Well, my GI himself, called me Monday. Got the impression he wasn’t too happy with my questioning dosage. So, he is bringing me in this morning to meet with his assistant so I can lay all questions on the table. I’m ready😀 hopefully, I will be more st ease & stop all the worries.
Oclavia : Well, my GI himself, called me... - PBC Foundation
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gwillistexas
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Great to hear. I’m sure you have done this but write down your questions! Look forward to hearing about it
Yes ma’am, I’m ready 😜. Let you know. About to leave for work in about 40 minutes but I’ll be back with you this evening. 😊
His assistant is a lady. Been with him 20 years. Should be easier to talk with her.
Good deal. Ask away... Please come back and share with us. He works for you, so does his nurse. ❤ Hope everything goes good.
Stella
My visit went very well. This nurse practitioner is awesome. She spent 50 minutes with me. All the questions I was going to ask, she answered before I could ask. She gave me a book on PBC & a copy of my fibroscan. I am stage 2, asymptomstic, no scarring 😀
I am having lab Friday morning & will have them once a month for 2-3 months. Will follow me closely to see if Oclavia working. Continue vit d & get lots of sunshine. For now, not asking me to go fragrance free with body washes, etc. as far as hair color, she has seen no scientific evidence against it. This was the visit & info I’ve needed. I may think of more later. This girl is happy🤗👍😀
Gwillistexas,
I'm so happy you got all your questions answered. She really sounds like she spent good quality time with you. 🙌
I have a question. How is it you are in stage 2 but have zero fibrosis/scarring? It's a bit scary. Could I be asymptomatic and actually be further along than they think? What are they staging you by?
Stella
Thank you. I’m away from the house but be back in few. I’ll tell you what it says. Wish I knew how to take pic & post, but I don’t.
Fibrosis is different from scarring. This is what it says :
Stage2/Asymptomatic...continued inflammation that may cause scarring in bile ducts. AMA positive. Abnormal liver function tests (ALP may rise)
No symptoms. I have info for Stage 1 - Stage 4. Does that help?
Thank you Gwillistexas,
I think I understand. You have to be early stage 2.
I'm AMA positive and raised alk-phos only. All other LFT's in normal range. Biopsy this past February showed mild fatty liver. He says I'm early stage 1.
Guess I'm questioning everything cause I'm really not sure how much my own hepatologist knows about PBC. Just dotting my I's and crossing my T's here. Thanks.
Stella❤
Fibrosis is scarring.
Thank you for this! I was wondering what it meant. I have lots of scarring. No idea what stage I am and have not heard the word fibrosis before. At first, my family doctor accused me of being alcoholic (new doctor). I kept pleading with them to look further. Later I found out the ultra rude resident doctor wrote in my file that I consume 25 beer per day. lolol
Oh, that’s awful! All findings tell you PBC is not the same as Cirrhosis. That’s why it is now called Primary Biliary Cholangitis. If I understand correctly, fibrosis applies to our bile ducts. If too much scarring in bile ducts, so the bile isn’t able to pass through, it causes more damage & hardening of the liver. But we all understand, once the liver suffers from too much scarring, it is then Cirrhosis. I’m fairly new with PBC, but I’m trying to understand more each day.
This site offers helpful links as well as liverfoundation.org. I research Mayo Clinic as well. Keep researching & you will find valuable & helpful info❤️
The only physical symptom I have is mild fatigue & slight twingy pain on right side. She said fatigue is usually one of first symptoms.
Gwillistexas,
That's exactly what I have too. But the pain is intermittent.
Stella ❤
Yes mine too. Comes & goes. 😊
On the copy of my fibroscan, my GI wrote “evidence of mild fibrosis “. My E(kPa) was 8
This booklet has a PBC support page. PBC Foundation is listed👍 she was pleased that I’m a member.
in reply to Ktltel
Kitel, you ask the question "Could I be asymptomatic and actually be further along" - in the "Compendium Final Draft" (2017) it is noted in the "Symptoms" section (page 6) that "Severity of symptoms does not correlate with liver biochemistry or with histology.", so yes, there is always the possibility that any of us could be further along than we're thought to be. If you haven't got this publication (available to all members of the PBC Foundation) I would advise you to download it - it contains a wealth of information.
Also I'm going to post a link to the 'pbcers.org' page describing the four stages of PBC:
For me, knowledge of something gives me a semblance of control over it.
Hope this helps your understanding.
Di
Ktltel in reply to
Thank you DianneS,
I'll definitely download it. Back in Feb I had an ERCP. They actually scoped me and looked at my bile ducts and cleared some sludge out of one they had thought was a mass that was showing up on an MRCP. Anyway, between that and the biopsy is how they staged me.
Do you think even an ERCP isn't definitive enough? I'll have to wait until Dec. for the fibroscan.
Thanks,
Stella
in reply to Ktltel
I'm not sure what an ERCP is, as I haven't ever had one, I have only had two biopsies, one fibroscan, and numerous ultrasounds. The two biopsies were performed 28 and 23 years ago (results approx. Stage 2), the fibroscan was done about three years ago, after an ultrasound showed extensive cirrhosis, fibroscan result was 30, I now have an ultrasound every 6 months, and the other tests they perform once we reach cirrhosis stage.
As far as I'm aware fibroscans are really only useful if you have developed fibrosis (hence the name) or cirrhosis, as it measures the stiffness of the liver - mind you, technology moves so fast these days that perhaps fibroscans may be able to check things out at a cellular level, I don't know if that is the case now though.
racgp.org.au/afp/2013/july/...
PS: I just 'googled' ERCP, so I now know what it is, but I can't make a judgement on it's reliability - that's a doctor's call.
Di
gwillistexas in reply to
Yes that’s true. Symptoms do not always indicate severity. I have the PBC booklet from my dr plus my email archive is loaded with valuable info. I’m a big researcher.
gwillistexas in reply to
This is a very good article thank you for sharing🌷
in reply to gwillistexas
my vit d just came back low for 2nd time im with gp on wed to discuss x
Hope the meeting went well and your questions are addressed!
Yes, it was great. If you’re following ktltel, I’ve just posted reply to her. If you don’t see it let me know😊
No scarring great news!
Yes ma’am. I understand there is inflammation in bile duct(s) with fibrosis , if I understood correctly, that’s what they try to control so it doesn’t scar. Hope you’re feeling well🌷
Yes it can be. I don’t doubt I have mild scarring in duct(s), but again, the booklet is published by livingwithpbc.com. I am only going by Stage they say I’m at, low end f2 which goes along with this booklet. From what she told me yesterday, according to my fibroscan, I may have just crossed from f1 to f2. So again, Stage 2/asymptomatic is , continued inflammation that may cause scarring in ducts. All info is different. All drs are different & we are all different. But one thing for sure, were all going to keep fighting & not let this thing bring us down😊
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