Should I be taking medication to slow down progress?

[Elanie]

Hi just had my second appointment with consultant. I was diagnosed in 2017. I was told that my fibroscan showed some early fibrosis and a fatty liver. No prescription for medication , just more blood tests. I'm happy that I'm evidently at an early stage but I am concerned that I'm not having medication to slow down the progress of this.

[Ktltel]

Elaine,

Seven months ago this was a question asked of you by another member after your first post. Did you happen to follow through with finding this out? (see below)

7 months ago: Elaine,

Why didn't your doctor prescribe Ursodyoxycholine? Would you ask and let us know?

Today 3/15/18: I'm wondering the same thing because URSO, as you probably know, slows progression of PBC down. I realize it's only been 7 months but some women progress faster than others. If I were you, I would have started URSO 7 months ago. What are your doctors reasons for postponing getting you started?? How you feeling today?

Stella ❤

[Ballymahon2]

Do you have pbc

[gwillistexas]

I’m at an early stage also & have mild fibrosis but I was immediately put on meds. Don’t let that go...

[ninjagirlwebb]

If you have pbc, you should be on urso. The earlier you are on it, the better.

[Hidden]

Elaine I see your in the UK, so I would suggest you get in touch with the PBC foundation their link is at the top of the page, you can call them and they can give you advice and questions to ask your doctor. However, Yes the normal course of action is to start URSO as soon as possible, unless there is another medical reason for delaying it I would definitely be asking why you’ve not been prescribed it. I was given it 8 years ago and my latest fibroscan (last year) remains in the normal to mild range so I believe there are benefits to starting it early.

[GrittyReads]

I agree, wholeheartedly, with the above comments.

If you have definitely been diagnosed with PBC - according to the official diagnostic criteria - then 'yes' you should absolutely be on Urso, and should be having your bloods monitored regularly (eg: monthly, then 3-monthly, then less often if all well).

I would get copies of your exact diagnosis (exact readings of all blood/liver enzyme tests, etc) and any letters/forms from GP - although you should have been given your own copies) and run them past the advisors at the 'PBC Foundation' (link at top of page to their website), just to check that there is an absolute diagnosis of PBC. Mild fibrosis can be caused in other ways, and if it is not PBC then you don't need Urso, but you do need to follow this up.

Hope this helps, take care,

Gritty.

[Elanie]

Thank you for all your replies. I am going to make an appointment with my GP., ask for all my paper work and try to get this sorted. When I asked yesterday why I was not being prescribed medication the practitioner said that there was some studies which said it slows down progress whilst other studies said differently. he said I don't need it yet and that he was taking bloods to monitor. I'm not happy so will get my blood results from my GP and discuss it with him as he was the person who referred me to the consultant initially.

I am angry that although my appointment yesterday was for the consultants clinic it was a nurse practitioner who saw me. He couldn't answer my questions about whether my bowel issues were related to PBC and I felt fobbed off on the medication issue. I have asked if I definitely have PBC and have been told yes.

So feeling ok but aggrieved . Work is stressful and I get exceptionally tired but have chosen to retire in the summer. I'll let you know how I get on after I see my GP

[badpiglet]

Hi Elanie,

Reading the above along with what you said 7 months ago, you need to closely look at the wording your consultant has used in the reports they send to your GP. They may have verbally said you have PBC but it's the writing that counts. I agree with Gritty.

It sounds as if you are either asymptomatic PBC or that you are likely to get it at some point in the future but don't have it now. If it's the latter, you don't have a diagnosis of having PBC. For several reasons, including insurance, you don't want a firm diagnosis of having PBC. However you need to be very clear about the exact wording your consultant has used.

There are quite a few of us on this site that are positive for AMA M2 but have normal LFT's and don't have any PBC symptoms. We don't (yet) have a diagnosis for having PBC and therefore we have not been offered URSO. Most of us have annual blood tests to check the LFT's.

These hospital visits can be stressful because they never tell you quite what the procedure is but the following is common for us asymptomatic PBCers: Year 1 see a consultant, possibly with a 2nd visit to the consultant in the same year. Year 2 see a specialist liver nurse (that's good, frequently they know more than junior doctors!). Year 3 see a junior doctor (you will quite likely know more than him/her by this stage!). If after Year 3 your LFT's are still normal and you have no symptoms, you will get bounced back to your GP, so your annual blood check will be carried out at your local surgery.

The problem is they don't tell you that this is what's going to happen!

[Elanie in reply to badpiglet]

Thank you. I need to have a clear discussion with my GP and get my blood results printed.

[Andrei]

If i was u ....i would start urso now.

[Andrei]

I have not seen any studies in that urso is not good.It is also known that urso does not respond for 1 from 3 person as treatment but u need to try it.U will see if your blood results will be better.If so u will know in 3 months.Good luck

[ninjagirlwebb]

Print this out & give it to your GP. This will guide them for proper treatment for PBC.

easl.eu/medias/cpg/Primary%...

[Elanie in reply to ninjagirlwebb]

Thank you