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[FreedomRider]

I just got diagnosed 1 week ago. Was given no info. Been reading the internet finding it terrifying! Ugh! What to do next! Anyway I have PBC. On a scale of 0-4 my scarring is 3. Having fibro scan this Friday. Feeling overwhelmed and a little panicked!

[Stub007]

I was diagnosed Stage 3, 4 years ago with much the same experience : very little information. After being my own research scientist for that period, I have concluded that the medical practices ideally should have a booklet that answers most questions to give new patients. (If you’re a reader, you might want to get “PBC: The Definitive Guide for Patients with Primary Biliary Cholangitis” by Prof. David E J Jones OBE.)

I received my diagnosis in a brief phone one evening after my biopsy. The urologist called in an Urso prescription. After I read about the disorder online, I messaged him via My Chart asking why, if it is a terminal illness, am I being prescribed medication.

He said he could tell that I had been reading about the disorder and that he didn’t want me to take it too seriously (!!). He said he had had good success with medication and that I would not die from this slowly progressing condition.

I am an 84 year old male, physically active six days a week, going to the gym and, in good weather, biking a twelve mile route. Still, I was not prepared for the side effects, including those that affect ( my own opinion) my mental acuity: I am a scholar at heart who has lost most of ability for intense, sustained concentration, over the last few years.

It’s not all bad. I do have an active lifestyle, eat a healthy diet for the most part, and maintain a fairly stable schedule, including helping the county with elections, both early voting and on Election Day. I am a regular churchgoer and choir member.

You can do the same. Reach out to me if I can be of help to you. For you to regain some feeling of confidence is very important. You will do that. I know you will. My lifespan projection is “normal,” and I bet yours will not be affected. The medication will do the trick.

All the best,

Don

[Daisy2609 in reply to Stub007]

hi

I was diagnosed 2020 with PBC with not much info. Had 2 bloods and 1 scan. The scan said f4 and no contact for over 12 months. I have my checkup next week in Leeds(uk). I like many others have googled it and I’m now scared as a lot say short life expectancy with this condition.

[FreedomRider in reply to Stub007]

Thank you so much Don!!! Our experiences are similar in how we received our diagnosis also! A quick phone call and a prescription for Ursodiol sent to my pharmacy. Of course I looked on the internet and thought I was going to die soon from this! YES there needs to be a pamphlet or some kind of info given to people being diagnosed! You have me do much relief by telling me about you and your experiences. I can't tell you how much I appreciate this!

All my best!

Brenda

[Stub007 in reply to FreedomRider]

You bet!

Don

[Sister65]

I also recommend that same book. I learned so much and it equipped me with the information to ask questions. Doctors have not been particularly helpful with regard to providing info but were better when I knew what to ask. You must try and find a doc who has treated a lot of pbc cases with whom you feel comfortable. The more you know, the less afraid you will be. I responded very well to urso.

[FreedomRider in reply to Sister65]

Thank you! I will read that book. I started urso 3 days ago and I feel like I have more energy already! Maybe it will work for me too,. All my best!

Brenda

[Stub007 in reply to Sister65]

I agree with you!

[Samanthaann]

I was diagnosed about 9 months ago and felt the same as you. I did not receive much information - a piece of paper with some PBC websites such as this one which has been great. What helped me is I looked at it like this could have been diabetes, or another autoimmune condition. I finally accepted I have it and have to deal with it. Connections such as sister 65 and stub007 are very helpful. I advise to follow them and others and read their feedback. I wish there were local groups or classes we could attend but have not found any in my area yet. Stay positive and post your questions. You will get very good and helpful response.

[FreedomRider in reply to Samanthaann]

Thank you very much!

[Samanthaann in reply to FreedomRider]

reach out anytime. It’s nice talking with people that understand what you are going through.

[CeeCee101]

also recommend Prof. Jones book, you can get electronic version on Amazon

[ninjagirlwebb]

You will be fine. My liver doctor told me when pbc is managed, pbc patients have a normal life expectancy like the normal population.

Not sure where you are located but if you have options, find a liver specialist to help manage your condition. It makes a big difference so you can worry less.

My liver specialist told me to let him worry about me and just enjoy my life. So I see him every 3 months and let him do his doctoring. Always gets back to me promptly.

[FreedomRider in reply to ninjagirlwebb]

Thank you! That helps a lot. I feel like my initial panic has given way and I'm starting to just live every day until I die, without expecting that it will be any day now! I live in upstate NY. Looking for liver Dr now. Thanks for reaching out!

[ninjagirlwebb in reply to FreedomRider]

No worries. The best liver doctors work at teaching hospitals with a GI & hepatology division. Ask your primary care doctor for a recommendation or even your insurance company.

You are not going to die from this! Especially since you will be treated. You will be fine. Just find a good doctor and he/she will take care of you.

[TanGram]

I too was diagnosed in 2020. So scared and confused by every little symptom or change in my body. Dr Google is not always up to date, I did change my lifestyle. I eat mostly single ingredient foods. Alot of fruit, unsalted nuts, plain old-fashioned oatmeal, chicken breast, veggies and 100 percent real light cheese. Sometimes a yogurt. That's it. My one bad habit is diet coke. I'm struggling with that one. Good news is all my tests are back to normal. Billirubin was a little high on my last set of tests, but I'm re testing soon. Live your life. Our goal is to die with this disease, NOT OF IT. Always reach out to this group when you need some reassuring, a question or concern. We're in this together ❤️

[Jlruggie]

don’t panic, you aren’t dead yet and you’ll get Ursodoil to slow progression of our disease. There are tons of lifestyle changes. See my reply to Tan Gran. Get a pbc specialist with a PA to talk to about options and to educate you about our disease.

I forgot to add to Tan Gran, don’t drink more than 4oz alcohol every 2 weeks. I won’t even mention that I’ve used a castor oil compress every night for the past 2 weeks. I’m in stage 3 fibroses too

Keep writing here to help organize yourself.