Canker Sores/Mouth ulcer

[Tramezzini]

Hi everyone,

PBC and Mouth Ulcer when runned down?

I had a sinus infection for 2 months and had 20 days of antibiotics for it. (This was in July and August- last tablet was taken in The beginning of September from the antibiotics)

While on antibiotics- I developed ulcers inside my lower inner lip that kept coming and going (red circles/oval with white outer corner) and sometimes there was more than one in a clusters

I took Double strenght probiotics before after and now still taking probiotics (Lifespan brand)

The GP told me on the 3rd of October to use Kenalog orobase paste which removed them on the inner lip, i am still on it for an other week.

Today, i developed it on my tip of my tongue.

It is quite depressing i am not sure why I develop them…

My blood test is normal tests ; FBC ; including b12,vitc and zinc

Is this something that happens to anyone? What can we do about it! I never had this before 🙄

[butterflyEi]

I see no one has been able to respond - this is not something I have suffered from, certainly relative to PBC so my experience is limited to a general understanding learned over the years.

Ulcer and mouth sores indicate to me that you are run down in some way. I read that you are under the care of your doctor but I do wonder if the pharmacist may be able to recommend something to you.

hope you can get something to help you.

[Tramezzini in reply to butterflyEi]

I agree. My iron has fallen but it has been down for a while and i only recently got it. The antibiotics (Duoforte for 20days) must have killed so much good bacteria.i read that 10 day of antibiotics treatment takes 6 months to restore the gut flora… so maybe my body is still runned down

[pbcgirl]

I find this interesting. I have not taken any antibiotics but find as of the last year I almost constantly have canker sores/ sores on tongue, cheeks and inside lip. I have no clue why this is happening. I am soon having bloodwork so that may tell me more. Thanks for posing the question.

[Tramezzini in reply to pbcgirl]

Let me know how you go- keep us posted.

[Readlots]

ulcers on you’re tongue are just the worst. How can such tiny things cause so much pain? I use Bonjella or Anbesol on mine. They are meant for babies when they are teething and I’m a real baby when I get one! Best to check with a pharmacist before you use them to make sure they won’t affect your liver.

[Tramezzini in reply to Readlots]

thanks for the tip. Do you know why you get them?

[Readlots in reply to Tramezzini]

For me, I think it’s when I get run down. If I push myself and I’m not resting enough or eating well that’s when I get them. But others on here have suggested a link with Sjorgens. I have PBC and autoimmune hepatitis. I know dry eyes and dry mouth can be linked with PBC so I guess it could be linked with that.

[Tramezzini in reply to Readlots]

I stopped with Kenalog Orobase after 15 days and guess what happened…. I got two new ones.. i feel so drained i am about to cry.

[YvonneGS]

Those are very painful. Raw honey is great to heal each sore, and maybe changing your toothpaste. There are more ideas here: brownthumbmama.com/heal-can... .

Ultimately though, you need to find the root cause to prevent them. Probiotics can be great, but much of their value is lost in stomach acid if taken as pills. Might I suggest fermented foods, such as kefir or fermented sauerkraut (not the ones in vinegar) to help restore healthy gut bacteria? Takes times, but diet is crucial. Hope it resolves soon for you!

[Tramezzini in reply to YvonneGS]

Thank you!

[Chris21]

I get mouth ulcers on inside of my mouth, sometimes on the tongue (the worst!) also on the outside of lips. I also often suffer with sinusitis but mine isn’t caused by PBC (or I don’t think it is) it’s because I have sjogrens and lupus sle. Do you have any other auto immune disease? I use genigel mouthwash and gel which helps sooth the mouth. For sinusitis, a warm eye mask helps as well as nose wash and eye drops!

[Tramezzini in reply to Chris21]

i havent been investigated with any othet one, but i am sure i do as it looks like most do. Do you?

Do you use kenalog orobase paste at all? And do you see any specialist for it?

[Chris21]

I was diagnosed with lupus sle and sjogrens before PBC. I still struggle to understand how PBC has effected me because at the time I had no symptoms and it was blood results that panicked my gp and sent me off to gastro. Looking back I did has two bout of pancreatitis which may be related to PBC, but since taking orso tablets bloods always show in range.

I’ve never used kenalog orobase paste, tried many gels and lotions before I stumbled across genigel which seems to work for me, I also use a toothpaste that doesn’t have sls in and biotene mouthwash. I do occasionally have to have prednisone tablets when i get inflammation in respiratory/sinuses.

I see rheumatologist who oversees everything and sends me off to other consultants if he thinks it’s necessary, I also see the gastroenterologist and optometry every year for general check up. Apart from that I also see regular dentist who is aware of my mouth problems and we discuss if I need alternatives.

[Chris21 in reply to Chris21]

Oh, also dont use a hard toothbrush, medium I use sometimes otherwise soft brush and tape if needed.

[Tramezzini in reply to Chris21]

I have sls free toothpaste, xtra soft toothbrush i was on kenalog orobase dor 14 days and as I stopped after one day 2 new ones showed up😭

[Tramezzini in reply to Chris21]

Is your lupus connected to mouth ulcer? What other results did you do/blood works that showed that? Can your bloods be normal and you still have that?

[Chris21 in reply to Tramezzini]

the way I’ve understood my auto immune diseases, that they are all connected within my body system one way or another.so what causes dryness, mouth sores, fatigue, joint pain? Could be any of them. If you look up any of the long list of auto immune names you’ll find all have similar symptoms.

I’m not an expert so not sure how many tests there are for the various illnesses. Most show up in blood tests that look for specific conditions. Yes, my first lot of bloods for lupus showed negative. 7years later and lots of trips to gp/a&e for feeling ill finally showed lupus, which then led to other tests, like scans to see if organs were ok. Sjogrens was diagnosed by paper strip put between eye lid to see how many tear drops were caught, I’ve heard some have had lip biopsy for diagnosis.

Your mouth ulcers could be caused by numerous reasons including PBC. If the paste you were/are using worked, why stop? Keep going back to your gp until you find a solution that will help keep mouth ulcers away or at least to bare minimum. If your body is ‘run’ down that in itself could be the reason. Hopefully your GP will help find the answer.

[Readlots]

Don’t cry, you will find what works for you. Give the liver nurses a call on the BLT helpline. I bet they’ve got some suggestions. Have a big virtual hug from me