Newbie!!

I have recently found that I have pbc. The consultant drew some squiggles on a piece of paper and said 'u r here, then u will get to this stage and then this is, well we will cross that bridge' 'i will c u in 5 years!'. I had to look it up- very scary.

Not sure how long I have had it, been suffering with syptoms for a while now, put it down to other things happening in my life, a few ops, moving house, splitting up with partner, getting back together, finding out I was pregnant, losing the baby' losing my job, getting a new one, and then finding out I had pbc!!!!!!; cud life suck any more?

The hardest thing at the moment is that although I love my new job I have had to go full time as the part time position was not going to be available anymore. The exhaustion makes this very difficult some times.

Oh and on top of all that the meds constipate me, so the size of the back of a bus! Can't lose weight either.

Ok whinge over! Night all x

Just a question though, does anyone else suffer with really dry skin?

12 Replies

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  • Have you been started on URSO, could you ask to see a different consultant, 5 years seems a very long time before follow up, will you be having your bloods monitored with your GP?

  • Yes have been started on urso. Gp very sympathetic but doesnt know much about pbc, she did chase up the consultant as she wasnt happy with how id been treated . I was told they wud see me but havent heard anything. No talk of regular tests.

  • oh my god theese people call themselves doctors, youll find most of them dont know much about pbc, youll have to find out yourself, like bein on this site its great everyone with the same prolbem, i would really consider geten didderent liver doctor 5 yrs wayy to long with out montering, the likes of blood, scans, daxa scan all that, what my sister kept saying to me, Ann theese doctors are working for you and you have to take charge as well, if your not happy with some doctor change it.

  • Hi. definitely get yourself another consultant. You should be monitored on a 6 monthly basis. Bloods need to be checked and also maybe ultrasound scans every year or so. Have you had a biopsy? Should be on Ursodeoxicholicacid. As for dry skin - I guess you are getting itchy. That tends to make skin dry. It's one of the symptoms. The Urso may help. try some plain moisturiser - Dr gave me a big pot ages ago and it does help.

    Depends on your location but research consultant in your area. Take care.

  • Thanks guys for your comments. Looks like i still have a lot to learn. Was told when i was diagnosed that there has been no progression in the disease. Please tell me how he can tell when it was only just diagnosed so there was no comparison. Have been told that they 'believe' with me it should be slow progressing. Have had the itching and exhaustion for a very long time, its been an in house joke that i have fleas!

  • Yes I have dry skin, dry eyes, dry everything!! I'm being tested for sjogrens as a secondary illness. Hope this helps.

  • Thanks it does. I will look into it

  • Hi Rynick

    Join PBC Foundation (free) pbcfoundation.org.uk and get accurate info on PBC and leaflets you can take to your doctor. Then she will realise you need to see a different consultant.

    Good luck

  • Rynick, you need and are entitled to certain things once you have been diagnosed. You need regular monitoring of your bloods to see if you are responding to the urso, as others have said this should be at least every 6 months. You should have a DEXA (bone scan) as people with PBC can be at risk of osteoporosis. Go back to your GP and ask for a referral to a different consultant. I would contact Collette at the PBC who will be able to give you sound advice. Don't let this lie and don't be fobbed off, PBC can be unpredictable and affects each individual in different ways.

  • Thanks donkey, its hard when the professionals keep u in the dark! But i will ask for more info and support thanks

  • I have dry, red hands, dry eyes and am thirsty continuously. Sjogren's was recently ruled out and my glucose tests for diabetes are fine. I've tried many types of lotions to help with my hands and skin, but nothing seems to work.

  • I have very dry skin and the itching at times drives me nuts. I was told by my liver doctor to use hydrocortisone cream and it helps.

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