was diagnosed Jan 2011 and have been taken URSO since then. I have not had the opportunity to mention it to my consultant or GP but will eventually. From what I have read on this site many of us do have these problems.

Take care of yourself

[Hidden]

It sounds like you have all been tested for primary Sjogrens, you can actually have secondary sjogrens due to another autoimmune conditon. I have secondary sjogrens and mine has been diagnosed due to having an ultrasound of my neck, which shows my salivary glands are being destroyed (as well as having treatment for my terribly dry eyes).

[Oidra]

I have a very dry uncomfortable mouth at times and feel this is just another effect of PBC to deal with. I have a saliva spray ( saliveze) which helps and am told to have sugar free chewing gum to get the saliva going. I don`t particularly like the idea of chewing gum but it does help and I always carry some. It isn`t very nice when you can`t get the words out because everything in your mouth is glued together but these 2 things really help.