PBC Foundation
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Hi I'm 48 finally diagnosed Dec after 2 years with a useless locom doctor, who has had to leave the trust. (not surprised). I now have a lovely lady doctor who has been great, had another scan, bone scan and am waiting for liver biopsy results. It's strange you fill like the only person who has this disease as no one has heard of it who I know. I cannot drink anymore which upset me, as I like a beer. I go to the gym 2/3 times a week and ride my horse 1/2 times week. I try and eat healthy, Would be nice to talk to people who have PBC.

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HI Horse field 2! Good luck with your biopsy report. I have been recently diagnosed. I think it's been 6 weeks now. I'm taking Urso and my liver function tests have been improving. Not going back to the hepatologist for 2 months. I have stage 3 fibrosis. I really didn't have any symptoms. Maybe I was a little tired but nothing that would have sent me to the doctor. I have a horse too. Now that the weather has improved I try to get out for riding more often. I live in Colorado U. S. This forum is pretty quiet on the weekends. You will probably get more responses later in the week. Everyone is very positive and supportive here. Welcome.

Pam

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Thank you, do you take vitamin d? I think I'm taking too much now 800 4 a day, I have trouble going to the toilet and it's getting worse. Was going to to try just 2 a day x

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I do take vitamin D . I haven't had a problem going to the toilet but I try to eat a lot of fruit and salad. You could be on the right track about taking less of it and see about getting outside more now that summer is here. I don't think you have to stay out too long. I think it's 15 minutes. Have you started the Urso yet? Some people have bathroom issues with that.

Pam

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Hi yes been taking urso since December was a problem but just seemed to have got worse since taking vit d, I've just started taking syrup of figs it seems to be working. Sam x What type off horse do you have I've got a heavy Weight English cob and a Welsh sec D. I'm from Kent UK.x

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Hi Pam,

I live in Colorado too! I live in Pueblo West about two hours south of Denver and was wondering what city you live in. I am new to this site but not new to PBC (diagnosed five years now). It is so nice to find other people with PBC. I am the only patient my GI has with PBC so it is very helpful to hear every one's story here.

Stay as well as you can!

Kathy

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Hey QBCooper! I live in Kiowa. I'm about 50 miles from you! I'm new to this. I was diagnosed about 6 weeks ago. I'm stage 3 fibrosis. I'm a little bummed out about it. It's nice to know you are not too far away.

Pam

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Hi Pam,

Maybe we can meet for lunch or coffee in Colorado Springs some times. I will be happy to exchange experiences with PBC and what our doctors are doing to help us.

Six weeks after a diagnosis is a pretty scary time. You just hang in there!

Kathy

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I would love to.

Pam

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Hi Pam,

I am in Colorado Springs most Saturday's and free after 2:30 also I go to town for a weekly appointment most Tuesdays and free about 2pm. Would love to share notes with you. You are not alone in this! This week I will be in town on Monday. Just let me know where and when you would like to meet.

I also have a service dog who I would like you to meet (if you are not allergic or afraid of dogs). Amazingly enough she has learned my body chemistry and will alert if something funky is going on with my liver. She is very friendly and likes women and children especially.

Look forward to meeting you! Until then, chin up, after having this for five untreated years I can tell you there is so much hope and new treatments on the horizon, getting ready to break through!

Kathy

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Horsefield2,

Welcome, but at the same time sry that you had to fall into this website like the rest of us. It's such a relief to have people who understand what we go through from day to day. Everyone here has been a great source for more information, to compare side effects, & simply to just vent. Hope your results come back well.

Shannon

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Thank you x

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