hi, im a first timmer everyone

hi everyone, this is my first time on here so not sure what to say or do. ive had PBC since2008. but had to wait another 6 months before they were able to do anything for me. i have to say that im greedy, my body has decided that i should take every symptom that goes hand in hand with the PBC. things have been getting worse for me over the past 4 months and had another byopsy done last week and have to start getting bloods taken every 3 wks for a while. the pain is terrible and ive been taken off pain killers that helped me cope with it but as you will all know what seems to help you cope is the ones that react badly with the liver. does anyone have nights that they just cant sleep? no matter what i do im getting less and less sleep but am totally shattered all of the time, it just doesnt make sense. hope everyone is feeling as good as they can be.

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  • Hi Derann

    Sorry to hear you having a bad time just now. I have PBC/AIH crossover syndrome and I am on steroids for the AIH part. This is helping me sleep. Sleep deprevation is a nightmare as my sleep pattern was bad before due to restless legs and being too hot in bed. Where is your pain? I get it on the right hand side just under the bust. The steroids have also helped ease this although my consultant said that I should not have any pain! I was beginning to think I was going mad and imagining it but many people on this forum have also talked about pain in this area. Take care x

  • jtxx........ Yes the pain under the ribs that Drs say we shouldnt get.... I say- just walk in our shoes for a day..... then they would know that it certainly does exist. x

  • hi Derann, this site is really good for sharing info and experiences.its amazing how so many of us suffer similar problems that are not always recognised as an actual symptom of pbc.

    i was diagnosed in 2009 after almost a year of severe itch and many other symptoms/issues-bruising, fatigue ,dark urine, enlarged lymph nodes,memory problems, sjogrens, achalasia, weight loss.

    Although i tested positive with AMA I was initially misdiagnosed as having a blood infection. the itch caused a great deal of damage and sleep deprivation.i continue to suffer with insomnia despite feeling dog tired all the time and often fall asleep at strange times!

    My bloods are very unstable and have reacted badly to some of the itch treatments. fortunatly I dont get so much pain as discomfort in the liver area.

    I hope they sort your pain out soon.

    X

  • I have a sleeping tablet prescribed( from doctor) for when I'm so tired I just have to get sleep. It's up to me when I use them and I don't personally want to use them all the time incase I rely on them. It's a vicious circle if you don't get sleep it exaserbates the symptoms. Hope that helps

  • Hello everyone. Out of interest exy21 what was the sleeping tablets you have been prescribed? That is if you are in the UK.

    At present touch wood I'm fortunate that the only symptons of PBC are itching (evenings, late on - 11p.m. until around 5a.m. if an evening when I have the itch) and though I am awake all day (most of time rising at 6a.m., bed at 11p.m)

    I find I feel restless of an evening and almost every night wake up once or twice, most of the time living with unbroken sleep.

    I am only on Urso but didn't want to take sleeping pills as my theory as a lot of PBCers say, it is normally toxic to our livers that are struggling as it is taking any drug but I have definitely wondered myself about taking sleeping tablets some nights.

  • i take sleeping pill (ambien) doesn't seem to affect pbc one way or the other

  • Hi Derann,

    Sounds like you are having a miserable time of it at the moment, hope things settle for you soon. Ive been diagnosed for 5yrs now, my main symptoms are both liver & spleen pain,fatigue and the dreaded itch. I am still able to work mornings, sleeping away the afternoons. Sometimes if the pain under my ribs(both sides) is bad i have trouble sleeping nights, not usually though.

    This is a good site and i hope the fact that you are not alone suffering from this wretched PBC, gives you the strength to fight it and carry on. xx

  • thanks everybody for your help and support. my itching was getting really bad at night but the doctor prescribed another pill for me and the difference is like going from night to day, its called FEXOFENADINE and its 180mgs. does anyone ever get left with scars where the itch has been so bad that you break the skin? its embarrassing in the summer months. with the sleeping thing i can go for about three days and only sleep about 4hrs within this time but feel shattered at the same time, my husband use to keep telling me to "get to bed and lie down and sleep", till one night i kind of told him, not very kindly i must say, that it wasnt my idea of a fun night either, so now he just accepts it and leaves me to it.

  • Hi Derann, yep, my skin was "significantly damaged" i spent some months having a disgusting purple baths that stained my skin an unpleasent brown colour twice a week, cant remember what the solution was but the treatment took place in the dermatology unit at a local hosp alongside uvb treatment 3 x a week, also had to tape torn areas with helan tape. i used a cheese grater which shreded my skin (felt flippin good at the time) not sure what other meds you take but i have also used rifampicin, sertraline, questran, hypnotherapy, various moisterisers and cooling creams to soothe, anti histamine to make me sleep and break the itch cycle. keep pestering your gp if it remains a problem, there are more things to try.

    Take care.

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