PBC and other autoimmune conditions

I have had PBC since 2004 and yesterday went for a Sheerscan, my consultant doesn't think a biopsy will change anything. In the last six months have had a strange sensation in my mouth, a sort of tightness inside my cheeks and lips. The dentist has diagnosed an autoimmune condition called Sjogren syndrome or Lichen Planus - I would need a blood test to verify. I have an under active thyroid already? Does anyone else have this mouth condition? I'd like to learn more.

16 Replies

  • I have Sjogrens which for me is a very dry mouth and sometimes dry eyes. It seems to vary, when I wake at night my mouth is very uncomfortable with a very dry top palate. The oral balance gel helps. Other times it doesn't bother me as much.

  • Thanks Oidra for that info. Do you have any other auto immune conditions? I do get dryness in my eyes sometimes but my palate so far is okay. Next step will be to get it checked out with a blood test.

  • No, only PBC, well under control.

    I saw a specialist for Sjogrens but I thought I was wasting my time. Keep taking the gel and the eyedrops was the result he offered on my third and final visit

  • Fairly certain that Sjorgrens and LIchen Planus are two totally separate autoimmune conditions. Think I have the former: I certainly have the latter. Again it was my dentist that discovered it, and she checks it on every visit. I had to have a biopsy to confirm definitely. It wasn't pleasant, but worth having to rule out anything more sinister.

  • That's very interesting thank you, a biopsy has not been mentioned so far. It is not much of a problem for me at the moment. I was more than a little concerned before I saw the dentist, the PBC is starting to be more of a concern now and I like to keep my mind at rest over anything new that comes along.

  • i have other autoimmune diseases as well but not that one. I really hope your dr can shed some light on it for you

  • Thanks vm Becca. My dentist commented that my immune system is too strong ie., it goes in to overdrive when it doesn't need too, which was an interesting angle on the problem.

  • Millymollymandy57 I have all your symptoms, just that my throat is also sore from time to time.. Then the dry eyes,dry mouth and eczema on hands The thyroid was under active for years, now hyper. And the terrible itch an fatigue. Seems like it is progressing over the years. My blood results for liver enzymes are better than ever, still far from even close to normal, but so that one should think the itching and other problems will be less

  • I know, likewise, it's no joke, there are days when I feel 100%, I avoid alcohol, try to drink plenty of water and eat unprocessed foods most of the time, walk for miles, avoid stress etc., I think all this helps. There are still signs of progression in my blood test results, lower albumin levels being the most recent and now this mouth thing. It's good to talk about it openly to people who are also in the same predicament. I'm probably going on about it too much, best of luck Rockie.

  • Same to you. I know I must stay positive, not always easy

  • Hi I have it it's quite common you'll probably find a few if us have it. My eyes are worst manage the other with sugar free gum or sugar free lemon drops but you can get something from the Drs if you mouth is really bad. I use gel in my eyes from the Drs. my thyroid hasn't gone yet but they are expecting it & keep testing. I have just developed a scalp problem another auto immune condition, & a couple of other things also auto immune related . Specialist tells me it's all to be expected with PBC. I'm just waiting for the next all the time. I don't think I'll leave because of the liver but rather that my body is just fed up of attacking itself. x

  • Thanks for your interesting perspective teddybear . Yep the body is attacking itself, maybe I should go one step further and take up meditation and yoga and drink green tea. Well it might help!

  • If you have multiple auto immune conditions you may want to address them through a combination of diet, vitamins and supplements, and Low Dose Naltrexone (LDN). My son, who has Primary Sclerosing Colangitis (PSC, which is similar to PBC, but not exactly the same), and Ulcerative Colitis (UC), both auto immune conditions, and has been successful with the aforementioned strategy for re-regulating the body's immune system. The following is a post I have routinely sent to other new posters on this web site that provides a bit more information.

    When I see posts for newly diagnosed people, I routinely reply citing the experience of my son, who although not having PBC, does have PSC (Primary Sclerosing Colangitis), a very similar liver condition that is also thought to be of an auto immune nature. He has been successful in using diet, vitamins/supplements and most importantly Low Dose Naltrexone (LDN) to return to a normal condition. All his liver function values have returned to normal for about 1.5 years now, and all his inflammation markers are normal as well, and he is symptom free. Go the the LDN Foundation web site; read their materials and links to Dudley Delaney's web site and blog; and Google Dr. Burton Berkson and watch videos about him, particularly his 2009 presentation at a National Institute of Health conference, and also read his books on LDN, Alpha Lipoic Acid and B-Vitamins, (related diet strategies) and you will find his regimen of vitamin/supplements that improve your immune system, and the method of action of these items to help your body's immune system return to normal. Gluten and dairy free diet can help to reduce leaky gut and related intestinal irregularities that are typically at the root cause of many auto immune conditions. Some people also believe that a non-GMO diet will also help. Join the Yahoo LDN User Group and you will receive emails from LDN users and questions from inquirers about the application of this inexpensive and low risk/side effect drug in addressing a range of auto immune conditions and returning your body's immune system to normal or more normal condition. Many doctors do not know about LDN, or, since it is used "off label" for auto immune conditions, will not prescribe it, so do not be surprised if you get a negative reaction from your doctors. Find one who is LDN knowledgeable, or search the above resources about its availability not through your current doctor.

    It takes a lot of time and effort to do the research and investigation, but with main stream medicine offering very little help to halt the progression of many these auto immune diseases, I believe the above items offer a reasonable and low risk strategy to address auto immune conditions. You can contact me if you have any questions, and I will try to point you in the direction of resources that will help to answer them.


  • Thank you Warren, quite a lot to think about there you have not stinted on the research, it's good to know your son's markers have returned to normal and he is symptom free.

  • Hi. I have just recently been diagnosed with oral lichen planus which was noticed by my dentist and I had to have a biopsy to get a definite diagnosis. Apparently mine is mild but I had to change my toothpaste to one that doesn't contain SLS. Which is an industrial foaming agent that is in many toothpastes. Iuse sendodyne pro enamel which is free from SLS. Also avoid citrus and spicy foods. I also have Sjögren's syndrome affecting my eyes more. I was diagnosed withPBC in 2012 and now st stage 4 with cirrhosis But bloods are good and I feel fine. Take care. 195748

  • Hi. Yes, toothpaste sets mine off too, I should check mine out for the SLS. Am finding citrus fruits too sharp and spicy foods intolerable. My consultant was cagey about what stage I am at hence prescribing the Sheer scan FibroScan for an up to date diagnosis. Good that your bloods are good and you feel fine, I hope they continue to do so.

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