Advice

[merrill16]

I was diagnosed with PBC September 2011, Not taking medication at the moment for it, but I know that my symptoms are getting worse. When I was under the care of a consultant, who now has referred me back to G.P. He contacted a consultant at theQEH, as I requested, after reading about studies/clincial trials, in the Bear Facts mag, who wrote back stating, 'generally speaking there are no clincial trials for patients with AMA findings without abnormal liver biochemistry...' What I would like to know who/or where in the Birmingham/West Midlands area can I go to get information/advice since they are no studies/trials, etc,.And speak face to face with someone who knows about PBC.

[janine1086]

i am currently seeing a gastroenterologist for my PBC at Good Hope Hospital in Sutton Coldfield an enquirey with them might help you

[merrill16 in reply to janine1086]

Thank you Janine, for the infor, will look into it.

[cowren]

Hi I've had PBC since 2011 I'm under a gastro consultant and just go every 6 months on urso and he increased it on my 3 visit and took bloods

I'm just waiting on a liver scan not much else to be done

I know its scary but I just try not to think about and still work full time

Fatigue is an issue but I just space my annual leave out so I can just shut down

I have other conditions as many others with PBC do and I find themire worrying.

Just ask go to refer you to gastro person

Hope you are ok sending you big hugs xx

[merrill16 in reply to cowren]

Hi Cowen, thank you for your post, hope it's okay to ask where your gastro consultant is based? I did'nt know my consultant had discharged me until I get his letter, than got it confimed with G.P!! Was not happy about that, but then again he was not great regarding PBC, (understatement). Not had scan, only bloods, urso only mentioned to me at last visit to G.P, and in consultant letter from QMH. Like you fatigue, and other conditions are a factor, which seems to confuse some of not most of the medical persons I have seen so far. Anyway...had my little rant, and moan, (sorry)!!!. Thank you again for reply, xx

[cowren in reply to merrill16]

Hi Merrill16 im in Newport south wales and I just see consultant at local hospital I have been told I shud be under a mire specialized consultant but haven't botherd as yet

I'm seeing a nuerologist who seems mire interested than the gastro guy and has just written to my Dr with a whole list of bloods I should have done !@

Never apologize for a rant or a moan if you check my other posts I'm just as bad that's what we are all here for XX

[EAJSWW]

Hi Merrill,

it is a scary time when getting diagnosed but many people are being discharged into the care of the GP if they are in very early stage PBC.

The thing is, symptoms such as fatigue etc are not always indicative of the disease process worsening. Many people who have fairly damaged livers have few symptoms and some who have little liver damage can be quite symtomatic.

I presume your specialist has asked your GP to take regular Liver function tests? These when taken over a period of time are a good indicator or how you are doing (not a one off test) As you say that you were told there were no trials for those without abnormal chemistry,I presume yours is normal? Thing is it could stay this way forever or for a long long time. BUT saying that if you are having symptoms these do need to be addressed. You don't say what your symptoms are? Fatigue is a common symptom, but presently there is no treatment for this, Fatigue has to be managed and can be done so with relative sucess. But it does mean lifestyle changes. The PBC foundation have some good information in how to manage and live with fatigue. itching is another common symptom and once again does not mean that your liver is packing up. Some have itching all the time with little or few changes in blood chemistry. Itching can be helped by certain medications with varying sucesses, and it would be your GP who could prescrbe medication for this.

You ask where you can go for advice? But to be honest the PBC foundation has some of the UKs Leading experts on board, they have the latest research and info to hand so they really are your best bet. Be very careful about going private as some have found they have trouble getting back into NHS treatment with the same consultant.

The problem in the UK is that although we have the NHS, more and more people each week are added to waiting lists, so specialists can really only see those who are actively in need to be seen by a specialist. Might be woth finding out from your GP if he can manage your symptoms and if not re referring you back to a consultant.

[merrill16 in reply to EAJSWW]

Hi eajsww, thank you for the response. Very intestesting points, e.g the GP referred me to the consultant at a private hospital , same consultant I saw for the 2nd time, on the NHS when he discharged from his care. The GP is as clueless as me, which he admitted about PBC. Free like I've been left to sort things out myself, infact I have. Not on landline, so tried to email the pbc foundation;[e-mail], email was repeatly sent back. Going to ask others questions regarding other symptoms i'm having, in the hope of getting more feedback concerning PBC. THANKS AGAIN.