Pbc? Or not?: Here’s my latest story: I was... - PBC Foundation

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Pbc? Or not?

Pamela4475
Pamela4475

Here’s my latest story: I was diagnosed with PBC in 2017 and put on urso immediately. I had the standard 2 out of 3 positives to make a diagnosis. Elevated alk phos, positive AMA2 but never biopsy. After 3 years of doing proper liver diet healthy living my new liver specialist retested my AMA2 and it was negative. He took me off urso and said let’s recheck all labs in 6 months.... again all liver enzymes normal and AMA2 negative. So now I have been told was not pbc but damage from Lipitor as I took it for years. I am now on Crestor with no issues.... he will continue to see me and my regular internist will do labs every 6 months. I am happy but just what to think? My previous doctors did exactly what they were suppose to do and I think the urso helped clear my biliary tracts in the liver... time and labs will tell. It’s hard for me to flip back as I did so much study on pbc..... no one to blame.... just took 2+ years for liver to heal itself after Lipitor. This group helped me through some dark times and I’d like to stay if that’s ok. ❤️❤️❤️ to all here

28 Replies
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Hi Pamela,

Thats great news. 😊

I do understand why you are feeling a bit blah about it as well. It takes us alot to accept or diagnosis and get our head around all the data, to then be told that after all that you dont have it will be a shock. Its okay to feel a bit blindsighted just now. The good thing is that the doctors are not just letting you go and you will get regular checks to make sure that they are right this time.

Oh, and please do stay, it sounds like you have gained alot of knowledge during your journey which could be helpful to alot of people. Take care xx

Pamela4475
Pamela4475 in reply to Angel46

That’s exactly how I feel about it but could not put it into words... thank you ❤️ I love this group and would love to stay! Big hugs

Hi Pamela, Would you be willing to detail the healthy liver diet that you adhered to? It would be greatly appreciated. My liver enzymes have stabilized to normal range while on Urso but my AMA remains high. I am so happy that you no longer have to live with a PBC diagnosis. Wishing you great health and thank you for your post. Michele

My liver specialist said: must avoid sugar at all cost except on special occasions and I could tell by my numbers when I did eat it. Low fat ( egg whites. No red meat) and low carb.... I found some low carb bread and egg whites have protein but no fat and very low calorie. I eat chicken turkey and fish. Premier protein drinks for snack and no more than one serving of fruit a day. I oven roasted bell peppers carrots celery onion small amount of potatoes with seasoning and it taste very good.... healthy eating in that fashion and exercise daily and he said drink water. How to figure water is 1/2 body weight is how many ounces daily.... example 170 lbs divided by 2 is 85 ounces.... I drink 17 ounce bottles so 5 bottles of water a day.... do not overdo but keep flushed out.... make sense? I’m retired nurse and I see you’re a nurse too....try turkey meatloaf, baked chicken and fish..... just need seasoning

Hi Pamela, Thank you for the prompt response. I pretty much consume the things you mentioned except I will switch to egg whites and look for low carb bread. I have to admit that I love to bake and therefore enjoy one piece of dessert daily. I need to work on that. What I don't understand is how my liver enzymes returned to normal on the Urso but my AMA has never normalized. In fact, my AMA has always been quite elevated and the number has NEVER changed. It doesn't go up or down. Do you have any idea why this is?

From one nurse to another, thank you kindly!

Thank you for sharing this🥰

Big hugs Gail.... you have been such a support and now a dear friend to me

Thank you Pam. You have always been an encouragement to me as well as a sweet friend. 🦋

Good news. Don't feel you need to leave the group your knowledge is valuable an and may help someone in the future. Hope by the time you read this your day will be lighter.

Best wishes

Ty dear heart

I was Ama positive when diagnosed and put on Urso. The three next years I tested twice negative for Ama2 and my numbers stayed bad. New specialist did liver biopsy which was inconclusive and took me off Urso before the biopsy (to get more clear inflamed results huh). Kept me off Urso for three month and numbers skyrocketed.

Changed specialist again who concluded Ama negative PBC and put me on Urso plus Bezalip which stabilizes the numbers. Very happy with the doctor I am seeing now.

Everyone is different. Very good they keep an eye on you with regular blood test and fingers crossed you have no PBC and please do stay on the group! Good luck.

Pamela4475
Pamela4475 in reply to martinap

I had a negative fibroscan but my original doc did not have a scanner or believe in them.... if my pbc symptoms s reruns I’m back to liver guy early.... another fibro scheduled next year .... fingers crossed

Iam so so happy for you! What a relief!! Great job taking such good care of your liver.

Now that your so knowledgeable spread awareness! Promote organ donations!!!

Pamela4475
Pamela4475 in reply to Lm205

Will do

So glad you don’t have PBC but I hope you stay. You can still help people with info and support.

Pamela4475
Pamela4475 in reply to Wocket

Ty

What is "proper liver diet" that you mention. I would love knowing it. Thanks and please stay in our group.

Pamela4475
Pamela4475 in reply to Texasliz

Low carb, no to little sugar and low fat... protein is no problem... doctor said I could do keto if I wanted

Texasliz
Texasliz in reply to Pamela4475

I do low carb, no sugars, medium protein and high fat. Kind of a keto diet, I think. Just stay away from white foods altogether. Thanks for your quick reply and best of luck to you, Pam.

Pamela4475
Pamela4475 in reply to Texasliz

Ty.... best to you and I’ll be seeing you around 😊

Pamela4475
Pamela4475 in reply to Texasliz

Although keto is too much fat for me .. I kept to low fat 😊 also cholesterol problems go with liver issues

So will you please clarify, even though you were kind of misdiagnosed initially, you nevertheless think the URSO helped cure your liver of the damage from lipitor?

Well if it helped kept my biliary tracts get open... my biopsy had I had congestion in my liver biliary tracts

Okay, thank you!

Wow! That is so lucky! I bet it was kind of a relief! That is so great! I have been trying to cut back on sugar...I know it's not good for us. I'm glad you're not going to leave us. I enjoy reading your posts.

Pam

Pamela4475
Pamela4475 in reply to 4pjx__

Ty dear..... I found some excellent things bc I love my sweet stuff too..... Atkins endings answer to m&m and Atkins Ariel nut roll.. taste just like a baby Ruth.... both are easy on carbs... not all sugar free is low carb.... also fat snax cookies.... keto cookies

AMA becoming negative as a response to Urso is a common thing.

1) it does not mean you are cured

2) it does not necessarily negate your PBC diagnosis

3) it dies not mean stop taking Urso

If you are in any doubt, please contact us directly.

Pamela4475
Pamela4475 in reply to PBCRobert

AMA negative several times after stopping urso for greater than 6 months.... originally I had only elevated enzymes and ama barely positive at 28.3.... first test was 22.0 all subsequent test have been less than 20. Second liver specialist thinks it was never pbc.... damage from Lipitor most likely. I know there is no cure for pbc... thinking misdiagnosis

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