Update

Since initial diagnosis and some doubt from me regarding medication and the hospital Dr saying once I take Urso I will stop itching and only on half dose

I had spoken to Robert last week, his good advice led me to contact my GP and he was not happy with what had been done and tests not done. I am very lucky in the respect that he is totally supportive, he has rung to change calcium and read and read up for days on PBC. He has had my results looked at by a liver specialist and friend. She said to him, I should keep taking the Urso at correct strength and the Questran (Boooo), but not the steroids yet. She says we have not got the whole picture as yet, it is a AI liver issue, my weight loss is a concern.

She has agreed to squeeze me in to see her in two weeks, Easter got in the way a bit.

Meanwhile my Urso is now two times a day so I can eat my meals and not affect the Questran, found cranberry and raspberry is helping, still cannot get to the two sachets. Does it make anybody else's throat sore from the grit left after you drink?

I hope to stay here on Health Unlocked, if I have not got PBC but another AI liver condition. The support here has been amazing and I have every symptom of PBC so time will tell.

2 Replies

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  • Hi Jo_Br

    What a great GP you have and glad to read you are going to see someone more able to help you. I remembered you find the questran difficult to take, can I suggest a thicker juice like orange and mango. I measure out the liquid amount sprinkle the questran on top and leave to soak before using a fork to sort of fold/whisk it in. I follow the mixture with a glass of water. Before I started doing this I found the questran gritty but now I find it more tolerable. I also sip it slower than in the beginning.

    hope this is of some help.

    best wishes

  • Thanks ButterflyEi, I certainly feel relieved that I will see somebody else. It is the not knowing what is wrong with me and doI need less/ more or different treatments that are adding to the already tough days.

    I started off quite upbeat and probably will get back to that, it's still all new, the last few days I have been quite weepy. The care for my Granny and total exhaustion is probably not helping my emotional state.

    I managed to drink it down in two goes today, I can't sip it as it's the coating on my throat that makes me gag. I am finding cranberry juice makes it easier.

    Sticking at one still as I am battling diarrhoea and it is I am sure the Questran, I have to make sure I do not lose any more weight and was eating well until 2 days into the Questran.

    You are lovely and I hope you have some itch free days this weekend. xx

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