PBC

[gwillistexas]

I was recently diagnosed with PBC. I was shocked & scared. I have never had a major health issue. I was referred to a GI who prescribed Urso. I began taking it Aug 2 & developed slight itch. I thought nothing of it until I developed hives. So, as of Friday, I was taken off Urso & GI is trying to get me on Oclavia. This is a very expensive drug, upward of $6,000 on GoodRx. Dr is trying to get help on this. Urso seemed to be ridding the slight pain so I hate I wasn't able to take it. I am scheduled September 15th for fibroscan to check ducts. Ultrasound of liver itself, was perfectly normal. I am so glad I found this site. We all need support.

[Nanajo1962]

I was recently diagnosed myself. Like you.. freaked me out! I am adjusting and you will to.. we will be here for each other....❤️

[gwillistexas in reply to Nanajo1962]

I have been on statins 4 years for high cholesterol & never had elevated liver enzymes. I was sick in December with upper respiratory infection & was given a steroid inhaler. Used it for 6 months. As soon as I got my report on enzymes I stopped the inhaler. I research everything & had found that this steroid inhaler could cause liver problems. I believe & always will, this steroid caused this problem.

[Suekloo]

I was diagnosed in 2012 with cirrhosis, during a hospital stay last year they said 2/3 of my liver is cirrhotic. Yet, my blood work is nearly in normal range now and has been for about 3 1\2 years now. At first I was on Urso but had terrible side effects so I was taken off.

The biggest problem I was having were varicies; so I had endo every month for a while until I had a major bleed during a banding, and partially due to Scleroderma in my esophagus. When that happened, I spent 9 days in a coma, 17 days in hospital over all, and had a second life threatening bleed three days after the first one. At that time, they put a shunt in place, they call it T.I.P.S. procedure. It will be a year on the 23rd and no new varicies! The shunt reduces the blood pressure but does reroute 20% of the blood (for me) that does not go through the liver to be cleaned. So I take Xfaxim to avoid ammonia build up in brain.

I don't mean to scare you, some people never advance, some do so quickly, but in general seems many people live a long life even with it, just not as active as one might like to be. The really good news is the awareness now in the medical field compared to just 5 years ago is astounding and my HEP thinks if Urso helps, it is best if started really early.

So now the worst thing I continue to experience is extreme fatigue, I am now taking Modifinl, which is not covered by insurance for PBC fatigue, but it does help. I found it at Costco for $35 vs $800 at other pharmacies!

I do not take Ocaliva, because my Alk Phosphate is normal. If that is really high, then your insurance should cover. There is help from the drug manufacturer as well, if I am not mistaken.

Check out this website it has a ton of information:

pbcers.org

And their Facebook support page:

facebook.com/groups/PBCangels/

I have met many wonderful people on that page. Linie who lives in Texas started these when she was diagnosed in the 90s. They are mostly women since it seems 90% of PBC patients are women. But there are also some amazing men too. Patients from around the world.

Take care of yourself and enjoy life to its fullness, as you are able!

[gwillistexas in reply to Suekloo]

Thank you. Seems you had some bad things happen. So sorry, but glad you are doing much better. I appreciate the info.

[Sachin1234 in reply to Suekloo]

Very bone chilling and hopeful story👍🏼.. I want to join Facebook pbc group but I'm worried about my privacy!!

[Laj457]

I am in east Texas as well . Who do you see for your PBC?

[gwillistexas in reply to Laj457]

I see Dr Aaron Duvall at Christus Trinity Mother Frances