My MD has never heard of PBC!

[PBCTracy]

I find it very strange my MD has never heard of PBC.My local Gastroenterologist is my only source of info.After my Upper Endoscopy he gave me my diagnosis last month and said I would be on meds forever.I then had a Liver Ultrasound at UTMC.Results were no scarring of any kind and it was caught early.I called my Gasroenterelogist's Nurse because of course I had questions.She said he has a couple of women paients with PBC.She said to do a daily exercise and diet plan.Watch your salt intake and no alcohol/pop.Only 2,000 mg of Tylenol a day.I was kinda expecting more info.Thank goodness I found this site!Do I need to find a Liver Specialist?

[Shulsey]

I have found that my heptologist is much more educated in PBC than my GI. If you can find one that's at a university hospital, that's even better! This site is a great source for information & support. Best wishes Tracy🙂

[Belliver]

Hi TraceyDepp, I strongly advise follow up with Hepatologist, your GI doctor will not mind at all, doesn't your GP have a computer to at least google PBC? BTW, did GI dr prescribe urso?

[PBCTracy in reply to Belliver]

Yes I started Urso a few weeks ago.

[PBCRobert Partner]

Hi, Tracy.

It's unfortunate but true that many GPs don't know much about PBC. That situation is improving. We have resources to help inform healthcare professionals.

In terms of care, there is no one specific answer that fits all. Your care pathway will be dictated by your PBC journey and your ability to ask the right questions. This is where organisations such as ours comes in to play.

I hope you have joined the Foundatuion and have started to take advantage of the free resources available to our registered service users.

Yours,

Robert.

[Rockie in reply to PBCRobert]

PBC Robert. Good day to you. I wish all your information could reach the doctors and specialists in South Africa as well. I find more information from our Group than I have ever found from any doctor. Discovery (my Medical Aid) rejects paying for Ursotan, but will pay for Liver Transplant, I am 76years old, and the medication is costly. Thanks for being there for us, much appreciated

[Biddyb]

Hi, I have been seeing a Gastroenerologist for about 6+ years and we were getting nowhere as he told me he suspected I had AIH overlap and put me on steroids, the next step he reduced the dosage and introduced Azothiaprine which didn't suit me at all I was really a lot for weeks couldn't go out due to D & Sickness stomach cramps which made me really weak. I came off them and we were then in stalemate as I refused to take anymore immunosuppressant medicine, I then asked my GP for a refusal to another hospital and to see a Hepatologist one of which was on the PBC board. I am still waiting to have the overlap confirmed the first thing the new consultant did was to,reduce the steroids and I have been off them since January, my liver readings are just holding in the acceptable level but do yo yo. Hopefully when I go in August to the hospital I will have good news, may well have been unnecessarily taken steroids for over 3 years by my old consultant not listening to me and treating me the same as his alcohol ic/drug taking patients. I am glad I asked to see someone else. If you are not getting the advice or you feel that you are not being listened to you have the right to seek an alternative. Write down all the questions you think of for your consultant not many GPs know about the condition so don't be surprised, stick with this site you will find a lot of help and advice. PBC foundation are really helpful too. Good luck