Hi, I have recently been diagnosed with PBC, I have found the information I have found here really useful and reasuring. I was prescribed urso and deloxetine but had to stop taking the deloxetine due to horrendous side effects. I have been getting awful nausea and stomach/back pain for a week, this tends to be in the evening around 7 pm. Does anyone else have this? Also terrible joint pain mainly in the morning. No itching yet.

8 Replies

  • Hi yes I get all that the pains in my legs sometimes makes me cry the sickness and not wanting to eat. I'm forgetting things the itching the joys of Pbc lol.

  • Thank you at least I know now 😊

  • Hello,

    Yes unfortunately I get all of the above too, the joint pain and itching, struggling with a stomach and liver discomfort flare at the moment.

    I found I manged the Urso better building up with them, taking them one at a time through the day, if you're struggling with side effects you could ask your GP if that would be appropriate for you too.

    Welcome to here, everyone is very supportive.

  • Thank you, I'll try that.

  • I've found this really useful as no one seems to know what PBC is. Knowing that I can get answers from people with the same 'condition' is very reassuring. Thank you for the prompt reply 🤗

  • Hi,

    No problem at all. Yes, this has been such a helpful place to get answers and just be in contact with people in the same boat. Worth joining the PBC Foundation too.

    When I was diagnosed, I didn't know where to look and there was so much scary stuff online about life spans etc! I agree, it's still a pretty much unheard of condition outside of the liver and gastro specialist circles. The side effects of the condition and auto immune things generally can be uncomfortable and frustrating sometimes, but try to take things as they come. Have found getting all the medical help you can is good and then trying to find things that can calm the body and help yourself naturally too. Guess we're all a work in progress with that :)

  • Hello Jules-S.

    I sometimes feel a bit nauseous before the evening meal. Not a regular issue for me. I find I can eat extremely well early morning and lunchtime but taper off by early evening. As silly as it sounds I find that just having a simple snack can dispense with this feeling. If I really don't feel like much tea I just have a pick as best I can and leave the rest. I don't tend to eat anything after the evening meal so for me it can be a long space between eating breakfast following day. I have gone back to having the 2nd and final dose of urso of the day around 8.30p.m. as I started to find I was encountering heartburn if I had following the evening meal. I find this for me is the best option and I don't get heartburn.

  • Try eating little and often rather than a normal sized meal...youll hopefilly find this helps with nausea and stomach pain.try not to have too much fatty stuff as this is more difficult to digest.

    Just bear in mind that there could be something else going on so if you havent mentioned this pain to consultant you need to tell yhem

    I blamed my tummy ache on my liver but then when i had a gastroscopy they found i had multiple stomach ulcers and hsve since had medicine to get rid of these.good luck gettimg answers cazer

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