Diagnosed with pbc last week, after 3yrs of chronic muscle pain,

[Sonia40]

My neurologist new about this 3 yrs ago too and didnt react on it, my gp has since put this on my medical records, seeing specialist next week, can anyone tell me what to expect please? I have slight itching, chronic muscle pain in my arms and legs and fatigue thanks,

[sandarella]

Hi I have had pbc for three years. I also have the itch on my back and toes at night but find e4 cream for itch very good. I used to have lots of muscle pain but since taking seven seas duplex supplements it has cleared up. Do suffer fatigue from time to time. Need to balance time out.

[Hidden]

Hello Sonia40.

Does that mean your neurologist did blood tests 3yrs ago and you had abnormal LFTs? Have you had the AMA blood test yet as that is normally how PBC can be diagnosed as a first test following abnormal LFTs.

I visited the GP early 2010 with itching and at the time fatigue (that has long since left me). I had a scan several monthts later then after the GP said he had exhausted what blood tests he could, he referred me to the hospital. I had the AMA taken there on my first consultation. By Dec 2010 I had been diagnosed with PBC and started on urso.

My hospital visit was more shuffling about from this room to that room. I started off seeing a nurse who took a urine sample I had taken in from me (no idea results of that, no-one ever said and must have been ok or I would probably have been informed), she weighed me and took my blood pressure. Then I sat back in the Waiting Room and then was called by the doctor. The doctor checked my hands, feet and looked at my eyes. Asked plenty of questions, meds (was on none at the time), lifestyle, etc and then he said the scan I had on my liver and surrounding organs showed up basically normal but the bloods had showed slight inflammation of the liver.

He said he would take a special blood test that day to check for antibodies so I said was it for PBC. (I had stumbled across this several months prior myself.) He said yes that was one but also he was doing the ANA blood test too as abnormal LFTs and also itching and/or fatigue can point to something else liver-related. I had the blood tests done and then waited for about 6/7wks until the GP's receptionist rang me up and ask me to go in and see the GP, he wanted to give me medication. I asked what meds and she said the urso so I knew myself before going in what the GP would tell me. My husband insisted on an appt that evening as opposed to later the following wk that I was to be given.

Joint pain can be part of PBC but for me at present I'm doing pretty good there, nothing to really think about. I did have a Vit D check 2010 and it was said to be on the line (I have the result of that) and was advised to utilise the sun to hopefully bring levels back to normal. I had recheck 2011 and the Vit D level was within normal range. Vit D is required for bone health and best way is the outdoor sun.

I made a few changes to my lifestyle just before diagnose and even though I thought I was eating healthy I made a few more changes and I'd say before the end of 2011 the fatigue had long since gone. I do itch at night unfortunately (for me and everyone else in the same boat here) but for now that is all that I have that I know I have PBC. My bloods started to decrease over time and they are said to be within a normal range for one with PBC at present.

If you have started on urso as you wuld with PBC and being symptomatic as you said you are then over time you should start to feel that bit better. Unfortunately urso isn't the answer for the symptons of PBC but for me I did see an improvement in the itching even if it's not gone away. I am not so sure about fatigue myself, hit and miss really and I think I'm quite fortunate.

I get up early morning and am usually on the go all the day until around 9p.m. where I try to watch a film on tv/dvd and then by midnight I retire to bed and I do seem to manage to get some sleep. I do occasionally wake up and if I am on a bad night with the itch struggle to return to sleep which then has that knock-on effect following day when I feel tired around 3p.m.

Please keep us posted.

[melbourne]

Sorry to hear... but did u have raised LFT's for 3 years or just AMA?

[littlemo]

Hi welcome to the site. You are not alone I have had PBC for 12yrs so life goes on I have never let this disease stop me doing what I want or need to do. There are good days and bad but overall it is important to remember PBC is a SLOW progressive disease and most people die with PBC ( i.e. with/from some other condition) than from PBC. I would advise you to take someone with you to apt 4 ears better than 2 and write down any questions that you have and take this in with you to the apt. Consultant will usually just ask you about your medical history and in particular what your current symptoms are and he/she may examine your abdomen around the liver region and you will probably have to have some blood tests done. He/she will usually explain to you about the disease and what your follow up care will be. Try not to worry you will be in good hands. Best of luck let us know how you get on. Bfn.

[Sonia40]

Hi, thank you all for such kind words, its nice to see im not alone, ill be seeing specialist on Thursday so i will let you all know the outcome. Thank you again , xx