pbc question

[Mikaela2]

Hi all ! I have very high ANA , anti centromere , high AMA2 . Fibroscan F3 fibrosis. Have normal liver enzymes including ALP ! Many years ago I had severe itching on my legs but that has stopped .. now I have fatigue. Has anybody here had similar work up ? I am completely devastated and don’t know how to handle this diagnosis

Thanks in advance

[Readlots]

Hi, what diagnosis have you received? Lots of people on here with different illnesses and experiences. I’m sure someone will have had the same. I can certainly relate to the fatigue. It’s frustrating but you do get used to pacing yourself. Have a look at Spoons Theory. Don’t Google your illness half the info will be wrong and you’ll just feel worse. The BLT website is good and reliable and their helpline is excellent if you want to talk. Any diagnosis is a big deal and takes some processing but you’ll get there. Big hug

[Mikaela2 in reply to Readlots]

Hi ! The diagnosis i have received is PBC ..

[Readlots in reply to Mikaela2]

Welcome to the club! I was diagnosed with PBC 10 years ago. It’s treatable with Urso so don’t panic. As S1LK has suggested, the PBC Foundation are great in addition to the BLT.

[Lu11]

Hi Mikaela, I’m ANA mad AMA M2 positive with normal liver enzymes. Because my ALP is not elevated, they don’t consider me to have PBC. Did the Dr. Diagnosed based on Fibroscan?

[Mikaela2 in reply to Lu11]

Well .. They told me that it is PBC .. but maybe in the future they will do biopsy to just to confirm it.. As I understand it from Dr google Urso can help but only if Liver enzymes are high .

But Lu did you get another diagnosis ? What was it ?

[Lu11 in reply to Mikaela2]

The diagnosis is that I’m positive and did an ultrasound which came back as slight fatty liver 🤷🏻‍♀️ but if my enzymes are normal nothing needs to be done. I have rheumatoid arthritis and thyroid, autoimmune issues. Yes as far as I can tell, Urso is given when ALP is elevated. The thing is there are several people whose enzymes are within normal limits but they have symptoms. I believe that in the future the diagnosis will change from just ALP numbers to a broader picture.

[S1LK]

Hi. Do reach out to the PBC Foundation. They have excellent resources to help answer your questions.

pbcfoundation.org.uk

I have PBC. They helped me a lot alleviating my fears at the beginning of my journey.

Take care !

[butterflyEi]

May I suggest that you send an email to the PBC Foundation with a copy of your blood test results. They have a help line. Details are on their web site.

pbcfoundation.org.uk/about-...

[e-mail]

[Mikaela2]

thank you soo much ! Will do!!