Feeling Unloved!!!

Was dx about 18 months ago! Have just left my GP having been told I probably don't need 6 monthly blood test to check my liver function any longer, probably don't need to see my hospital consultant every 6 months and can probably stop taking the urso now!!!! At this I asked her if she knew anything about PBC...she readily admitted she didn't know much and that I was her only patient with it! Doesn't give you much faith does it!! 😕

18 Replies

  • Go see a hepatologist. That doesn't sound right. Sorry to hear. Hope all goes well.

  • I was told Urso is for life

  • I didn't think so either! It flies in the face of everything I've learned about PBC. I was just a little upset this morning that I apparently know my own condition better than my GP...made it feel insignificant when for me my dx was a life changer! Never mind! I will continue to see the Gastro Con. I've been seeing since dx unless HE tells me that such regular blood tests and follow ups are no longer necessary. I will continue to take the Urso as I was also told by my Consultant that this medication is for life! I told my GP as much! I just needed to hear from someone on the same page as me if you know what I mean so thanks for your reply 😊

  • Hi there, have a read of my reply to Jennyhadenough below, my reply to her was in fact meant for you! Got a bit click happy!

  • Hi Milo2

    Are you a member of the pbc foundation? If not it might be a good idea to join - it's free and you will receive a booklet that you can give to your gp. At least then they will know the importance of taking urso and having regular check ups.

  • Yes I am a member of the PBC foundation. Next time I see my GP I will give my her the booklet! Thanks for your advice 😊

  • There isn't a cure for PBC, you must keep track of your blood work. I've never heard of such a thing. Yes, the Urso is taken for life & if not this disease will progress faster than normal. I was diagnosed in 2012 & started on Urso with frequent blood work & visits with a gastroenterologist. I was at stage 2/3 when I lost my insurance. So I couldn't afford the Urso for about 18 months. I went back on the medication as soon as my insurance was fixed. Because of this, my heptologist feels that the progression from stage 2/3 to stage 4 with cirrhosis & varicies is due to not taking the Urso or keeping track of my blood work for so long. It caused my progression to travel faster than most. Im only 43. Please find yourself a heptologist. They are very educated in PBC.

  • I'm not sure regarding PBC and if it will 'progress faster' without taking the urso. Back in 2010 I started itching early on in the year. By December I was diagnosed with PBC and started taking urso.

    I asked for my blood results throughout 2010 and my GP took my last ones August 2010 and it was start of November 2010 I saw a hospital consultant for the first time. He took bloods that morning as well as antibodies. I noticed on looking at my bloods that between the ones my GP took in the August, there was a significant drop up to seeing the hospital consultant and having them taken - these were the ones that were higher than nrmal range or elevated as some dfescribe. This was without any medications so it left me wondering after being diagnosed.

    However I think once we are taking the urso I do think we should continue to take it regardless. We're not expected to have normal blood work though some do regain normal range on the urso (I haven't). I know I couldn't say for certain if I stopped taking the urso my PBC would halt (which I do think possible but no guarantee it will remain that way) and I wouldn't even take myself off them now to see.

  • Peridot

    I do feel, in my case anyways, that my progression from stage 2/3-stage 4 had a lot to do with not being on the Urso & seeing my GI on a regular basis. When I started back my numbers were really crazy. My heptologist feels that this had a lot to do with it. Maybe not the entire reason for the fast progression. I too had the itch before I was diagnosed & feel that I've had this for some time before actual diagnosis. Reasoning for being at stage 2 when actually diagnosed. I've had digestive issues my entire adult life. I had my gallbladder out at 19 then in & out of the hospital ever since. I hope this made some sense😳

  • Hi there, I knew my GP wasn't right. I was just a bit shocked at her apparent lack of knowledge about something that is so important to me! Hence my post title 'feeling unloved'! I just needed to share my thoughts with people in the know! Thanks for taking the time to reply 😊

  • This is why we're here Milo2. To help each other when there seems to be no one😌

  • Hello Milo, I think you should insist on seeing a hepatologist regularly, even if all your blood tests are good now they need to be monitored by someone who knows about the condition.I was also told I will be on Urso for life.Jane

  • Hello jane1964, I see a Gastro Consultant at the moment. I have been quite happy with the advice I've had from him up to now. I was just quite shocked at how little my GP knows about PBC! I know GP stands for General practitioner but still....thanks for taking the time to reply! 😊

  • It is worrying when you have a GP who knows nothing about PBC. Mine openly admitted to me he didn't know anything about it.

    It makes getting answers to anything PBC related harder especially between consultant appointments, but I was glad he told me at least I know not to listen to his waffle.

    I have him check with the consultant now if I feel something is PBC related.

    Ive always had annual visits to the consultant with 6 monthly bloods, which goes back to the consultant , who agreed if anything further was needed she would write to the GP or book an appointment for me.

    So it's possible to get everything covered just rather annoying that the care plan doesn't appear to be as seamless as it should be.

    I would let your consultant know how you feel so that you can be reassured.

  • I will...thank you 😊

  • Oh my gosh... please don't do any of that... pbc is never cured so yes u need blood tests and urso and a new doc.... congrats though on good lab work

  • Hi there Pamela4475, don't worry I did put her right! I will make it my mission to educate her about PBC! And yes so far so good with the blood test results...long may that contine! Thanks for your reply 😊

  • Good luck Milo2 ❤️

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