Hi, I've been diagnosed in 2014, stage 2 Pbc, AMA and ANA positive and fatty liver. Been on Urso since then and I have been going very well, but out of no where, I've had a set back where I am extremely tired, pain in bones, itching flared up again. Does it work that way that you have like set backs every now and then? I think I sort of forgot that I had a sickness, but boy, this woke me up again lol.

10 Replies

  • I certainly find that at times its one step forward two back. Up until two years ago I was extremely fatigued and in a lot of pain with aching bones and muscles. Then last year all the pain seemed to go I was full of energy and I was able to go snow boarding at Glenshee. This year the fatigue has taken over again and the pain is beginning to return. I certainly wouldnt have the strength to snow board this year. I have learned to go with the flow.😊

  • yes

    ive been great and I was on a fitness kick and now seem to be thwarted at every turn

    My knee just decided it was sore for no reason same with my foot...Now I have the flu and feel awful but so far so good with the itch! Chin up!

  • Yes it fluctuates good weeks & bad weeks x

  • Yes, I recognize this too. I am usually better during the summer and then when autumn comes and the weather is colder I get more achey and more tired. And then it goes up and down, in a very unpredictable pattern.

  • Thank you very much for all the replies. This makes me feel "normal" now. Feels so alone ey? How to explain it to the family is the worst for me...

  • Explaining is not easy so I just tell them I'm not doing well. My sons live near me and I just do not go over if I am not up to it and we don't spend that much time together since one son is married with two school aged kids and the other is living with his fiancé and getting married in November. Hubby lives in another dimension and is so laid back he would not even realize anything was different lol. So one day goes by and I'm fine the next not so much. We both got sick earlier this year. His lasted 3 days (but he whined for 6) I was down and out for 8 days - like wow!

    I'm in Stage 2 as well and was diagnosed in September after a nut job doctor watched my liver numbers go up for three years straight. I forced the issue that something was wrong and the do recommended another type of doc to see.

    Best advice. Stay healthy, manage your own illness and take the meds. What I have read here has given me hope because when I first found out I thought there was ver little.

    Best to you.

  • Ah awesome, sounds like you havent lost your sense of humor at least lol. Thanks for that. Xx

  • Always important to keep things in perspective and to keep on trucking.


  • I yes i think pbc can flare and calm ..it doesnt go but ive found that if im just getting over something i then get a worse patch of liver symptoms.my theory is that the pbc antibodies are reactivated when the immune system kicks to fit an illness of some sort.if you can get some rest do.best wishes


  • I seem to have a good days, bad days pattern as well. For me, stress definitely makes it worse. I was making good progress until hubby's illness and 3 day hospitalization in early December put a large hole in my recovery ship. I am slowly regaining lost ground and fortunately, his difficulty was a temporary one and seems to be fine now.


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