I'm new: Hi I'm 48 finally diagnosed Dec... - PBC Foundation

PBC Foundation

9,384 members7,989 posts

I'm new

Horsefield2 profile image
11 Replies

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.

Written by
Horsefield2 profile image
Horsefield2
To view profiles and participate in discussions please or .
Read more about...
11 Replies
4pjx__ profile image
4pjx__

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

Horsefield2 profile image
Horsefield2 in reply to 4pjx__

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

4pjx__ profile image
4pjx__ in reply to Horsefield2

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

Horsefield2 profile image
Horsefield2 in reply to 4pjx__

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

Q8Cooper profile image
Q8Cooper in reply to 4pjx__

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

4pjx__ profile image
4pjx__ in reply to Q8Cooper

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

Q8Cooper profile image
Q8Cooper in reply to 4pjx__

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

4pjx__ profile image
4pjx__ in reply to Q8Cooper

I would love to.

Pam

Q8Cooper profile image
Q8Cooper in reply to 4pjx__

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

Shulsey profile image
Shulsey

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

Horsefield2 profile image
Horsefield2

Thank you x

You may also like...

I'm new here

I was diagnosed with PBC in May this year and my specialist has just told me that I am further along

Hello I'm new! Bit confused about ALP and imaging options..

being stable for a few years, my ALP has doubled, and stayed like that for some months. Currently...

New here! Question about Diagnosis

was that my liver enzymes were high. I was referred to a GI, who also specializes in liver...

I'm newly diagnosed with PBC

I have not yet had the liver biopsy but I have so many questions. Such as is it okay to shampoo and...

Travel insurance (I'm in UK)

insurance. I don't even know where to start. I have PBC, stage O, I have not been given any...