Urso

[Gillian61]

After taking urso for 6 weeks my levels are all normal, should I now stop taking urso and look closer at my immune system? I am still unsure my diagnosis of PBC was correct.

[kimphoebe]

Hi there

You should never stop taking meds without doctors advice and usually when on uso it's normally for life. Prob if you stop your bloods will go up again.

[Hidden]

Hello Gillian61.

Once you take urso unfortunately it is for life (unless something else comes along that we are advised to take. There's the new Ocaliva that is another med now used that has been developed in the last couple yrs).

Personally I don't think 'looking closer at the immune system' will cure PBC as it's not yet know what triggers it and also it's not fully understood as yet.

The urso adds further bile to the system and that is more than likely why your blood levels have returned to normal. You are probably early stage PBC and though you may remain like that as a lot do, without the urso your blood levels will more than likely start to go into disarray again.

My blood work wasn't exceptionally high when I was diagnosed with PBC late 2010 but they did start to drop drasticlaly at first and then slow down and around 2yrs later they were simply hovering. Mine have never returned to normal but I am still doing OK.

I still hate taking the urso as was never one for taking any medications whether it be prescribed or OTC. For me it is over time and how the itching has altered that I continue to take it as I do nto want to be like I was in 2010 or worse.

[55crousehouse in reply to Hidden]

What was your blood work numbers how high was alkaline phosphatase

[Belliver]

Hi Gillian61; please continue on urso until you have spoken with a liver specialist aka Hepatologist. A diagnosis of PBC is made based on more than one indicator in your blood work,etc. Nothing wrong with a second opinion--- be sure to ask why they say you have PBC--- write down the answers so you can do your own research, so that you can ask more questions on your next visit. If your LFT's have returned to normal after 6 weeks, that's great news! I agree with kimphoebe & Peridot as well.

I have been on urso for over 10 years now, my LFTs slightly above normal but there is always some slight fluctuations to normal on occasion, then back up slightly.

[GrittyReads]

I agree with everyone above: don't stop taking the Urso without medical advice. Some people find that as soon as they start taking Urso their bloods go back to normal, but PBC - if correctly diagnosed - is for life, and so is the Urso.

However, if you have any worries about your actual diagnosis, I would go back to your GP and go through what the consultants did, and did not, test for. You should have been given copies of all the tests, so ask for a copy. Also, you may want to talk to the advisors at the 'PBC Foundation' who host this site: link to website at top of page, with details of phone and email contacts. Also, if you check their site they recently produced a comprehensive summary of the newly agreed diagnostic details to be followed by all consultants when diagnosing PBC.

But read around, try to find out more, teach yourself all there is to know about your condtions ... but don't make any decisions, such as stopping the Urso, without checking with your Medics.

[Sachin1234]

This is the question you need to ask your dr wether u need to stop urso or keep continue! Urso works well to the pbcer so im thinking you have pbc.. think wisely before you stop urso so u won’t regret later in life 👍🏼

[Hidden in reply to Sachin1234]

Urso is also used for pregnant women who encounter itching with cholestatis. (I know a few young women who developed this and mentioned they were given it. They of course didn't know that I have PBC and take urso.)

By ocincidence my brother-in-law's wife was diagnosed with PSC and she started itching back in 2015 and she said at our mother-in-law's funeral that she had been prescribed urso. I hadn't heard of urso being given in PSC but she was.