Diagnosed with PBC, July 2016

[KansasJan]

After having elevated enzymes for at least a year and a half, I saw a liver specialist on July 6th. I was leaving for a three week vacation in Hawaii the next day. They did blood work and scheduled an MRI and liver biopsy for the day after I got back. The nurse notified me the next week that the blood work identified my diagnosis with PBC and the doctor wanted me to start on 1000 mg of Ursodiol asap, so they sent a prescription to a pharmacy in Hawaii. They cancelled the MRI, but still wanted the liver biopsy. Read all about PBC and it really was kind do scary! With having jet lag and then the biopsy, I was washed out for the first week. I seem to be having some days of fatigue now. I did not have any symptoms besides the enzymes. It has helped to read the posts from all of you that have PBC.

[butterflyEi]

Hi Kansasjan

Welcome to the group. Not a great way to find out you have PBC. Hopefully you may find the fatigue reduces once your body becomes used to the Ursodiol and you have recovered from the shock of diagnosis and the biopsy. I have had a diagnosis for over 10 years now and found that once I had accepted the diagnosis I settled back into living my life.

If you have not already joined the PBC Foundation, it is free to join, then I think it is worth it. You can have the Bear Facts magazine sent electronically. The Bear Facts magazine has some very good articles and back copies can be viewed on line in the members section.

I am guessing you are in America and if you have not already found them PBCers.Org based in the Texas area have a presence on Face Book and on the web. They are a very proactive group:-

pbcers.org/

Hope this has been of some help.

best wishes

[KansasJan in reply to butterflyEi]

Thank you for the information. it really helps to hear from people who have had this for some time and how they are managing it!

[Michiganpbc]

Hi I recently got diagnosed stage 2 I am on URSO two months now having some pain bloating heart burn sore throat and some other new side effects so my doctor cut the dose by 1 pill feeling better now I am very tiny and react to most meds so this could be what happened, I am here if you need to talk as we are both new to this I am still trying to wrap my head around the diagnosis very scary, I can say this has been the best place for information and support hang in there and take it day by day as I find this has helped me!

[KansasJan in reply to Michiganpbc]

I have looked at several other sights and have found more info here. Glad that you are feeling better.