PBC Foundation
6,279 members5,557 posts

HELP could really do with some support and advice x

Dr told me a couple of weeks ago I have PBC and I am still waiting to be seen at the hospital. I have been started on Questran for the intense itching which I have been suffering with since last September which thank god is working as this symptom has been absolutely awful! I do however keep getting this rash on my arm which comes and goes has anyone else had this? I also have pain and weakness in my wrists and cant even carry an umbrella for more than a few minutes and suffer with Raynaud's. My vitamin D, B12, calcium and haemoglobin levels are all low and have had to have vitamin injections. The worst thing of all is the tiredness - I feel as if someone has sucked all the energy out of me and although I only work part time as a nursery nurse I find that all I want to do at night is cry because I am so exhausted. This is not helped by the fact that I am now suffering from restless legs at night which keeps me awake. Just wandering if anyone else has suffered with any of these symptoms feel very alone with this and old before my time x

3 Replies

Chronic fatigue has always been the worst problem for me, I work part time and even that feels too much.So I do nothing else the rest of the time but rest. Tired achy joints are common and my wrists and ankles feel the worst. I have pains in mt ride side just below ribs and find eating small meals helps,, any way you are not alone, there are loads of us here that will read and reply to your questions. It is a chance for us to vent our own woes and helps us feel better also to know we are not alone. hang in, this is a slow progressive disease and we can move on, just slowly and with rest,, take care doughnut03 xx


Thanks for the reply also get pains on right side, had gallbladder out couple of years ago and always put it down to the after affects of this - dr assures me that not the case. Hard to find time to rest as I have 2 children of primary school age so as you can imagine life can be quite hectic! XX


What tests have you had done, and exactly what have they said as being the decision for your diagnosis? I'm guessing your liver functions tests are abnormal?? The symptoms you describe are typical of PBC, but there are also other auroimmune conditions that have similar symptoms, and when I saw my Dr he did follow up with lots of tests for all other autoimmune conditions, just to make sure there were not other things going on. If you are in the UK (or even if not) I would check out the PBC Foundation site, and if you can, get their info file. A lot of stuff on the internet can sound overly scary - and some is just plain wrong! While it might seem mad to you at present, most people live happy, normal lives with PBC. Some of the best things you can do is to make sure your diet is as good as possible, get plenty of exercise and, personally, I would give up alcohol if you have not already. I had problems with weak wrists and aches and pains and (although probably not PBC related - it's not clear if I have it or not) the best thing I did was to join a gym and have a gently increasing programme of exercise, gentle weights, anaerobic stuff and to do yoga and more walking. Take care.


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