Reaching out

Reaching out

Good morning all, I am new to this. I do nit use social networking sites at all generally. So if I go on a bit & bore you to bits I apologise in advance. Hopefully I will get the hang of it quickly.

I was diagnosed with PBC in August 2015. I have had all the scans except the Osteoporosis which I am having today at 3pm, had colonoscopy & OGD, & last but not least the & the icing n the cake ' the good old Liver biopsy'. Anyhow, after 1yr & 7mths of taking Ursodeoxycholic I was informed by my specialist that I am not responding to it also the Liver biopsy showed that I have infact already got scarring on my liver.

I am now in panic mode wondering how aggressive this PBC actually is. I was wondering if any of you guys out there are or have experienced the same problem with not responding to the Ursodeoxycholic & what was your solution. I am applying to take part in a clinical trial fir another drug called Obeticholic acid. Would appreciate any feed back.

Kind regards

SALLAM.

4 Replies

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  • Hello Sallam.

    I have onlyu ever had a scan pre-diagnosis of PBC December 2010. I am in the UK and due to starting to itch intensely early 2010 and then it being found I had higher than normal LFTs (liver function test) plus the AMA antibodies I was diagnosed with these 3 factors and started urso. I also have blood checks that is GGT which apparently is some indication of liver inflammation. My GGT as expected from 2010 was higher than normal.

    My LFTs and GGT have never returned to normal in the last 6 years but they did drop and are still holding on at a certain level.

    I am almost 53yrs old now and take it I have just gone through the menopause after starting 4 years ago with an erratic cycle. (Thankfully I've not really had any symptons of this except hot flushes at odd times.)

    Now I thought the trial for the obeticholic acid had ended. I know in the US it is being marketed as OCA and I think brand name Oclivia but I am sure someone on here can fill you in there as I have read some are now taking it. It isn't available as yet in the UK where I am.

  • Hello Peridot. Thankyou for your communication. There is a trial for Obeticholic going on at The Free Hospital in London. Thankyou for sharing & I wish you all the best.

  • Hi Sallam,

    I was diagnosed June 2015. I have been on Urso since. August of last year my Gastro put me on the Ocaliva because I wasn't responding to the Urso. Since I have been on it there hasn't been any change. I am now being sent to another specialist. I have heard several who are taking the Ocaliva are doing very well. I have had liver biopsy, upper scopes, ultrasounds and am having a colonoscopy in April. I have the itch and fatigue. I hope you get the Ocaliva and all goes well. Keep us posted.

    Lisa

  • Hello Lisa, Thankyou for your response it was very helpful. I will certainly be asking my specialist about the drug Ocaliva. I do not understand why this drug has not been suggest d for me. I was informed that here was nothing else I could take . So pleased that I joined this group.

    Regards,

    Sallam

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