New member newly diagnosed

[JGM59]

Hi. 59 year old man in Seattle. Just diagnosed as stage 3 and taking Urso and Cholestyramine currently. Waiting on bone density test and referral to hepatologist. The urso has brought my alone phosphate down from 2007 to 683 and bilirubin down from 1.8 to .7 but new to this and pretty nervous

[Jlruggie]

I was in stage 3 , reduced to stage 2 thru what I believe lifestyle changes, Ursodyoxycholine, daily yoga, weights, Ayurvedic habits, especially skin care. I’m 60, diagnosed 20 years, no symptoms of itchin or fatigue. Get a hepetologist who specializes in pbc. Join a laughter yoga group. That’s all I got today. Try to relax.

Jlruggie

[JGM59 in reply to Jlruggie]

Ok thanks that is good to hear. Much appreciated

[Hidden in reply to Jlruggie]

Good to know...that it can remain like that for 20 years.

[Sachin1234 in reply to Jlruggie]

👍🏼🤗

[Hidden]

Don't worry. Seems like you are responsive to urso which is fortunate. That will keep slow down the progression of your condition.

Your Hepatologist will monitor your liver panel to make sure you are okay. The Alk Phos & Bibulrin (spelling?) are key markers they will look at along with Vitamin D levels.

Try to eat a healthy diet & don't let this overwhelm your life. Stress makes any autoimmune situation worse as per my doctor.

Leave the worrying to your doctors & live a healthy lifestyle.

Write down all your questions & have the doctors answered them for you.

PBC patients are more susceptible to osteoporosis so that is why you have to do one to establish a base line for comparison as your doctor monitors you.

You will be fine. Establish a rapport with your doctor. He/she will help you through this.

[JGM59]

Thank you I am trying to relax and get used to the idea of all this as well adjust my diet

[periwinkle88]

Dr. Kris Kowdley, at Swedish in Seattle, is the regional PBC specialist. 206-386-3660. I highly recommend him. Great news on your numbers going down!

[Jlruggie in reply to periwinkle88]

Periwinkle 88

How did you find a pbc specialist? I was told to have a hepatologist with specialty in pbc. I have a hepatologist and a physicians assistant who takes all hepatologist’s patients w pbc. Nobody ever said the PA is a specialist in pbc in particular though.

Jlruggie

[periwinkle88 in reply to Jlruggie]

I believe I heard about him from other PBC patients in the area. He's a gastroenterologist, but specializes in the liver. He's done research on PBC and has seen 250 plus PBC patients. (If I'm remembering correctly!)

[periwinkle88 in reply to periwinkle88]

It's possible he's a hepatologist - I'm not sure.

[Sachin1234]

You will be all right ! I’m 41 years old male diagnosed with no stage.👍🏼🙏

[butterflyEi]

Hi JGM59

Welcome to the group, great bunch of people on here always ready to help and listen. Good news that you have responded well to the URSO. I was diagnosed in 2006 and have my first bone density test (DEXA scan) this coming Friday. Good that you have a doctor who is on the case. There are a couple of bits of advice I was given when diagnosed, first try not to worry as stress is an enemy to us and secondly you are more likely to die with PBC than because of it - I don't know why but that piece of wisdom really helped me.

If you have not already done so join the PBC Foundation, free to join through the link above where you can find reliable current information and back copies of the Bear Facts magazine where there are some good articles. Also there is PBCers.org who are in America and have a presence on face book as does the PBC Foundation.

As others have said, a good diet avoiding salt and sugar helps to reduce the load on the liver and seems to be the wisdom from medical people these days.

Hope you find a good hepatologist.

best wishes

[liver-bird]

Welcome to this very exclusive club. You will find knowledge and understanding here. Eat well and get plenty of rest. Good you are responding to urso. Good luck and keep in touch. Although I live near London I feel I know Seattle due to watching so much Frasier 😀

[JGM59]

Thank you everyone I appreciate the feedback and am feeling better reading all of the encouraging responses and great suggestions. Thanks