When to take urso?

[janeliz]

One top specialist said to only take urso when the liver bloods go sky high ! Another specialist said to start taking urso when the bloods are slightly raised ........I don't have symptoms yet so not sure which Doc to believe . What do u think ?

[PBCRobert Partner]

Hi,

I don't know who your top specialist is or your consultant. You can't name them here but you can PM me if you would like to.

For me, personally, I would argue to take Urso as soon as there is a definite diagnosis. This comes from my experience of talking to and listening to our Medical Advisory Board.

Yours,

Robert.

[janeliz in reply to PBCRobert]

Thank you Robert . I will wait for results of a blood test .......as I was told blood results have to be raised twice in 6 months before starting urso . I don't have a specialist in UK but went along with my identical twin sister who has Bupa .

[Hidden]

Hello janeliz.

If you are in receipt of the latest Bear Facts magazine ( read it last night via email) then there is a page on urso and also in the Letters someone who has wrote in to the Foundation is having a bit of confliction over when to take urso too.

From the beginning of being diagnosed with PBC I was started on urso and my bloods have never been 'sky high' but abnormal from what I can see from others who occasionally post on here with certain readings.

Seems to be a lot of conflict in the medical profession as to when to actually start urso, when the bloods start to be abnormal or normal and been PBC diagnosed and also being asymptomatic can have some issue too it seems.

I find a lot of medical conditions can be so varied in how they are treat. I am in the UK and I think that the NHS should if they haven't set out distinct guidelines on how to progress with a patient who has certain criteria. I know I followed an NHS Pathway from the start of seeing my GP to diagnosis as I once found it online on an NHS site. Was basic and didn't go into too much detail but I seemed to follow all the Yes and No steps.

[janeliz]

Thanks peridot.....Will read it ! Just wondering......do liver bloods rise after taking antibiotics for an infection ?

[Hidden in reply to janeliz]

Hello janeliz.

Not sure on antibiotics and the liver function test (LFTs) perhaps rising after taking these for infection.

I know certain meds can but can't say there, you'd have to ask the doctor.

I think that if you were taking anything like that and it was noted when you had the LFTs done, it would be allowed for?

[Suziebeau]

My specialist put me on it straight away and told me to expect to be on it pretty much for ever. For the first few months I struggled with some of the side effects but one year on my bloods are all completely normal, my liver pain is gone and I have no itching or fatigue. I know that there is still disagreement about the long term efficacy, but i would fight to continue taking it if it was suggested I should stop!

[Juamcc in reply to Suziebeau]

I won't quit taking them either and I'm almost to normal. I'm so thankful for ursodiol!