Burning/tingling mouth & throat.

[Terralynn]

I have been struggling with a burning/ tingling sensation in my mouth and throat. This has been going on for a month or so. It feels like if I was so super dehydrated, and no matter how much water I consume, it won't go away.

I am stage one PBC. I am on Urso but only 25g/day

Is this a PBC thing or something else?Does anyone have this or know anything about it?

Thanks in advance.

[butterflyEi]

Hi Terralynn

The first thing that popped into my head was is this possibly Sjorgren's syndrome where the sufferer had very dry mouth and eyes. I had a quick look at the NHS Choices website (UK) but the symptoms you have are not described in the article. I wonder if you would be best to see a doctor to get this checked out, if it had been a virus after a month or so surely it would have run its course.

My patient infomation leaflet (PILS) states that Urso is prescribed by body weight. For someone between 63 and 78 kilos the recommended daily dose is 4 by 250mg a day. Have a look at the PILS which comes with your Ursodeoxycholic acid and see what the recommended dose under PBC shows. Just 25g seems rather low but of course any change should be discussed with your doctor. I am 75 kilos (roughly) and take 1250mg a day.

best wishes

[Terralynn in reply to butterflyEi]

Hi!

Thanks for your reply!

My phone autocorrected me for some reason. I am taking 250mg per day. I am in New Zealand and didn't have a leaflet with my Urso. But since my diagnosis two more of my Aunts have been diagnosed. There are 4 of us now with PBC. They messaged me from Canada (where I'm from) and asked about my Urso dose as well. I did some reading and I agree, I'm definitely not taking the recommended amount. I weigh about 57 kg. It's definitely something I need to address with my specialist.

I had read about Sjorgrens, but wasn't sure if there was anything in PBC that could cause these symptoms. Bugger.

Well, looks like I'm going to be starting another push with the Dr's to get some answers.

Thanks for your input. I really appreciate you taking the time to have a look and reply.

[Gingham in reply to Terralynn]

Terralynn, I'm in the US. One of the symptoms of PBC is dry eyes and mouth. I have PBC, AIH & Sjogren's, so I have the "drys". Also, the formula for URSO is 13-15 mg/kg. I am 50 kg and I take 600 mg/day. Seems to be working well. My alkaline phosphatase is steady at 74. All of this info from PBC Foundation and my Hepatologist, who is highly regarded in her field.

Gretch

[swinstan]

I have horrendous itching rather than burning in my mouth and throat, but I don't have the usual PBC itch so far. Doctors have suggested this might be related to hayfever but antihistamines don't help. I'm PBC diagnosed but so far, no symptoms. Sjogrens not diagnosed but I do have very dry eyes and mouth etc.

Sorry, not very helpful to you, but I also would be interested to hear what others might say about this.

[GrittyReads]

I agree that you must check with your medic about your dosage for Urso, as well as being further checked for the dry mouth/throat issue, which could be Sjogrens.

I'm surprised you were not checked for Sjogrens when PBC was diagnosed. It's something that a lot of people with PBC also have/develop. I was checked for all possible autoimmune conditions, especially the ones that are related to the other subtypes of AMA (AMAs or antimitochondrial antibodies - specifically the sub-type AMA-M2 is one of the main diagnostic criterions for PBC, but their are about 6 or more other types of AMA- that code for other autoimmune conditions). I was also checked for all other possible liver conditions.

I would ask to have a copy of all notes and tests from your Dr, and see what has been done, and not done. You could always run it past the trained advisors at the 'PBC Foundation', they host this site : link to their website at the top of the page with phone and email links to contact them. The website is also full of useful info.

Hope this helps, take care.

[Terralynn in reply to GrittyReads]

Thank you! Thats really great direction. I will do that.

I read a lot about auto immune diseases, but when it gets super tech with all of the different serums, I do tend to get a little bit lost lol

Having resources of other PBC patients and advisors is so valuable.

Thank you for your time. I really appreciate it.

[littysgirl]

Have you looked inside your mouth when it looks like that? It's possible that you have thrush which is a yeast infection in your mouth. You would see white spots on the inside of your cheeks, white on the surface of your tongue and possibly white spots on the back of your throat. If so, you should ask your doctor for a prescription. I had this. The medicine made it go away but it came back again after I finished the medicine. Then I went on line and looked for other solutions. One that is working for me is that I drink a tablespoon of apple cidar vinegar (raw and unfiltered - it's cloudy) I mix it with a little warm water so that it's not so strong. I don't mind the taste and I have not had the thrush return again since I started.

Also I have a friend who has had PBC and Sjogrens for years. I was diagnosed with PBC about 18 months ago and I suspect I also have Sjogrens but have not been tested for it. I think they might go hand in hand as both are autoimmune diseases. I also do not think there is any particular solution for the Sjogrens so maybe that's why they don't necessarily test for it. I always have a glass of water with me wherever I go and if I wake at night, the first thing I do is take a sip of water.

[Terralynn in reply to littysgirl]

Thanks for the reply.

No, it's not thrush. Mouth is all pink and healthy looking.

I drink ACV nearly everyday. Love it!

In goingnto have to press the Dr's about it I think. I'm convinced it is linked to something.

Time will tell I guess. The waiting game does get tiring though.

[Gingham in reply to Terralynn]

Forgot to tell you this. I also have a condition known as burning mouth and tongue syndrome . I've had it for 3 years and I think it was just the start of all this stuff. It seems to have subsided some since I started Prednisone for my AIH. Google it. You'll find lots of info. I use special mouth wash and xylitol lozenges; they don't burn. No spicy food anymore. You can get lots of dry mouth items on Amazon.