Reporting in.

[Jeanb47]

Hello. I thought I’d post results of my appointment with specialist. Blood tests. ALP- 245, bilirubin - 16. AST & ALt both marginally elevated. Fibroscan is 9.5 so no change there.

I continue to have substantial pain in my right upper abdomen which comes and goes. My specialist is ordering a colonoscopy, gastroscope and a test for bile mobility.

Exhaustion is my norm but I have very little itching. So I guess I’m holding the course. I’m not on URSO because I had very bad reaction and not eligible for Ocaliva, so waiting for other clinical trials that I may be a candidate.

Thanks for all your posts. Helpful to know one is not alone and that a lot of symptoms are common to us all

You all have an awesome day.

J

[Ktltel]

Hello,

Sorry your having RUQP. It's great that your Fibroscan showed no change though. Yahoo!!

Why haven't they tried Ocaliva since you can't take URSO? Also, I noticed I get RUQP when I eat red meat or too much fatty stuff.

Hope you can find some relief somehow. I know that feeling for sure. ❤❤

Keep on keeping us posted. We care!! None of us is alone.

Stella

[EileenUSA]

I hope the tests give some direction. Interesting to hear that there is a bile mobility test.. is the Ocaliva not approved yet in your country? Keep us posted. Stella's right-- we care!

[Jeanb47 in reply to EileenUSA]

Yes. It’s approved, but very expensive and I’m not eligible because of the complications I have. The bile motility test is HIDA scan.

Just got a notification that it is not happening until August. That does not feel good to me because of the pain I’m having. 😞

[butterflyEi]

Hi Jeanb47

I hope your further tests can give you some answers. I think there has been some talk of using fenofibrate for some, this is a cholesterol lowering drug. Perhaps someone on here is on it and can make a more educated comment. Might be worth an ask.

best wishes