Diagnosed in June - update

[Junolee]

Hi there.

I had my third clinic visit (to my gastro consultant) today since being diagnosed in June with PBC. (I had three weeks in hospital of tests incl biopsy)

I had jaundice, low iron and malabsorbtion of most vitamins. I am back to normal in most things now. I have been on various supplements from time to time and calcium & iron all the time as well as Urso & Steroids. The jaundice is nearly cleared up, my skin is back to normal colour, my eyes are almost clear. I've had bloods done on average every two weeks since getting out of hospital. The pattern emerging is fascinating. My general blood tests are all fine. My LFTs are mixed. 2 tests show reductions, 2 are still elevated. They are now going to wean me off the steroids down to 15mg tomorrow for 2 weeks then 10mg for 2 weeks and I am going to start on Azathioprine and hopefully that will help bring the inflamation down further - more bloods in two weeks.

Although, the jaundice is quite a scary thing and very serious, I have tended not to have any pain, sickness, digestive problems or the itch and great fatigue that seems to be very debilitating for others, it is really a very strange disease. I am just hoping now that I can tolerate the Azathoprine and that it will make a difference.

I suppose in a lot of ways I am lucky, I stopped smoking nearly 5 years ago and have always had a low fat diet. Other then excluding alcohol, which I don't really mind (at the moment anyway) and all the medication I have not had to make any major lifestyle adjustments just yet. I feel well.

[mumofthree]

You've had a rough time of late. Glad to hear you are feeling so much better. Knowing you have PBC is enough in itself without having some of the horrid symptoms... I have the joint pains, fatigue, fuzzy head, dry mouth and recently itching inside my ears. I hope you never get them because I wouldn't wish them on my worst enemy.

Best wishes and hope the new drug regime works.

[Hidden]

Hello junolee.

Glad that you seem to be coming to some stability with PBC if that is what one can say.

I myself have only really had fatigue and itching, latter reason for seeing a GP in 2010 and being diagnosed end of that yr. These days with certain lifestyle changes without thinking about them except one (I was working full-time, overly-long hrs in 2009/2010 and relatively new job that I see now as the biggest mistake I made re employment. Was fortunate that my husband asked me to quit, gave his reasons, several wks discussions later and I did. That did rid me of fatigue), I am only plagued on/off with the itch (last night it was non-existent again, comes and go,only get later at night until around 5a.m but these days I find it doesn't actually keep me awake if I am tired).

It is my medics that are causing the more hassle! 5 days ago I had repeat bloods - full blood count (FBC), LFTs and GGT, well that is what I went for but got print out 2 days ago and discovered all I had done was the FBC, renal and GGT, NO liver or bone done! I had rang the surgery to check if the results were there and then my husband picked up the print out enroute home from work so I got some heads up if you can call it that. I knew that the GP wanted to speak to me, 'to discuss bloods' and was informed he wanted me to make a telephone appt which was done at the time of ringing for results.

Yest I received a letter regarding the results and it does state a telephone appt is all that is needed, it is 'not worrying' and it is about the recent bloods. I was informed in big bold letters that I have not to ring the surgery and ask for an 'urgent appt' as this is not an urgent matter which I don't deem it so myself (well it is important and would prefer to have discussed sooner rather than next wk., earliest could get the tel appt).

My conundry now is noticing there is no liver or bone on the print out as there should, should I ask the GP when he rings me next wk or see if he has spotted it himself? I seem to have got lumbered with a particular GP at the practice with this now and he said earlier this yr that he couldn't see why I need a print out of the bloods.

I thought that given I always have the same bloods done and have previously twice there this yr., the nurse would have known what she was doing, altho' I always stick in the GGT one as apparently that is an easily forgotten on according to the hospital doc.

Like you junolee I have had just under the normal range in the HB count and noticed on this recent print out that it has gone down one point from what it was 4mths ago. The renal one has always been normal but no idea what the liver and bone are currently as don't have, the ones that are most important (ie bilirubin - 4mths ago mine was still normal as has been since before diagnose) have been apparently missed. Given I'm a woman who knows she has started the change this yr (I'm 48) know that won't have helped somewhat but also have noticed that being slightly anaemic or anaemic and having PBC can be quite common. I reckon I'll prob have repeat blood tests for FBC a bit more frequently for awhile now but can tell you I just do not have much faith at all in doctors and they don't seem overly-willing to let a patient in on it so they can perhaps note something that they have themselves missed. It's that God Complex thing!!!