I've just been diagnosed with pbc, after a positive Ana blood test and liver biopsy and I collect the Ursodeoxycholic acid tomorrow, i just wondered if there was any advice you can give me, doctor was less helpful and I won't now see for 3 months
Many thanks ann
I started ursofalk this week i take 3 capsules together after breakfast so far no side effects i will get blood tests 3 months time to see if blood levels come down
Good luck
If you think your doctor is not helpful, should try to find one that meets your needs. Having this condition is challenging enough. Best to find a doctor who can work with you as a team to manage this.
You need to make sure that you don't take any vitamins or calcium or other meds (pharmacist or doctor can advise better, I am commenting in general) within a few hours of urso. It might interfere with absorption.
Thanks for that information as I didn’t know that. You would think Drs would mention it.
My Hepatologist noted that to me. So I am always cognizant about spacing out meds & vitamins/supplements.
Me as well. My GI asked at what intervals I am taking thyroid & Ocalvia. 6 hrs apart & vit d3 at night, so that’s when he suggested may be absorption issue due to PBC.
6 hours seems good enough. Don't know about your D intake. I take my vitamins (multi, D, fish oil) right after lunch except the calcium supplement which I take at 3 or 4 pm.
They are all spaced far enough apart so shouldn’t interfere with each other. 😊
Good job!!!
In 2010 my b12 was depleted. After injections for 2 months he told me to buy the sublingual because as we age the lining in our stomach doesn’t absorb as well. I know they make sublingual vit d. Would be good if they made it in thyroid.
What can you do about the synthroid? Did doctor advise you?
He increased my levothyroxine & recheck in month.
As a rule, my Internist usually waits at least 45 days to recheck when we have had to go up or down with dosage. But I think my TSH was so low this time he wants to check sooner to see any hint of change.
Good that he is on top of this & taking great care of you.
taking a thyroid medication first thing in the morning.. then waiting 30 minutes before eating is usually recommended.
Good idea
Hi,
Welcome to a great place for support and solid information. And hopefully, you will find it reassuring to see other stories as you start to get used to having the PBC diagnosis. We've all been through the shock and adjusting period- we know the feeling.
I suggest you go to the PBC foundation- link above. Join the foundation ASAP. ( it's a separate membership from this peer support group)
You create a User Name and PW ( it's free). And then you will have access to current medical-scientific info about PBC.
For good questions to ask, once you join the Foundation- log in and you will have online access to the latest "Bear Facts newsletter". (Summer 2017) Download it - its got an 8 page insert with Questions to ask your doctor and basic info on PBC dx and treatments. I found it Very helpful.
The website has lots of other good resources.
Hope this helps.
I wouldn't worry to much I take 250mg Urso tablets x 3 every morning after breakfast with vit D, omega 3 and pain killers (paracetamol) all fine and I have PBC for 14 yrs. If you can live your life as normal as possible you will feel better.
I am just after starting urso can i space it out for a week or so one after breakfast dinner or tea just to get used to it i felt a bit dizzy today so i thought it may be a side effect of urso
I space out my 2 pills, take one after breakfast & one after dinner.
Thanks i will try that tomorrow
Ah thank you for the replys 
I just feel abit unreal about all this, as it started with a painful thumb that was diagnosed osteoarthritis in both wrist and fingers to this, and it feel like here take a pill and go away I didn't even get anything for the itching.
I'm going to my normal doctor this week hopefully she will give me something for that, as I wasn't allowed medication while looking at the liver
But thank you for the advice I will spend sometime reading so I feel better informed x
Try not to worry. This is a great site, and you have already got good advice above . What Eileen USA says is spot on, check out the PBC Foundation site, and join (it's free) and talk to their advisors and do read the info she suggests, as that is the latest update on how all Medics should diagnose and treat PBC.
For example, check that you have been given the right dose of Urso for your weight, and also ask the PBC F about the issue of 'generic' Urso compared to the main type, as some people don't take well to the fillers in some of the generic types and others have said the dose needs to be slightly higher with some of the generics - but don't alter the dose yourself. Get your own doctor to check all this, but do try to check the PBC F site so you feel well informed.
Finally, if you want to see another consultant, perhaps an actual PBC specialist, you can do. I live in Devon UK, and didn't accept what the liver person I had seen said, so in the end I saw one of the main PBC specialists.
Take care, and don't stress, as it's the worst for all autoimmine conditions. The best thing is having fun, doing things you love, relaxing, having a good life (while exercising, having a healthy diet and avoiding alcohol etc) and generally not letting this pesky condition rule you. You will be fine.
Well it's interesting to read what you all do :), I guess vitamin is something il be given in time
Can I just ask do these pills make you feel better, I get they prevent more damage but every thing I read says you need different medicines for different symptoms so I just want to know if any one generally feels anything once your on theses pills
Ann
It is important that you get enough vitamin D & calcium for your bones. I understand that lack of D makes you tired.
My doctor always checks my D levels on blood work. That was how I knew I didn't have enough.
it is important to get your vitamin levels checked.... B, C, D, E, calcium If your levels are good, there is no need to take more. If your body doesn't need the extra vitamin, you will just pee it out. Have your levels checked if you aren't sure. If you do take any over the counter supplements, make sure your doctor knows. Some do not mix well with some medications.
Just been diagnosed 
Just diagnosed with PBC
Just diagnosed with PBC
