Mouth ulcers: Hi everyone, I had a recent... - PBC Foundation

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Mouth ulcers

JustChillin68 profile image
9 Replies

Hi everyone, I had a recent diagnosis of probable PBC and was started on urso tablets for a years trial to see if my bloods improve. I had been fine on the urso the first month but this last week I've had several mouth ulcers appear, a really sore large one on inside of front lip and smaller ones on edge of my tongue. I had been having problems getting 300mg tablets for my 900mg dose so consultant changed dose to 1g and I got 500mg tablets, these are a different brand. Could these be causing these mouth ulcers?

Anybody else experienced this ? I see liver specialist on Friday so will mention this to him then

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JustChillin68
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9 Replies
DonnaBoll profile image
DonnaBollAdministrator

For sure call those to the hematologist's attention. First of all, make sure you are on the right dose of Urso. If is always based on your weight and may take up to a year for determining if you are responder or not. Dosage is always 13-15mgs/kg of body weight. This is crucial to take the right amount. If you are taking Urso from another manufacturer, I would talk to maybe your pharmacist. They are very knowledgeable. What is your initial alk phos number? You should be having liver labs drawn every 3-6 months. It takes time for most patients to see if they are 'responding' or not. Urso is the first line treatment for all patients' diagnosed with PBC. Please ask any questions....

JustChillin68 profile image
JustChillin68 in reply toDonnaBoll

Hi, my alk phos is high, sits around 600-700. I'll speak to my consultant on Friday about ulcers was just wondering if anybody had this issue . My dose is 500 mg twice a day and my weight is 63 kg so think that's about right

JustChillin68 profile image
JustChillin68 in reply toDonnaBoll

Had my bloods done last week which would be around a month from starting urso so will get results at clinic

DonnaBoll profile image
DonnaBollAdministrator in reply toJustChillin68

Just be prepared for not much of a change after only a month. Standard of Care recommends lab work every 3-6 months. I hope in time you will see a difference. I remember all too well having all phos numbers in that range. Let me know how it goes, please. Glad you feel the Urso does is right for your weight. Remember dosing is only based on the weight - never symptoms or lab results.

DonnaBoll profile image
DonnaBollAdministrator in reply toJustChillin68

please let me know how the doctor appt goes on Friday - and your lab results.

JustChillin68 profile image
JustChillin68 in reply toDonnaBoll

Hi Donna, I'm really pleased with my results today. After 4 weeks of Urso my ALT has went from 160 to 38, ALP went from 740 to 380 ! I didn't expect to see results so quickly , consultant is very pleased and will repeat my bloods in 3 months

DonnaBoll profile image
DonnaBollAdministrator in reply toJustChillin68

Wow!!! that is something to celebrate for sure.... I'm so happy for you. I know that's a weight off of you. 🥳

JustChillin68 profile image
JustChillin68

Yea thanks, I thought it would take a lot longer to see a difference, looks like I'm a responder

DonnaBoll profile image
DonnaBollAdministrator in reply toJustChillin68

I hope it continues for you too!!!

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