Newly diagnosed...slow start to treatment

[JenniferTh]

Was diagnosed in October by private consultant following liver biopsy and 3 years of elevated LFT's with no conclusive diagnosis. Had a call from the private consultant on 26th October and h has referred me back to the NHS consultant who did the biopsy for treatment with urso. So far have heard nothing - has anyone had experience of how long it takes to get from diagnosis to start of treatment. Anxious to get started as I am conscious that PBC may have already been present for several years but everything seems so slow!

[Dese]

Hi Jennifer I was put on my tablets before my biopsy because of my blood results I didn’t have to wait at all that was 2013. Maybe you should get a doctors appointment. Good luck x

[Skypony]

Hi JenniferTh, sorry you’ve joined our merry band but there’s lots of wonderful support here and from PBC Foundation.

Your GP can prescribe Urso if they’ve received confirmation of your diagnosis. I asked mine to do this and there was no problem with it because it’s standard NHS protocol. Understandable you’d want to start Urso asap, but don’t worry if you don’t succeed in speeding this up. PBC is a slow burn disease and in most cases a few months won’t make a difference. I went untreated for around 10 yrs and still have low level disease!

Best wishes

[butterflyEi]

I was diagnosed 2006 but had presented with symptoms about 10 years prior after so long I would say I am one of the luckier ones where my numbers are now good and the delay in diagnosis and treatment has not negatively impacted upon me. As others have said it is a good course of action to see your GP and ask for ursodeoxycholic prescription. Take your specialist letter with you. Liver department s are under a lot of pressure and this may be a way to short circuit the wait for treatment.

[JenniferTh]

Hi Everyone - thank you for taking the time to reply to me and your comments are very reassuring. I will contact my GP and see if I can get them to prescribe urso to save waiting any longer.

[liver-bird]

My GP found high lfts from blood test and referred me to hepatologist. However 54 day wait and I was losing sleep with worry. So I paid to see a private consultant who diagnosed me based on blood test and immediately started me on Urso. He saw me again to make sure I was an Urso responder and then referred me back to GP. I have never had biopsy.

[gailann59]

First and foremost, always be your own best advocate for your health and well being. I have taken URSO for the last 8 years, except for when I could not afford. It is saving my diagnosis and keeping my PBC at bay. Do I like it, oh no, however the only resolve for this auto immune chronic illness. Much fatigue, anxiety, depression, and 'the itch' are my side bars as I describe them. Am 60, on disability for severe anxiety, alone(well never really alone--Faith and my circle of compassion and support). Peace be with ...

[JenniferTh]

Thank you for sharing your experiences with me. I have made a GP appt to get a prescription - earliest they could offer in three weeks time. Think I will feel better even if I have side effects knowing that I'm doing something to slow the PBC down.

[billhunter]

Sorry for delay but updates slow. If you have pbc your gp should act immediately with urso. 13-15mg per kg per day. It is the standard treatment everyone has. Hopefully it will work without considering other drugs. You must ask for immediate appointment. William