p.b.c

Im a little confused.I have been diagnosed with p.b.c with a positive ama of 1:640.On seeing my consultant for the first time he has informed me that the drug UDCA has shown evidence of not been effective in treating pbc and therefore he is not going to start me on the drug,saying he believes it is only beneficial in the last stage? He has sent me for more blood tests, a L.F test and a hepatitis b test (my last LF test showed border line positive) Could anyone also tell me why i am been tested for hepatitis b? I get those results in 2 days I am to also have a ultrasound scan in 5 weeks. I have only been diagnosed 6 weeks ago with p.b.c Thanks

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  • I've been on ursodiol for 13yrs since my PBC diagnosis, I had the disease probably for 10 yrs prior to this. I had rather have know about the PBC earlier, and been started on ursodiol sooner, for I've done very well because of it, I think.

    Magnolia

  • Thank you very much for your reply :) I was hoping that i would be started on the drug now,as i have definately been diagnosed with p.b.c.I am going to re discuss this when i see my consultant next. Thanks again

  • Read on a comment somewhere but can't now see where (!) that the consultant might not be more in the know about PBC (just seen it, healthangel's comment).

    The one I did see as arrogant as he was in 2010 (at aged 46 I came out of the room thinking I was retired and past it and boy did I feel like i had aged tremendously that day), he did actually seem to know a lot about PBC. He did say that he was giving courses to GPs on PBC as a lot didn't know much or anything about it at all.

    I had to see GP Mon gone and again another useless one in this practice of 6 GPs. I've only seen the one I was registered under over 2 yrs ago now as he gets the blood results back but Mon I had to see another in practice as couldn't get an appt with him. (I was glad of before I went, thought I'd get an improvement on him but....!) This female GP didn't even know about PBC!!!! But I got the feeling she was willing to look it up later on. No idea where the PBC Foundation GP leaflet is that I took in to surgery before Christmas 2012.

  • Ive personally messaged you back x

  • Hi there i would get a second opinion as all the information I have read contradicts what he is saying I've read it isn't effective in later stages as damage already has been done I've been studying pbc for two years since my diagnosis and I have to say its the first I've heard please get another opionion as for the blood tests I was sent for all tests like hepatitis I think it's just routine the ultrasound is to rule out blockages in the liver but as you have positive AMA its highly likely that you have pbc hope this helps take care x

  • Thankyou so much for your reply I am actually smiling that i have gotten a reply,as i feel alone in all of this :( I have also been doing research on this and i too agree with what you are saying. How can the drug be effective in the last stage! I feel as though ive just been left, without any treatment been given, for the p.b.c to take its course. I will await the blood results and my ultrasound then readdress my concerns to the consultant. Thanks again

  • I would wonder just how much information this Consultant has about PBC. Although Urso, does not cure PBC, it does manage to slow down the progression of the disease. I would ask this Consultant if he is aware of the foundation, if he isn't I would come prepared with the pamphlet for Medical professionals that the foundation provides. Get a second opinion or change doctors. I am on Urso and milk thistle for the last ten months. I was put on them immediately by my Doctor. Good luck and you came to right place by being here. We support, inform and listen on this forum. You will never be alone now that you are on this forum. I get an ultrasound done every six months and comprehensive bloods every three months. take care, Judi

  • Thanks for your reply,its nice to know il get support on here.Its what i need at the moment! Well ive already got a great big book from the p.b.c foundation and i went armed with questions and statements from this to my consultant but every time i tried to question things the only response i got was "We need to slow things right down"!! One step at a time"! Though he seems to be doing no steps in my opinion ...When i next see him i will push for treatment or change consultants.Again many thanks

  • Sorry its Cass by the way!

  • Hi Cass welcome to the forum. You are certainly not alone. I totally agree with the others re getting a second opinion PBC is not very well known about by lot of professionals. I was diagnosed 12yrs ago and was started on Urso right away. I went off it last yr because of intractible itch and sadly since then my LFTs are not so good. I asked about going back on it but was told may only slow progression down by a year or two but this is ME personally I feel and may be that I am heading towards end stages of the disease so it may not be as effective for ME. I am currrently waiting to discuss all this with my GP next week and intend to update via Blog when I do so. Important thing to remember is this is a SLOW progressive disease and differs from person to person and many people die WITH PBC not FROM it. Good luck with appointment.

  • Thank you for your kind reply. I am sorry to hear you maybe heading towards the last stage :( and i hope that your GP may re consider putting you back on the URSO,every single year counts.Its really strange that my consultant seems to believe that this drug is only given in the last stage when clearly .,as others have said,it would not be effective at all by then.Please let me no how your appointment goes. Good luck and best wishes. Cass

  • Hi there,I would agree with the other comments on here.When I was considering starting urso a few years ago,my consultant said that the urso slows down the progression of the disease. It may be worth asking

    your GP to refer you to a different Consultant for a second opinion.Most hospitals have more that one consultant ,I'm at SJUH in Leeds and I think they have 3 Consultants that specialize in Liver disease.

  • Thanks for that. I knew that the drug slowed down the progression and thats why i was keen to start the treatment asap,but my consultant has different views obviously! I was a smoker and have been for over 20 years (15 a day) and have now been a non smoker for 5 weeks :) as i have been informed that this can speed the progression up,so i now need the Doctor to do his bit to help also!

  • Hi Cass, I was diagnosed last year, I live in Basingstoke, Hampshire, and my consultant is one of the leading men in liver diseases, and teaches at The King's College Hospital. He started me on URSO once he done my liver biopsy, I'm in the late stage of PBC and my consultant has told me once the time comes that I start to go into liver failure, he will put me onto he transplant list. I have had other medical conditions/health problems for over 6 years, and was told this is very common that PBC is usually diagnosed whilst having tests for current medical conditions. I agree with everyone that has said to ask for a second opinion, or a different consultant. But when you see your current consultant again, be assertive and don't let him fob you off, demand he answer your questions, and tell him about the research you have done for yourself. I am very lucky that my mum has read up on PBC and comes with me to every hospital appointment I have, even though I'm 43, and she asks questions I don't even think about, and because of this I feel that I'm in control and fully understand my condition. I hope that this helps, and keep coming on this site as you do get a lot out of it and everyone is great. Lynne x

  • Hi Lynne I also live in basingstoke. I went to see dr ramage last week at basingstoke. He said I think you've got PBC, go and have some blood tests and make an appointment for 3 months time. He didn't tell me what PBC was. When I got home I looked it up on the Internet and was so frightened. Is this how you started? How did you get to have a consultant at kings college hospital ? What do you think I should do next? With love sue x

  • Thanks Lynne.My Mum did come with me and for that im grateful :) Im sorry to hear you are in the late stages and hope you are still having more good than bad days. Take care x

  • I was diagnosed withe end stage PBC 10 years ago and was put on urso straight away but it had no effect. In 2004 I had a liver transplant and 2 years later PBC was found in my new liver. I was put back on urso and so far my liver function has not altered. At least for me taking urso didn't work at end stage but was completely successful in the beginning. As suggested by several people I suggest that you try to change consultants.

  • Thank you for your reply x

  • Hi Cass, I would push for a different consultant ... he sounds like a real jerk. Different people respond to URSO in different ways so you should at least have the opportunity to try it. Your bloods can be monitored and any differences noted. Tell them you want it. I'm not sure, but I don't think it is an expensive drug to issue! Don't stress too much about a delay though, I had PBC for nearly 20 years without being diagnosed and without URSO and I am still in very early stages. By the way, this is the first time I have noticed there are different sections to go on, questions, blogs etc. Thanks for pointing that out to me. I am so dippy ;)

  • H aha ha your welcome! Im just nosey hence finding my way round! Thanks for your advice and il stay calm!

  • I started with blood tests after seeing the GP with the itch and also feeling so fatigued at the time in 2010.

    Repeat bloods in a short time showed the LFTs to be climbing. I had other blood tests to rule this and that out (one was to decide if it was bone or liver related) and then the GP said he wanted to send me for a scan.

    The scan showed up pretty much normal but the LFTs kept on climbing slowly with each repeat blood. After more blood tests for other things (one was copper, Wilson's Disease) he decided to refer me to the hospital.

    When I finally saw the consultant 3 months after being referred, he said the bloods showed my liver was just 'a bit inflamed' and that day he was going to do the AMA test. I thought I had already had that at GP surgery and had hoped would get results from that that day at the hospital but had a further 2 months to wait for PBC diagnose.

    I was started on urso (or UCDA as you call it. It is apparently referred to as 'urso' these days, that is what I got told by doctors) just after the GP received the diagnose from the hospital doctor.

    I have read that urso isn't known how it works but it adds more bile to our system which in turn then helps further with digestion as the bile ducts in PBC are being damaged due to the anitbodies we are producing. With an improved bile flow the liver is not as stressed so it has time to start rebuilding itself providing the PBC isn't at a very bad stage.

    I have read PBC is best treated at the start of progression as opposed to the latter stages when it isn't normally prescribed.

    In your case and if you can arm yourself with some information on PBC as in contact the PBC Foundation who will send out the leaflets for you to take with you. One is for GPs and that is more in-depth than the patient one but I'd go with both. (I actually took one of the GP ones to my GP surgery. Not sure if it was read but I know they have it.)

    I'd ask for a second opinion myself if you are not happy with what treatment you are currently receiving. There could be a bit of doubt at present but for you it seems that your experience of all this has been a bit more complex than mine. I thought mine was a shambles as in the length of time between being referred to an NHS hosp doctor to actually seeing him and then having the AMA done that day when I would have expected the blood test could have been undertaken at my GP surgery prior, but it now seems pretty straight-forward.

    I had Hepatitis blood tests early on after starting with the itch due to the nature of my work though I did have the Hep jabs when I started on the particular job.

    Hope you get an answer sooner rather than later. I can't recommend anything in a medical capacity obviously but I take milk thistle myself as well as the urso daily. I've had good liver function test results from this.

  • Thanks for your advice and i have got a information pack from PBC foundation so next time i will go armed with it!

  • Hi Cass and all.

    I'm in my ninth year with PBC I take 4 urso at night was supposed to be staggered throughout the day but kept forgetting (must be an age thing) so was told its ok to take them altogether at night. According to the Prof I see at the Freeman Hospital in Newcastle this drug does slow down this dreadful desease, I like all of you think that you should demand a second opinion and try to change your consultant. Since being referred to Newcastle (I live on the outskirts of Leeds) and to a fantastic Prof I have been more positive and even hopeful that there is going to be something out there that will aleviate my itch which has gradually got worse over the years and is now more or less constant.

    The Prof was the one who told me about this forum and for that I will be eternally greatful it is absolutely fantastic knowing there are others out there that know what I'm talking about when I mention the itch, I have a very supportive partner and family but they don't understand like you all do and to come on here and even just have a rant or just a read is a lifeline for me.

    Sorry to waffle on but I think you will all understand where I'm coming from.

    Good luck Cass keep your chin up we are all here if you need us.

    Debs.x

  • H i ,i agree i think it is difficult for family to fully understand where we are coming from. You sound to be getting great support of your Prof,pleased for you. I am going armed with info from PBC foundation the next time i go to see my consultant! .Thanks

  • Hi Shakira10. I think the AMA positive means that it's highly likely that you do have PBC. Perhaps your LFTs are not elevated yet and your consultant is saying that there will be no benefit in taking Urso while your LFTs are normal, which is correct. Once your LFTs (liver function test which checks your liver enzyme levels in your blood) begin to rise, Urso is the main drug used to bring them back down which slows liver damage and does work for most people. Could your consultant have suggested that you have auto-immune hepititis rather than HepB? PBC and auto-immune hepitis are often found together. Although before I was diagnosed with PBC (I am AMA negative) I was tested for Hep D for some bizarre reason!

  • Hia no he definitely said Hepatitis B. Maybe as you have said that is why im not on the Urso as of yet. I know my LFT in January were borderline elevated and im now awaiting my Hepatitis B and LFT results from 25 th March,which i should be getting any day now.Thanks for advice

  • Hi Cass

    I agree that Urso is very beneficial to PBC, I have crossover AIH, but because of my blood tests show strongly that I have PBC and with taking Urso my blood tests have become better, my consultant is just treating the PBC. I have a negative AMA as well. I was diagnosed 7 years ago a few years after I had my first child. What symptoms do you have? I have the fatigue, itching and bone/muscle pain.

  • Hia well i have a positive AMA with a titre of 1:640,not 100% sure what it means except that it is very high ,and this alone has determined PBC. I have the muscle/joint pain in my hands,and wrists,a little itching now and again (mainly on my feet) and the awful fatigue which i hate!! As it happens im having not the best of days,so exhausted have spent the day in bed. This has all derived from myself complaining of joint pains and fatigue which resulted in a short stay in hospital as they didnt no what was the matter with me. Still dont understand why im not on the URSO like your self. Confused.com!!! Hope you are well today :)

  • Hi cass. I have just recently been diagnosed with pbc February 15th so stll early days but I have been started on URSO and now in week 3 . My AMA came back as positive all my hep results came back as negative my LFT'S are high so hence on the tablets. I feel really good and dare I say the terrible itch has lessened. That in itself is a bonus . I have asked to he referred to kings college in london and awaiting appt to come thru. I would definitely ask to have second opinion and remember "Patient Choice" . I work for the nhs so I know alot about our choice for our own care. So be positive strong but most of all live life to the max. Take care and have a good day x

  • Thanks for your information :)

  • Hi Cass,

    I was diagnosed at the age of 24 which is 9 years ago.

    I had routen blood test done due to joint pain and they found the AMA antibody in my system, as it stand to this day my LFT's has not changed but the AMA is still there, I have not been put on Urso, I have just seen my consultant for my check up and he said I do not need to be put on the medication, he does not feel I will denifit from it as yet, he also said that it isn't down to cost as it is a cheep drug. I asked him then do I have PBC? As we are just going off the AMA, he said yes I do have it but not to worry as I am in the best hands. Easy for someone to say that when it isn't them that worries about it day in and out.

    However I am taking it as a positive and as long as these bloods are ok then I will see him next year. He wants me to have a scan next year which my last one was 4 years ago.

    Hope you all have a lovely Easter, take care

    Xx

  • Thanks for your reply. Your situation is exactly the same as mine with regards to the drug not been given and the positive AMA determining my diagnosis of PBC. It seems strange to me not been given treatment but kinda of relieved its not just me!! :) I go in 4 weeks for my scan and am awaiting LFT results and hepatitis B results to come back. Hope this finds you well . Cass

  • When my LFT's became high my primary brought in a GI consult. He told me I had PBC, (pos. AMA) . Said there was only one drug to take and he did not feel it did anything. His response to my question re prognosis was to say that if I were younger it would be a problem but at my age it was not.

    Very offensive and caused me to drop out of medical management as they also wanted me to have a liver biopsy to confirm their diagnosis.

    I have now started on URSO after seeing a liver specialist and I wish I had seen someone sooner.......but I had a worry free decade or so..but as LFT's were elevated it would have been smart not to get offended and research "the one drug" and perhas slowed things down. Ahh hindsight!

    I will have to ask my doc re not needing URSO til LFT's elevated. It strikes me that it may be a correct protocol, but I would not accept it until I had done the research, confirmed with a second opinion, etc.

    Carry on and let us know,

    H in NJ

  • Thank you for your concern and information.

  • Maryelizabeth, I've tried to send you a message but it won't seem to go through, I'd love to meet up with you and have a chat, could you try messaging me with a phone number and I will ring you to arrange meeting up

    Lynne xxx

  • Il try now to personally message you xxx

  • Done it ! :) xx

  • Ha ha ha ive just realised this message was not for me!Doah!!! I did think oooh thats a long way to meet up for a chat!! lol Well my number has been sent so maybe we could drop one another a text sometime :) x

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