I am a 56yr old female diagnosed with PBC six years ago. I had a severe reaction to Ursol the first time I tried it, waited a year and tried it again but was unresponsive to it. I started Ocaliva 5mg for three months and since my alkaline phosphatase remained around 300 my doctor increased the dose to 10mg. My alkaline phosphatase continues to remain around 300. I am wondering if I am benefiting from this drug and /or how long I can remain in the 300's before I start seeing irreparable liver damage. Also since I have started Ocaliva, I have had a rapid increase in my otherwise normal cholesterol. This could be coincidence as this is part of the progression of PBC, or did the Ocaliva trigger the high cholesterol levels. Appreciate any feed back, especially from patients who can only singularly take Ocaliva. Thanks!
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Q8Cooper
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In addition to bloodwork, an important component of diagnosing and monitoring staging of PBC is so-called "wave ultrasound" or ultrasound with shear wave elastography. It shows if you have scarring or fibrosis in your liver. Even if your Alk Phos is elevated, but, the ultrasound shows that you have no scarring, you are in a good shape. I had initially the liver biopsy and then one wave ultrasound, 6 months later. You need to talk to your doctor, go over your ultrasound results to better understand what's happening. Some are recommended to have the ultrasound twice a year and bloodwork every three months, others may go with ultrasound once a year and bloodwork twice a year.
Hi Aigra for your feed back. I first knew something was wrong when one of my doctors did routine LFT because of a medication I was on. They came back elevated and with a scan I was diagnosed with NASH. I underwent bariatric bypass to loose the weight to take the stress off my liver and requested also a liver biopsy since I would already be under, which confirmed the PBC and auto-immune hepatitis. I am having routine ultrasounds but I don't know if the are the "wave" you speak of. I will ask. Thanks for that tip. So far no cirrhosis. But I have granulomas and sarchoidoisis (sp?). I was having blood work every three months but will have it every six months now. So it looks like myBC doctor is spot on with everything you suggested. I still am confused that when Ursol failed to reduce my Alk phos he discontinued it and When Ocaliva also is failing to lower my LFTs, the same doctor is telling me no doctor in his right mine would let a patient with PBC go untreated. He said your are either an Urso girl, an Ocaliva girl, or both. Thanks on your feed back. It helps. If you happen to hear of any PBC patients that their LFT do not respond to either Urso or Ocaliva - feel free to let them know about me. Best of health to you!
I am taking Urso, but, my Alk Phos is still elevated. Urso has helped to bring GGT back to within the normal range very quickly. But, alk phos is stubborn. It inches in, in the right direction, but, still, it is well over upper limit. My doctor says that Alk Phos is the toughest one to improve and it may never go back to normal, even on Urso or Ocaliva. There are very few options to treat PBC and I feel that we should use whatever options are available to us, whether it is urso or another drug, whatever we can successfully tolerate.
Hello, I just recently started Ocaliva on June 9th. The Urso was working great in the beginning, diagnosed at stage 2 in 2012, then stopped doing its job about a year and a half ago. I progressed to stage 4 with cirrhosis & small varicies. My ALK Phos was at 386 before the Ocaliva. It's now at 300. I think that because of the PBC these numbers stay a bit elevated. When they found the PBC in 2012 those numbers were in the 2000's. That's insane isn't it. My cholesterol is fine, so far, so I wouldn't assume that the Ocaliva is the cause of your high cholesterol. Or, it could be the difference in how you've reacted to it than compared to how I've reacted to it. It seems we all handle things differently with PBC. I hope this helps a little. On the other hand, stay strong, be positive, & try to live life to the fullest. Even though some days it seems next to impossible😒.
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Maybe I shouldn’t post OCALIVA side effects. I’m hoping everyone here knows them
More confuse than ever!
PBC
Trip to West Africa 
