New to this whole PBC idea!

[MissT137]

Hi everyone, as yet I have not been officially diagnosed with pbc but my lfts are abnormal and I have got the most debilitating chronic fatigue to the point I can't work at the moment! I had severe obstetric cholestasis during both my pregnancies, to the point I thought the itching would see me jumping off a bridge, they even took my placenta for medical research after!

I'm so worried about my liver specialist appointment next month, I'm already itching, primarily my head which is so bizarre and I can't imagine living forever with both the fatigue and the itch, it was horrendous before but at least there was an end date to it with giving birth!

Sorry for the long post, it just feel like my once energetic life is falling apart!

[Hidden]

Hello MissT137.

I never encountered any itching throughout both my pregnancies during the latter part of the 1980s but I started itching 24/7 back in early 2010 when I was 45. By the end of 2010 I had been diagnosed with PBC.

Itching (or pruritis as it is medically referred) seems to be one of the most commonest symptons of PBC alongside fatigue. I had fatigue back in 2010 but at some point following year it vanished. Since then due to itching at night moreso these days I have broken sleep through the night and then get tired alter in the day.

I can really sympathise regarding the itch as I've now been itching not far off 6yrs and me too cannot imagine living the rest of my life with the itch. I know over time and taking urso it has altered and I am hoping that it remains so with passing time. I would hate to go back to how it was during 2010.

I don't think there is anything one can do to rid ourselves of the itch unless a medication would work. I have gone through early days where I felt a bit down, didn't eat anything for a day and slouch about and then I found that the itch vanished for a couple days. So to me it says that having to eat (and drink) to survive means that we then have to deal with the itch.

I know there are certain things I'll probably never do again now, one is going to the cinema as I doubt I'll sit through a movie on the tipping seats that they have and feeling prickly all the time as I do when I am quite still for a period of time. But it's nothing major. I know I'd hate to have to go into hospital to stay for eg as I could not even think about having to lie about with the itch now. I cannot even sit at home and read a book unless I take one to the bath with me as I start feeling prickly and then fidget.

I find that I try to be on the move most of the daytime as it seems to be the best solution. I know I've not gained any weight since diagnosis but I think it is probably due to the fact I am on the go and also during the night fidgeting about so burning those calories.

I've been reluctant to ask for the first line of defense that is considered in itching in PBC and that is Questran (or colestryamine in the UK) due to the fact that it seems very hit and miss if it will actually work. I might at some point in future have to consider something like that but for now I plod on.

[MissT137 in reply to Hidden]

Thank you for replying Peridot, honestly you have my utmost admiration for managing your symptoms so well! Unless you've experienced it yourself it's difficult to imagine how badly the person suffers, especially at night!

[Hidden in reply to MissT137]

Hello once more MissT137.

Can be frustrating at times especially when certain family members unintentionally do not understand just how it is.

I remember in the early days of being informed I had PBC. I just happen to say one day when my brother was here for tea that I was feeling rather tired. It was due to fatigue back then and the reply I got from my brother was that 'we all get tired at times'. Yes it is true but at the time it seemed to be an on-going thing.

Nowadays it is a case of feeling tired later in the day after broken sleep at night but also currently I am going through a bit of a guilty phase as my husband is suffering a bit and he works long hours so if I don't sleep for several hours at a time during the night nor can he most of the time. He has taken to having naps early evening to try to catch up. I do envy this as for me I just cannot do that as I feel so prickly. I have to be desperately tired to do that. I know when we went on holiday (5-6hrs drive) last month, I simply fell into a deep sleep not long after we had set off and it was the same when we were coming back home the following week. It's not normal but it's something I have to deal with due to this PBC. Doesn't help either that I am going through the menopause either and thankfully I'm not encountering much in the way of symptons of it but I do find I feel very hot at times and that is definitely not good if one feels prickly or has this itch of PBC.

[Mrsbry12]

Hi MissT137,

I was only diagnosed with the early stage of pbc last Wednesday and have been taking ursofalk capsules two twice daily which means I take four a day.there were traces of it in 2010. And I have always felt tired I am 40 years old and work as a care assistant on 17 hours a week.

[Twinkle26]

I am waiting for my first hospital appointment too, I was told during routine tests for my fatigue which I've had a few months but put the fatigue down to the winter lol. My head had been itching for months too but again I didn't connect the two, I thought my shampoo needing changing. my eyes start g like I've hay fever and I get a tightening pain in my stomach, I've started writing down what's going wrong it's quite a list? Underactive thyroid for years and newly diagnosed diabetes too. The aches and pains are pretty bad especially my left leg, I've had a steroid injection to help with my hip pain, I couldn't walk after that but it got easier. It would be good to compare their findings in nice we have the next appointments. Good luck.

[MissT137]

Thank you Twinkle, I've had another blood test yesterday but need to wait until the 22nd to see the Liver specialist!

Interesting that your head is itchy too! Will keep in touch x

[DonnaBoll Administrator]

I can so relate to that awful itching. It was part of my life for many years and is indescribable. I posted a list of things that may help or make the itch worse. It is all too often a trial and error process for most of us. If you can't find the post let me know.