worried no medication will help

[Lena2011]

hi my alp levels r still 529 after being on urso for 1 year. I’m so worried that no medications for work too get my levels normal, has anyone else had trouble getting there levels down too normal? Many thanks

[Abby_green]

I Didn't respond to urso. Took me four years with max dose+bezafibrate and inly now its getting better...

[Kieraferret]

I was the same , I was on urso for 10 years with hardly any improvement now I’m on 10mg of Oclavia and now my alp is 299 from 599 .

[Lena2011 in reply to Kieraferret]

ohh wow 10years 😳 I’m worried it’s still so high after a year, I’m so glad it’s now starting too come down 🙏

[Candy12]

Maybe have a discussion with your consultant about adding a second line therapy.

My own levels although very good fluctuating at 180/250 for about 8 years on URSO, five years ago I had the discussion with my doctors and decided to add Bezafibrate to the regime so now take both.

My numbers have all been in the normal range ever since. So well worth having that discussion.

[gwillistexas in reply to Candy12]

I’m glad to see you mention Bezafibrate. I have been asked if I want to participate in the study. Ocaliva doesn’t seem to be working as well now for me. I’m a little cautious about joining the study. Have you experienced any negative effects with it? I’m happy it’s making things better for you.

[Candy12 in reply to gwillistexas]

I had a few days feeling a bit dizzy at the start if I remember correctly, but I remedied that by taking at at night and with food. I always seem to fair better with any medication if I have it with food. Even URSO, I still have to take it with a meal.

I was monitored closely for the first 3 months to make sure it had no other unwanted affects, but all been good. It worked in the first 3 months and my ALP went down to 96. Its been around 89 now for a number of years.

I’am in the UK so I was prescribed it and didn’t need to do it on a study or trial due to having slightly high cholesterol, which is what it was first used for before statins became available.

The only reason I didn’t go for Ocaliva was it ‘was said to have the side effect of itching in some people’ and given I didn’t itch I didn’t want to tempt it. I still don’t itch and for that I’am grateful.

Hope that helps, on a study you will of course be monitored very closely as well.

[butterflyEi]

It is possible that your specialist will add in another second line treatment as mentioned by the other two contributors.

Although there is no specific diet recommended for PBC keeping a healthy weight is helpful, cutting out any unnecessary sugars and keeping salt to a minimum is useful. Avoiding any processed foods also reduces the amount of preservatives etc that the liver has to cope with.

If not already a member join the PBC Foundation, free to subscribe. Here you will find up to date information, you may also like to listen in to their Q&A's with a specialist generally on a Thursday at 2 p.m. on Facebook or in click meeting through their website. The PBC Foundaiton also have a helpline if you need them.

[LindaVillanova]

Hi Lena

I was also a non responder to urso and after a year or so was referred to the Liver clinic (I’m in Toronto area).

Added Ocalivia, 5 mg, then went up to 10 mg (max). ALP dropped but not normal (around 240). A couple years later started to climb again so added a 3rd line, bezafibrate, every other day. Better but not normal. Changed that to everyday a few months ago and finally after 7 years I’m in the middle of normal range (120). Fingers crossed it holds, but if not there are other drugs.

Only side effect was a bit of nausea and if I ate more it subsided, now no nausea.

Stay on top of it with your Dr. Mine was happy with 240 for some reason, went on mat leave and her replacement called and said your numbers are too high let’s get it to normal. Bless her!

[Liz_K in reply to LindaVillanova]

Hi Linda, I was just reading your post and its great to know that all is going well for you. I recall you mentioned you are ANA pos. Is that ANA gp210 like me? If so, its so reassuring that there is a good outcome for us with this much rarer diagnosis (as its believed to be more aggressive🥴). I have been on 2nd line Ocaliva for 9 months now and it seems to be working for me as my ALP has now come down to 153! the lowest since diagnosed three years ago 🤗 so fingers crossed 🤞. I'm feeling positive we won't let this beat us and just get on with our lives 😊

[Liz_K in reply to Liz_K]

PS Are you on Bezafibrate for itch?

[LindaVillanova in reply to Liz_K]

No, not for itch, I never had that. It was to reduce ALP which it did.

[LindaVillanova in reply to Liz_K]

Hi Liz, Congrats on OCA news! (I am not ANA Pos, must have been a different person)

[Lena2011]

thank you, I had a chat with consultant he said the Ocalivia is very expensive so they won’t offer until I have had the maximum dose of urso which is y they have upped my dose too 1000mg instead of 900mg!!! They will review me again in October 🤷‍♀️

[Rozzie52]

My levels were 1300 in 2018 , I was partial responder to ursodeoxycholic and my consultant put on Octilva in 2020 my levels have just turned in to what is considered with in normal range and it’s taken 4 years for my liver enzymes go down

I hope you get better soon

[Lena2011 in reply to Rozzie52]

I’m glad urs in on the rite road now it’s good too hear I’m not the only 1 that it’s takeing time too come down, x