PBC

[GigiC]

Hi I am a 62 year old female living in Pennsylvania USA and just found out today that I have PBC. The posts I have read so far have made me feel better about this condition already, and let me know this isn't as scary as some of the Internet listing makes it sound. It's nice to know I can turn to this when I have questions or concerns.

[Oidra]

There are rather a lot of us! Join the PBC Foundation ( link at the top of the page). It is free and has the facts and stop looking at the internet and scaring yourself. PBC affects different people in different ways. I am one of the lucky ones as I am 75 and lead an active life with PBC firmly under control. I hope you will do too.

[GigiC in reply to Oidra]

Thanks, I'm definitely done with the Internet searches. I have only been feeling so tired and run down for about 3 weeks so I guess they are catching it early. They are going to do a liver biopsy before they start me on medication. It's wonderful to find such a great support system right away. Thanks for the warm welcome!!

[PBCFoundation PBC Foundation in reply to GigiC]

Hi there GigiC, thank you Oidra.

Yes, it's absolutely free to join the PBC Foundation.

As a member you will receive a patient compendium which has facts about the condition from medical, diet and living with the condition.

You will also receive our quarterly magazine, The Bear Facts. This keeps you up to date with research, developments and of course other PBC members stories.

There is a 24 hour helpline if you feel you need to talk to someone in confidence.

Best wishes

PBC Foundation

[SimbaTutor]

GigiC, Welcome to the club that none of us wanted to join. I was diagnosed a year ago and placed on urso. Once I adjusted to the meds and changed my diet to less simple carbohydrates, I began to see daylight at the end of the tunnel. I have to rest several times during the day and pay attention to how much water I drink. I still work full-time and right now I am carrying the load of my husband who had shoulder surgery three weeks ago. A year ago, I was so exhausted each day I couldn't see how I could possibly work, much less do more than I usually did. I found balance with dietary changes, learning to take care of myself (I am much better at taking care of others), resting and getting on with life. Yes, it is a scary diagnosis. Yes, the group of people here on this site are WONDERFUL and will share what they have learned as you encounter the different difficulties that come with this diagnosis. Welcome to the group!

[GigiC]

Thanks for the warm welcome. I just got done with being a full time caregiver for my mother, who passed away at age 98, so I know what you mean about taking care of everyone else but yourself. I have only been feeling extremely tired for about the last 3 weeks, so they might be catching it early. They are going to do a liver biopsy before they start me on medication. It's wonderful to find this support system on the same day I found out about the PBC. At least I have people to turn to if I have questions. Thanks again.

[kandiepat]

Hi GigiC. Im a 72 year old who has just been diagnosed with PBC, plus Sjogrens and lung disease. I was not happy about not being able to do anything about it. So, I completely changed my diet Im now gluten free, dairy free, vegetarian with occasional lapses, no drink (not that I ever was a heavy drinker_) no sugar. I have a green drink every morning with a banana and berries, I was so happy to learn this morning that my liver enzymes were all in normal range. Ive been keeping a log of everything I put into my body and its very useful. I feel as good as I can be- with a

a few things to do with the Sjogrens. I had to stop taking the Urso because of constipation but now Ive changed my diet I will try it again. thanks

[CindiA in reply to kandiepat]

Wow! I'm 61, on the transplant list, and am stage 4 ("end stage"). I'm sorry to hear of all your ailments.

I don't know if I'll ever get a transplant. The older I get, the more I feel I'd deny it in favor of a young person. Yes, I'd like to see my grandsons (2 & 4) grow up, but I'm okay with that, too.

Good luck to you/us!

Cindi

New Mexico USA

[Calogia]

GigiC - where do you live in Pa?

C.

[lclam1953]

I will turn 62 yr this month and I just found out I had PBC in April. My Dr had a biopsy done last month and the results were great. Mild inflammation with no fibrosis! they found this through a routine blood test physical that I had last December with an elevated ALP. The. He ran the AMA test which confirmed it. I didn't know squat about this disease but with the help of this group, I have become very educated. It feel great and have no symptoms. everybody is different I have learned. I have changed my eating habits since I found out and have lost 15 pounds so far. (60 to go). Losing weight won't cure it but it won't hurt either. Good luck to you and like everyone says, it's not a death sentence!

[pomice]

Gigi, I can relate as when I got my diagnosis I thought "now I know how I am going to die" and it looks horrid! I was diagnosed six years ago and my symptoms are severe hair breakage and some night sweats. I take Urso which has returned my blood levels to normal. Take courage, you can do this.

[GigiC]

I was amazed at the welcome you have all given me. At first they thought I had non-alcoholic fatty liver disease, but yesterday they told me it was PBC. I am having my liver biopics the middle of July' so will probably know more after that. I live near Harrisburg PA. I really haven't had any of the symptoms that are listed, except being very tired for the last three weeks. The itching that is mentioned. Is it all over your body, or just in one area? It's wonderful to find such a great support system!!

[Mimigal]

I'm 67 and was diagnosed 9 years ago no symptoms, not taking any meds, feel great so far. Quit having my annual margarita, no more wine, stopped eating meat, stopped dying my hair. Best of luck to you. Liver biopsy showed PBC after my annual blood work.

[scthompson in reply to Mimigal]

So the only thing you did was stop drinking alcohol and go vegetarian and you’re cured? Regarding the hair dye; did you think that was a contributing factor???

[ninjagirlwebb in reply to scthompson]

There is no cure for pbc.

[kandiepat]

A girl after my own heart! Im 72 and Im doing the same as you. Im glutenfree and dairyfree as well and I feel really good except for my fingers aching, My last bloods came back within the normal range so I know Im doing something right.