Ursodeoxycholic and Bizofibrate

[Sallam]

Good morning all, I actually got a response from my specialist regarding my original question, which was ‘ Can I take/ mix these two medications together in one dose? Surprised as I was, the reply was ‘ Yes, you can mix these two meds’ together and take them in the same dose’! SO now I am wondering why some of you lovely people have been instructed by your specialists to keep them separate’! I am very interested to know.

I also requested that I have a fibroscan as I have only had one at the very beginning of me being diagnosed with autoimmune and PBC. I have a friend who is under the same specialist as I, and she has had scans every six months since she was diagnosed 🤔🤷‍♀️ So again I am confused! I do not understand how my specialist can know the condition of my liver if he doesn’t request me to have regular scans done ✅ how would my specialist know if I was at the stage of needing a part transplant or a complete transplant {taking also into consideration that there would probably be a long waiting period if a transplant was needed}, I do not want to be suddenly told that it’s too late and that there is nothing that can be done because the specialist didn’t have access to scan results in order to make a decision about my need for further treatment (ie. part transplant or full transplant too late) I do not want to suddenly be told that my liver is fully serrosiss (which is what has happened to my friend) who is under the same specialist as me AND she WAS having regular scans!!!! 🥺 very worrying!

I have to request my regular blood tests with my GP for my liver function but I believe that bloods show the function of the liver but not the condition! Am I right in thinking this? All in all I am losing confidence in my care plan and I do not feel like I am being looked after properly regarding my illness.

I hope that nobody else is going through this extra stress regarding their care! Take care and stay safe people.

Regards,

Sallam.

[PBCRobert Partner]

Hi Sallam.

Thank you for your post. There are many questions for me to work through. I can only give general answers. That said, it would be good to chat directly where maybe we can help more directly.

I hope you have joined the PBC Foundation proper. pbcfoundation.org.uk if you want to join us. It is free.

So to your questions. Whilst there is no one standard care programme for PBC, there is (with a number of guidelines to support) best practice. That best practice will depend in a number of factors: age, sex, urso response, and/or when you were diagnosed just being some examples. So 2 different people will be on very different care pathways for their PBC. And this is a good thing (assuming they are both on the correct pathway for them).

There are some drugs that can be taken with Urso, and some that absolutely *must* be taken separately.

Staging, similar to liver tests, is not necessarily about an absolute number. Trends are usually more important than just figures. PBC, when it progresses, tends to progress slowly over many years. Even those who progress quickly tend to do so over years, not months or weeks.

In terms of transplant, your PBC would not be a factor in deciding if you have a partial or full liver transplant. There are a huge number of factors that play a part in that decision, most of which are about factors not related to you, as a potential recipient.

Confusingly, most liver “function” tests don’t actually measure liver function, so this is a bit of a misnomer. If you have read our website, our compendium. “Living with PBC, or our App you will have read the phrase “liver biochemistry”.

Liver biochemistry tends to show amounts of certain compounds that then allude to processes and how much of a process is happening. That said, reading liver biochemistry is a bit more of an art than a science. One piece doesn’t make the jigsaw. However many pieces together give us a bigger picture.

As I said earlier, happy to go into more detail if you want to contact us directly.

Yours,

Robert.

[Sallam in reply to PBCRobert]

Hello Robert, Thankyou for your response to my post. I would appreciate some help with understanding the issues that I am having with my care plan.I am a member of the PBC foundation.

Regards,

Sallam

[PBCRobert Partner in reply to Sallam]

I have aent you a message.