New to PBC

[Leeanne83]

Hello I have just recently been diagnosed with PBC, I have just turn 38 today. I was diagnosed last Friday, iam so worried about this. My mum passed away at age 54 from liver failure, I have just started urso on Monday 250mgs twice a day is this the standard dose as it seems quite high??

[Kakey]

pbcfoundation.org.uk/newly-...

Happy Birthday Leeanne, hope you're able to celebrate, even in these difficult circumstances. I understand completely how worrying it is to get diagnosed, such a shock.

Urso is dosed according to weight, at 13-15mg/kg. So 500mg is quite a low dose, unless you're small/light. But some consultants build up slowly to the correct dose, to mitigate side effects.

So sorry to hear about your mother, I can only imagine how much worse that makes things for you.

The PBC Foundation is the best source of info, so you're in the right place anyway. Best wishes x

[sezzey]

Hi Leeanne83 So sorry to hear about your mum. I was hit with PBC this June. I was told I had 'Deranged Liver scores'! It's a tough diagnosis and I am still in the process of finding out how poorly my liver is. Thankfully I have no symptoms. I am on URSO and would agree that it should be prescribed according to your weight. 14mg of URSO per 1kg of weight. I was started on the full amount. I take 900mg per day (I am 9 stone 9). Contact the PBC foundation - they are a fantastic source of honest information. I scared myself stupid looking up stuff on Google. Take care.

[Leeanne83 in reply to sezzey]

Thank you 😊 xx

[AngelaBarron]

Hello Leanne

Sorry to hear you are so worried by your diagnosis. It is frightening to begin with. I’m glad you have been started on URSO straight away, it really can change your life if it works for you. I’m old, in my 70’s and my mum had PBC and lived to be over 100, so we’re not talking about a death sentence here! Just take a deep breath, read everything you can from the PBC Foundation, not Google, join the foundation and take control of your condition and your life. It’s not the end of anything, just another of life’s custard pies!

[Leeanne83 in reply to AngelaBarron]

Thank you so much your reply has ment alot xx

[Leeanne83 in reply to AngelaBarron]

Thank you 😊 xx

[Hidden]

Hi Leeanne83,It is a massive shock to be diagnosed with something, even harder when most of us had never heard of PBC when we were diagnosed.

I was 33 at diagnosis, I’m 37 next month. I agree with what everyone else has said, join the PBC Foundation and get your information from there, google is just the worst!!

Your dosage of urso is probably correct but it goes by weight as everyone else mentioned, I’m overweight so take a higher dose.

Any questions you know where to ask xx

[Sydgal]

Hi LeeanneYour the same age as me, It difficult being diagnosed with a chronic disease at such a young age. The PBC Foundation helped me alot when I was diagnosed two years ago.

You are not alone this group os wonderful as evis willing to help when you have questions.

Stay positive and try to live life to the fullest x

[Leeanne83 in reply to Sydgal]

Thank you so much, its been such a roller coaster ride these last few days. Full off emotions. I'm trying to put on a brave face to my family but inside I'm terrified. I have joined to PBC foundation and have looked through alot off the posts on it and some have been really helpful.

Thank you for your reply

Leeanne xx

[zinchunter]

I'm sorry about your Mum. I take 1000mg per day for 67kg to the common formula that you have been given. If LFTs drop that's fine. If not, like me, you will need a secondary treatment. But for most people the URSO do the job alone.

Best of luck. You've caught it early and it develops slowly and the PBC Foundation gives great support. William

[Leeanne83 in reply to zinchunter]

Thank you William xx

[Tuppence67]

Hi Leeanne, try not to worry. Urso dosage is based on body weight. I'm on 1g a day (I weigh 76kgs). You're probably lighter than me 😂 but always check, never be afraid to ask.I lost my Dad to liver disease too. I wish you all the best and hope you respond well to it.

[Leeanne83 in reply to Tuppence67]

Thank you xx

[Jude1]

Leeanne83I take Urso 150mg twice daily two in morning two in evening so that's 600mg daily basis.

I wouldn't worry it really depends on how bad the scarring is on your bile ducts. If you really worries then speak to your consultant or GP. X

[iagra]

The Urso dosage is calculated based on your body weight. Your doctor should prescribe you the correct amount based on that. What you take is not a lot. I am taking 1000 mg /day. I'm 5'2", 125 lb. Good luck!

[Ash322]

I have been on Urso for years and have always had 2x2 capsules per day. Occasionally I go through an "Itching all over stage", which I seem to be in at the moment. I have moved recently and it made it difficult to attend my Gastro Appmt. It was rescheduled for another city and I go on Sept 14th. Your Urso is prescribed by your weight. I'm quite heavy so I have a larger dose than you. Things are tough at the moment, what with Covid jabs and I had a knee replacement about a year ago. Now my right hip is really painful. What do they say?, "It never rains, but it pours." Good luck and keep your chin up. Maybe ask your Gastro about your dose and get them to explain it to you. I must ask if they can increase my dose as I am 96 KG and may need more URSO.

😷😀

[Lj28]

Sometimes they start on a lower dose and titration up to minimize side effects.

Certainly talk to your doctor.

[Leeanne83]

Thank you all for your comments. I have a telephone appointment with my doctor on Monday xx

[Odieweb]

Best wishes with your journey with PBC and so sorry to hear about the loss of your mother. I'm sure you miss being able to talk to her about this. However as many have said you are in the right place here and with the PBC foundation. Each of us is different but if you respond well to URSO you will have a long and fulfilled life, despite the diagnosis. I hope the appointment went well.

[Leeanne83]

Thank you 😊

[Redbird5]

I’m very sorry about your mum. I’m still in the process of getting a diagnosis and I wish I had words of wisdom but I’m just like you, feeling scared. My first appointment with my gastroenterologist is 1 week away. These folks are so helpful and kind! I hope the Urso is effective for you! All the best and hugs!

[gillrich]

Get hold of the PBC foundation they will help you with all up to date and accurate information