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PBC Foundation
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Why does Urso just quit

I am reading that so many with pbc or psc took Urso for years and then all of a sudden it stops working for them.

Does anyone know why Urso stops doing its job?

I also read somewhere that if you have pbc that you can’t get psc. That you can not have both diseases. Is this true

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Jennyhadenough,

That sounds awful. But I have read that 40% of people who take URSO are non-responders. I wonder if the people you're reading about are included in that 40%? Unfortunately it's a high percentage isn't it? And I wonder too if it takes into account secondary or more AI's one may have?

It's scary. How you feeling tonight?

Stella ❤

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I’m good how are you my beautiful friend

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You're very sweet.

I'm OK. Doing much of nothing tonight. Slight upper right quadrant ache.... but I had sugar 😕 so it's my own fault.

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I have been having a lot of pain there as well. To much actually. My Dr said that the only way to know if azathioprine is causing it would be to stop taking it for a few weeks. He said that he would have to raise my prednisone to a higher dose if he did that. I’m not so sure that I can go through raising my prednisone again. I can’t get my family to cooperate with me taking my meds. The stress is awful. I sleep almost every night in my rv for peace. Everything is my fault. I’m afraid I’m going to have to make a choice here. There really isn’t a right answer because I was never allowed to work and learn to support myself. I may have to leave my family. My dogs sleep with me in the rv. Lol willow is jealous of the little pup. She growls at her when she wants my attention which is always. We were hoping to move to move to Orlando which is more civilization but my 19 year old doesn’t want to move so she keeps her end of the house as cluttered as she can to keep us from listing it.

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Awe.... ❤❤

And stress can cause issues health wise. It's difficult getting others to understand what is actually going on with us.

You do whatever you need too in order to take care of yourself.

I remember being a teenager... Unfortunately I remember it was all about "me", much to my regret now. Lol... I missed out on getting closer to my younger sisters. They are 9 years younger. Try not to take to heart what teenagers do. (And that's advice from someone who never had kids.. Lol, so probably not great advice. 🤔)

But I do know that whatever is going on around us.... We got to take care of ourselves, emotionally, physically, and for me, spiritually for sure. Sometimes we are all we got! ❤

So you do what you have too! It's bad enough our bodies are in a battle.... We sure don't need the added stress.

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My adult teen works at the trauma unit at a very well respected hospital and sees cirrhosis of the liver and death every day. She graduated high school with the license she needed to get a job that had over 200 applications and they chose her. She knows what the hell is going on. She started her medical program in 10th grade. I darn near had a heart attack when she brought home her medical books from high school and realized that the pages in that book had real body parts in it. She couldn’t do that part of her homework at the kitchen table because my elementary school aged child was doing hers. Lol she had to hide her books. My daughters are smart. They are above their years book wise. They know what the heck is going on. They go to the Mayo with me. My 11 year old is starting to test me but I have more experience now. She’s much better.

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Well gosh,

I guess there's no excuse.

Maybe its a defense mechanism they have to protect themselves (emotions) that something is scary wrong with mom. 😕❤

I don't know. But, hang in there.... We understand.

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Wow that’s good to know , having just started taking it x

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It's interesting you mentioned right upper quadrant pain. I get it quiet bad when I eat junk.

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I know that I can’t eat peanut-butter anymore. I may have to lighten up more On the carbs. But a dr told me that constipation can cause pressure on the upper bowel.

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If urso was helping to keep numbers in line for some time but LFTs eventually became elevated, it’s not so much that urso stopped working as it is the progressive nature of the disease. Urso’s not a cure, it’s meant to help to slow progression. At some point the disease outpaces the effects of urso, but it may still be helping, so don’t discontinue it without first discussing with your doctor, preferably a hepatologist.

PBC and PSC do not usually overlap, but it has occurred. ncbi.nlm.nih.gov/pmc/articl...

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Oclivia is For the people who doesn’t respond ursodiol so I don’t think you have to worry much about that 👍🏼

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Thank you Sachin for your wise and positive words . I was starting to worry . I have my first blood test coming up this week to see how I am getting on . Your words were up lifting

Thank you

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I wouldnt worry too much there will be other medications out there if urso doesnt work i have spoken to some pbcers here in ireland who are on urso for at least 10 or 15 years and it is still working i think it is important to have a good hepatologist you can trust and take it from there

I started on urso last week and i am just so pleased i dont have side effects

Take care

There is a lot of change going on in your life which is stressful

I couldnt cope with moving house and i am 2 years off retirement so at least i can take things easy

Hope all goes well for you

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I started three months ago . I do not have any side effects either ,

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I have never heard that. It’s good to know. I am twenty five years stage one on urso. The recently upped my dose ftom 1500 mg a day to 2000

I’m lucky

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Thats great to hear it gives us hope

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That's great!!!

What tests are your doctors administering that you know you are still stage one?

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Hopefully a biopsy

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