CONFUSED.COM sorry its so long winded but its do it all in one go or chicken out and not do it at all.

[123PAT]

Hi here goes with my story diagnosed with PBC in July (2017) last year as my GP first thought i had cancer following a medication review then sent for a ultra scan .Finally sent to gastoenterology at worthing hospital other tests followed under the 2 week rule such as another ultra scan a CT scan more blood tests and the old camera down the throat more medication given after that as well as examinations and there it was a final diagnosis of PCB I thought (phew) thank god its not cancer i can deal with anything now. But whats PBC i asked so was given a leafle told it explained everything put on 2 URSO 2 twice daily and would be seen at regular intervals to monitor my condition. Went home read the leaflet didnt understand any of it to be honest it explained the 4 stages i dont know what stage i am it explained the side effects woopie i didnt have any so back to work i went swallowing my pills (little did i know) 6 months down the line i had itching constant fatigue pain in the right side only sleeping a few hours at night so back to the GP i go who sigtns me off work and sends me back to the Gastroenterology doctor more tests he says nothing is showing up on scans to show why i have the pain in my right side so he doesnt think its anything to do with the liver told to go back to my GP I now have pain in my lower back as well after walking short distances so GP has said she can only think its a trapped nerve in my right side so waiting for appointment from physio for that and having to do exercises given to me for my back which are not helping at this time, Fast forward another 3 months still not back at work (nearly a year now) still waiting appointment for physio for right side GP forgot to refer me still in pain right side and back swallowing 7 tablets in the morning and powder for itching 2 tablets at night plus powder and waiting results for celiac disease after another blood test. Does anyone else have pain in the right abdomen I have it most days but consultant says he can't find any reason for the pain.

[butterflyEi]

Hi 123PAT

Sorry to read your story to diagnosis has been a difficult path. If you have not already done so join the PBC Foundation, their website (free to join) has a lot of useful information.

I am an itcher so I can well empathize with this symptom. I take the cholestyramine powder, and on the advice of the PBC Foundation I take one sachet before breakfast and one after. If you are on the same powder be careful not to take your 7 tablets near the time of the powder as it will reduce the effectiveness of those tablets. I know it is time restricted 4-6 hours after for taking any medication but I also think that there is a time limit prior which may be 1 hour but I do not have the patient information leaflet with me to check.

I have never been staged but was asymptomatic (yes had to look that one up!) at the time of diagnosis.

I am not sure but I believe I have read that the test for celiac disease is not always definitive. For myself I have almost completely removed gluten from my diet in the guise of no or little bread, rice and pasta. Although I appreciate there is gluten in almost everything I have to say I feel better for it. I wonder if you might try an elimination diet and see if anything irritates your system.

Hope this is helpful to you.

best wishes

[123PAT in reply to butterflyEi]

Thanks for your reply I already belong to the PBC F. I take my powders for itching 1and 1/2 hours after medication on advice of consultant and again in the evening. Still waiting for results for celiacs. It's the pain in right side that's the worst as consultant says she doesn't know why I get that and has put it down to a trapped nerve. Waiting physio for this.

[GrittyReads]

As ButterflyEi has said, do please contact the 'PBC' Foundation' who host this site on 'Health Unlocked' (link at top here, or Google 'PBC Foundation' … but don't check out any old PBC sites on Google, as so much of the info is ancient and wrong.

PBC can usually be diagnosed purely by blood tests:

1) the presence of the autoimmune factor AMA-M2, which is a marker for PBC;

AND 2) abnormal levels of the liver function tests (lfts) that are typical for PBC - usually high than normal levels of ALP, and/or ALT, GGT, etc.

However:

3) If there is doubt from these two tests you would normally be offered a liver biopsy and/or a fibroscan.

[NB There has to be at least 2 of these tests positive for a diagnosis of PBC - one alone (eg the presence of AMAs alone) is not enough. I would expect any reputable medic to also test for all other liver and autoimmune conditions, just to be sure. Plus my PBC specialist also takes a full medical history, as well as family medical history info.

Symptoms are also relevant (fatigue, itching, joint and muscle pain, etc) but you cannot be diagnosed just on symptoms ].

I would try to gen up on as much about PBC as possible (from the 'PBC F' site) and then ask your self if you think you were checked and tested and advised enough. If in doubt about anything, talk to the 'PBC F advisors, they are lovely.

It may also be worth checking if you are receiving the right dosage of Urso for your weight. Also, joint and muscle pain is common for PBC, but it can be caused by lack of vitamin D (which is not digested properly if the liver is impaired) and also by poor absorption of calcium, which can happen if Vit B is low. So, you need to be tested for your vit and mineral levels. Diet is also important, and the 'PBC F' gives loads of advice on good diets for a healthy liver.

Exercises, if good enough and appropriate to your condition may also help, but you need to be sure they are appropriate and that you are doing them properly … and that you were shown how to do them properly. A good gentle yoga class might also help - but 'gentle', and learning to relax is important to. As is treating yourself and trying to keep some fun and happy activity in your life. It's hard, but try to treat yourself and have fun, do things you love as all autoimmune conditions thrive on stress.

Hope this helps, do check out the 'PBC F' site and talk to them,

take care,

Gritty.

NB For the diagnosis, I would expect you to see a hepatologist (liver specialist) and if you can see one who specialises in PBC, even better.

[123PAT in reply to GrittyReads]

Thanks I already belong to PBC F and

Consultant also put me on folic acid and vit D3 for a month but then said she didn't think I really needed them. It's more the pain in right side I worry about as consultant said she doesn't know why I get any pain so they are now saying I might have a trapped nerve can't see how myself though.

[GrittyReads in reply to 123PAT]

Trapped nerves are ridiculously easy to get: you only need one thing slightly out of alignment, somewhere, for 'knock-on' moves and adjustments to cause a tweak somewhere.

Also, do you sit at a pc for any length of time in the day? Or do something that could cause a minor body imbalance: like often slumping one way when sitting reading, watching the TV or using the computer?

I ask because I know from personal experience that these things can be happening without us ever realising. EG: I have a long-standing pain/ache in my lower, right side/back … sort of … bottom of the rib-cage - at the side/back … eg where bottom of lung or top of liver would be. I too was tested and checked, X-ray, physio etc. etc. and ... nothing! It's not too bad, and it goes away if I keep up yoga (which I re-started after the pain had been checked out) and try to be careful that I'm 'equal-sided' in what I do. However, it's often there in the mornings, still, and I've put it down to: always sleeping on my left side, so the right is 'stretched over' all night, plus doing all my 'mouse work' with my right arm, when I'm on the pc - which is a lot! I think I may also 'slump' to the left - thus stretching that side - when knitting, while watching TV.

I should probably have my pain, rechecked, but I'm sure it does go away when I can remember to attend to all these points. Plus, I'm just getting older!

Hope that this helps, a little, but I do hope that you get some solutions.

Take care,

Gritty.