Hi all,
Been on URSO since June as although my liver function levels immediately decreased,I still have ALT of 400+.
My consultant has just put me on 200mg of Fenofibrate daily which is making me feel so sick mid afternoon 😟
Just wondering if anyone out there shares the same thing as me and were the results worth the sickness. Is there any trick to stop the sickness?
Also being referred to specialist at Kings Leeds next month.
Xx
Hello Starfish72.
Are your bloods coming down each check? Mine started to drop pretty good in the early days of taking urso (diagnosed December 2010 and started urso). I think mine were heading to the 500 mark, one of the ALP or ALTs. I'd have to look back but not got results with me. I know my ALT and ALP are like see-saws, bounce up and down against each other every blood check. My current ALT is just over the 200 mark but it has been higher.
I can't say for definite regarding your result but if they are coming down each check then I am sure a doctor would wait until you have hit the annual mark of taking urso.
I only take the urso so don't know what Fenofibrate is. On looking they are to lower fats in the blood but they might be used for other reasons as some are (ie urso was originally developed for cholesterol formed gallstones).
Nausea can be part of having PBC apparently. I do of a rare occasion feel a bit nauseous and I find it is in my case due to not eating or being empty. I have found this first thing of a morning after not eating from around 7p.m. previous night, up and down all night fidgeting due to the itch of PBC and then come morning I feel like I am starving but at the same time get that nauseous feeling that does go away after I've eaten.
Might be worth your while trying to eat little but often and seeing how that is.
This PBC seems to affect us all very differently from the bloods, how we are with the urso and also symptons. A lot of us do share the same common 2 symptons, one or both, that is the itch of PBC or fatigue.
Meanwhile why don't you start jotting a few things down in preparation for when you see the consultant. Easy to forget things that are important to you when you go of which your doctor might not even have asked or thought about.
Please post at a later date to say how you got on.
I'm considered a non responder to urso as alp came down initially but stalled at 300 where they remain . Wasn't offered any ther meds as dr felt the side effects were not worth it. Off to a referral at liver clinic to see what they can do. Hoping there's a trial I can get into. No nausea ever. Knock on wood. I am in Toronto.
Starfish, fenofibrate had same side effects for me. Now hepatologist is considering Ocaliva if I don't have auto immune hepatitis. She won't tell me over email what treatment is for AIH, have to wait till Thursday. Does anyone have AIH?
Jlruggie
Hi, what is Fenobrite and AIH?
I am on Urso 600mg and now also Ocaliva. My numbers went down another 50 points ALP after being on Ocaliva. I have been on Ocaliva for 4 months. The only side effect for me is itchiness at times. It was worse in the begininning. It has improved. I will stay on Ocaliva and hopefully my numbers will reach the normal range. I read somewhere there is another drug currently being tested for PBC and no itchiness as a side effect. I don't remember the name though.
I started on just URSO, not all values were ok, so a year later I got bezafibrate. Now all values are ok. Since bezafibrate and fenofibrate both are used as complements to URSO, maybe you should ask your GP to try that instead.
Are you on both meds at the same time ? I've never been on the Feno one
Yes both together. URSO wasn't bringing inflammation down.
Ok ... I'm now on both urso and prednisone so I'm not sure how well the urso is even working anymore ... because with a lower dose of prednisone , I'm back to itching etc ... are there many side effects with Feno?
I think itching can worsen but I itch in the evening all the time. Headaches are also a side effect.
Hi, I was diagnosed with PBC last summer by a gastroenterologist. He put me on URSO, and also Zoloft for depression. When I changed to a very well known hepatologist he told me coincidentally he prescribes Zoloft for itching. I had mistakingly thought the URSO had relieved the itch. Definitely worth trying. I dont itch at all anymore.
oh okay. thanks for the info 
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