I was diagnosed with PBC back in Dec 2015 due to elevated LFT's, raised GGT and AMA of 10.5. I started on URSO immediately and since I have also been taking a herbal tincture. For the last 6 months (2 tests) my bloods have been normal and last time my .AMA was 9. My GGT is still slightly above normal but reducing all the time and almost within the normal range.
My question is...is this the URSO (or herbal stuff) working...or is there a chance I don't have PBC. Also, can PBC be reversed if caught early enough as it seems I was luckily caught very early. I'm also wondering whether it's the URSO causing the itching I'm getting. I didn't suffer with it before I started on the mediction. I'm also wondering whether I need to take the urso anymore. I'm tempted to try 6 months without it and see what the next 6 month blood test shows?
Has anyone else had a similar experience?
I'm obviously delighted, but I can't say I feel any better in myself as I still have the odd spell of itching at night which leaves me very tired and I still feel more tired than I used to pre diagnosis.
I was diagnosed early with elevated AMA, AST, ALT, TBIL and DBIL but not ALP. I began cutting out preservatives and other toxins from diet and eating lots of oats with meals. My liver tests are normal and the itching is gone. I started Enbrel in Dec for AS and I'm hoping that it staves off PBC. 
Hello Hils67.
Well as I understand it, once you are diagnosed with PBC it's with you for life (unless a cure is found).
It might be in your case yours has halted as I believe it can do. Sounds like your was in the very early stages and your LFTs might continue to remain normal.
I originally started to itch early 2010 and that is how I was diagnosed with the PBC December 2010 and started the urso. I do however think that it can make the itch worse if you itch in the beginning and can also cause itching. If you read through the patient info leaflet that you might have got with the urso (if you got a generic - pharmacy labelled bottles - then they can print you the info out as they'll have got one of the leaflets with their large supply they bottled). I know I take Destolit and my leaflet states that one of the side-effects can be pruritis which is itching. My itch has altered since 2010, it's not as intense as it was and usually confined to night time so for me the urso has achieved that even if it's not brought my LFTs back to a normal range. (I do think that in early 2010 had I have been offered the urso my LFTs wouldn't have continued to climb for the 9mths they did before I was prescribed the urso but that is the NHS...)
Fatigue in PBC can continue, I was fortunate that in my case mine seemed to vanish in 2011. The urso can't resolve that issue like the itch if you have it is seems.
I think it can be hit and miss as to whether the urso can help as in the 2mths prior to me going to the hospital on my first visit back early November my LFTs actually dropped somewhat of their own accord so that is what gave me hope after diagnosis. they might not have returned to a normal range then but they did come down without any meds.
I doubt a doctor would advise you to come off the urso but it is your choice. Mine said in 2011 that if I thought the urso was making the itch worse as it did in the beginning then to come off and see if it was that. I never did of course.
In the early days I didn't do too well taking in the fact I was supposed to be taking the urso for life and on the rare down day where I didn't eat very much I noticed that without taking urso (as to me urso spells taking food due to it being a bile component) I hardly itched that night and also the following night I seemed itch free but then back to normal the day after due to having to eat of course.
Though I can't say what to do, I think if I was in your shoes and out of curiosity I might be tempted to stop taking the urso a wee while prior to the bloods being retaken and see what happens. I somehow think that 6mths could well be pushing it. I know the urso took several mths in my case before I didn't get a bit of tummy bloating and heartburn (never had pre-urso) and the itch to seem like it was going back to how it was in the start.
Be interested to know what you do. I sincerely hope that you continue to have the normal LFTs you have. It's reading these positive postings on here that I find gives us some hope.
Yes, I'm curious to see what would happen without the urso...I may do as you suggest and cut it out for just a short while before my next blood test...maybe 6 months is too long a spell...I don't want to do any damage as I might make things worse!
Little bit daunted by stopping medication...so I'll see how it goes, and I'll let you know xx
What is the herbal tincture you are taking? Very interested. I strongly believe in herbal suplente and I would not be surprised if it is the combo of the herbal stuff and Urso that has dropped your numbers.
Hi, the herbal tincture was made up for me by a herbalist friend and it is a mixture of various herbs including milk thistle and some other things to help me sleep. If you search on here for herbal tincture you'll find my earlier post which gives the breakdown..although as I said this was made up specially for me. I think some over the counter herbs can be quite weak and not very effective, raw herbs are best!!
My consultant has said I can give URSO 6 months break and that is what I am doing.