Not on treatment for PBC

Hi I was diagnosed with PBC six months ago I had been unwell for months but I also suffer from Ulcerative Colitis and Entropathic Arthritis for 10 years. I haven't found the right treatment for my UC as I have had reactions to basically all meds I've been put on. I'm starting a new drug vedaluzimab so I am hoping to get some relief. My Drs haven't given me Urso for my PBC they are treating the itch, but I'm concerned, I want to do all I can to slow down progression. I have had such a hard time I have lost faith in my Drs. Is there a stage on which you should start Urso? I suffer from itching and chronic fatigue which I can't cope with! I'm exhausted constantly. I think I should be put on Urso I just don't know why I'm not.

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  • Hi beverycareful, I believe Urso is best started in the early stage of PBC, but in saying that perhaps your dr feels it's best to deal with one thing at a time, so that you are pain fee and comfortable. If you're lost confidence ask your GP for a another referral to a new consultant. Be brave and don't be fobbed off. Fatigue is horrible, I'm lucky as I have no itch, but I find the fatigue very limiting. I have about half a day where I can do things the other half is resting for the next day. I hear there are creams you can try for the itching and you may be a one of the lucky ones where they work. Do go and see your GP. As for a double appointment and ask for true care, advise and help, take a list of questions so you don't forget . I truely wish you the strength to push and to be heard,, x

  • Hi and thank you for the reply. I have asked today to begin Urso. My Dr has been very nonchalant regarding PBC, almost as if it was nothing in comparison to my other diseases but to me this is the most disturbing. I haven't see a consultant it was one of my other consultants that spotted it because I took toxic hepatitis from medications. My GP has actually shrugged it off! I will push forward. Thanks for the advice :)

  • Good, I do think you should demand to see a PBC specialist. I have latent TB and the medication for that is toxic to the liver, so now my lung consultant check with liver people if needed. So you need someone with good liver knowledge to guide what medication you take concerning your other diseases. I'm no expert, I too have different disease so I think it's important that each specialist is aware of your full history. PBC is slow developing and can easily be brushed off, but it's a part of your medical history that must be accounted for. Best x

  • Hi Beeverycareful

    From what I understand URSO is thought to slow down the progression of PBC especially when caught in the early stages. Are you in the UK? I know there is a casual attitude to PBC from certain quarters of the medical profession and therefore you should be under the care of a specialist in hepatology. If you are in the UK ask your GP for a referral. If he refuses you can take the matter further. Perhaps Patient Advice and Liaison (PALS) in your local area can help with this. Having said this the worst enemy of PBC is stress and fighting for rights is always stressful.

    I see now from a later post that you have been put on URSO so I hope you get on okay. It is still worth trying to get into the liver clinic at your local hospital at least you will be on the list. Let us know how you get on.

    best wishes

  • Hi no I haven't been put on it yet I have put in a request. I am in Northern Ireland and i believe there is a very casual attitude about this disease as they seem to believe that because it progresses slowly it's not worth treating. I have already paid an immunologist because I have 3 autoimmune diseases and I never saw one. I will definitely push for this as it is my right. It's my body and I should not be fobbed off. I just think mayb because I've been so sick with my other illness mayb they are concentrating on them first.. I appreciate you replying thanks😄

  • It depends why the non-hepatology consultants think you have PBC. What exactly are their diagnostic criteria - eg, the presence of AMAs, and abnormal liver function tests?? You need to get copies of all printouts of results and letters - in UK under NHS it is your 'right', though you may have to pay. The symptoms you describe are similar to those experienced by a friend with UC, indeed fatigue seems to be common to most autoimmune conditions.

    However, I agree with others, above, that you should see a liver consultant: preferably someone who is a PBC specialist. Again, if you are UK and NHS, then you can see another doctor in the practice and ask for this - you also have the right to see a better consultant outside your immediate area if you are not happy with local specialists - a lot of PBC people seem to get sent to general gastroenterologists, when they really should see hepatologists.

    Hope this helps.

  • Hi thanks for replying :) I've got copies of my results already I had been having abnormal liver functions for over a year since I took hepatitis and there was the presence of amas, I paid to see an immunologist to have my antibodies checked etc and she confirmed the diagnoses as did my consultant! I've had ulcerative colitis for years and I wasn't affected by fatigue thankfully but. now this is unbearable I've been put on two different medications for the itch but it's bad still. I will def ask for referral. Thank you all the the advice.

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