PLEASE HELP! Positive then negative AMA

[Hellcat79]

Thanks for allowing me to join your group. I have a few questions for members. First of all a short back story. I'm 43, 6 months ago I was diagnosed with Stage 3 fatty liver with NASH. I went on a clean diet lost 50 pounds and reversed my condition. The same week I was told I reversed, I was diagnosed with PBC. What a blow that was, I was crushed. I was diagnosed solely on a positive AMA. My liver numbers are perfect and ultrasound and fibroscan are all normal. My doctor started me on URSO. Is this standard treatment with good #'s and scans and no symptoms? What I am reading though is positive AMA doesn't mean you actually have an active case of PBC ? That you can be AMA positive but never develop PBC or progress? Has anyone here never developed PBC or remain in the early stages? Is a positive AMA a guarantee you will develop PBC? Of course I will be discussing these questions at my next appointment with my Hepatologist, but it's nice to hear others experience. After months of being terrified of NASH I was looking forward to living a normal life with my new healthy habits and got hit with this news. Now I'm more terrified than ever. This new diagnosis has been hard on my 14 year old daughter as well. It's hard to calm her fears when I am scared of what my future holds. I also suffer with painful Endometriosis so this just feels more overwhelming having yet another disease. Thanks in advance.

[Tcmb50]

Hi, I'm sorry to hear that you've been having a hard time. I found myself in a very similar situation just over a year ago when I discovered that I have positive Ama's. I too have normal Lft's and had normal ultrasound and fibroscan tests. I have just had my latest hepatologist appointment where nothing has changed and he doesn't want to see me again for a year. He has said from the beginning that a positive Ama result does not mean that I have PBC. It also doesn't mean that I don't have very early PBC or may develop PBC in the future. He actually said it was "up in the air" for me and he could only say that there is no evidence of clinical disease as of now. In the UK , Urso is not prescribed if your Alp is not elevated . It is simply a watch and wait situation. I have read other similar posts to yours from the US where people are given Urso immediately if they have a positive Ama. I would love to know the reason for this difference in medical approach. I have also read posts on this forum from people who have had Ama's for many years and have never developed PBC. I suppose we have to try to live our lives happily and hope to be one of the lucky ones. If we do develop it at some stage in the future at least we already know what we are dealing with , have caught it early on and don't have to go through the long and difficult journey to a diagnosis that many have faced. I too was devastated at the start but I can assure you that you will come to terms with it. I still have times when I feel sad and worried. I too have a young daughter and son. However I have realised that this is a disease that can be treated and many people live long and happy lives with it. At least we have a heads up to live healthily and protect our livers. You have clearly worked really hard to do that with your amazing weight loss. I hope I have helped to ease your mind a bit. Take care.

[jpickle]

I have had pbc for 21 years. I have been on ursodiol the whole time 500 mg 3 times a day. I’ve been doing fine with no problems. I went off ursodiol for a month because it went up to $1,000 a month. I started itching but that’s it. I started back when I found a lower price and have been fine since. It sounds like you caught it in the early stage . I was sooo scared at first also. You may never get worse or die from it so just live your normal life and enjoy your family. I’m 66 and still doing fine. Don’t have the best diet so your already one up on me!