Ocaliva and side effects

Hi all,

URSO isn't working for me as it should. I was diagnosed 2 years ago and my Alk phos results was over 1000. They are now at 299 but still not reducing as they should. I've been offered to change to Ocaliva or to take part in a clinical trial. I'm concerned about the side effects of Ocaliva but I'm interested to hear how those of you who are or did take it found the side effects.

I'm trying to gather as much info as I can to make my decision as to which way to go so your experiences of this drug will help.

Thanks in advance for your responses

27 Replies

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  • Hi there. I can't share experiences with you unfortunately but I am in almost the exact same situation as you. Diagnosed 2 years ago, very high LFTs that have come down since going on URSO but not enough. Will probably be going on Ocaliva next month. I have been following people on it. I think you'll find some will tell you the itch increased and some will say no side effects whatsoever! A bit like URSO. However what I do know is that all remain on URSO and take Ocaliva with it. So do check that part out with your doc. Keep us posted,

  • Sorry - forgot to say the general consensus of those on Ocaliva seems to be very positive in that it does work to bring down LFTs.

  • Hi Lisa. Thanks for the reply. Please let me know how you get on with it. I have a while before I go back with me decision so still plenty of time for me to think about it. Not sure if that's a good or bad thing though. Fi xx

  • Hi Fifibee. This is my 4th year on OCA ( still on trial here in Australia) and I have had zero side effects. However I have never experienced the itch and have no side effects from Urso either so that is probably significant.

    Good luck !

    Karaliz

  • I'm waiting for approval to get Oclavia, hoping this week. I pray for easy go on this one. Hives on Urso. 😊

  • Fingers crossed you get the go ahead and it works for you. Please let me know how you get on xx Fi xx

  • Hi there. Thanks for coming back to me. It's good to know it's working for you. Fi xx

  • Hi Fifibee11

    I have been on Ocaliva for a year and I haven't had any side effects.

    Lisa

  • Hi Lisa. That's good to know. It seems to be a drug with a 50/50 split for those effected or not. Xx Fi

  • That's encouraging to me😊

  • Hello 👋, I'd like to start with being diagnosed in 2012 at stage 2. The Urso worked until I lost my insurance for close to 18 months. In that time, my university heptologist feels that I progressed into stage 4 from not having treatment, then when I was back on the Urso it wasn't working as it should any longer. I started Ocaliva as a type of booster with the Urso in June of this year. It is considered a specialty drug in the States. It took my heptologist a bit of time to get my insurance to cover the cost. I started on Ocaliva 5mg for a month with a standing lab order for every two weeks for the first month. Then I have been alternating Ocaliva 5mg with Ocaliva 10mg for this past month. Working my way to the dosage of 10mg daily, plus the Urso 1000mg daily. The only side effect that has been a issue for some is the itching. But in my case, the itch hasn't been any worse than before the Ocaliva. I feel that gradually working my way up to 10mg daily has been a huge help. Im due for more blood work today & will get my result within 24 hours. It's worth a try if the Urso isn't working for you. Praying it helps to slow things down for your PBC.

    Stay strong❣️

    Shannon

  • Thanks so much for coming back to me Shannon. In the UK I'm lucky that apart from a small prescription fee the cost of my drugs is covered by our health service. It must be extremely stressful having to not only manage your health but battle for the drugs you need to be paid for. I hope that you start to see an improvement I your bloods and for the progression of this disease slowed down. Love and positive thoughts for you xx

  • Hi, I'd suggest contacting the PBC Foundation. They'll have impartial information and be a knowledgeable sounding board should you want to talk it through with them. Best of luck. Cx

  • Thanks I will do that. I hadn't even thought of contacting them x

  • I'm only on OCA for 2 weeks -nausea for a few days, light headed, but no other side affects after the 1st week. blood results expected this week. fingers crossed! My ALK also stalled around 300. Let me know if you start!

  • Hi Linda. I hope those blood tests are positive. Would you mind sharing with me if they improve or not? Of course I will be happy to let you if I opt for it x

  • Just came in and the numbers have declined as I had hoped. ALP 268 - was 313 (haven't been that low since I was diagnosed 2 yrs agol!) Aspartate is in normal range - woo hoo!!!

  • Great news! So you think Oclavia helped ?

  • absolutely. #s have not been below 300 for 2 years

  • That's encouraging 👍👍👍

  • Hi, I am on stage 1 PBC since 2011. I have been on Urso since then but in March this year I was also given Ocaliva as my Alk always remain around 250. First week of Oca was full of side effects like sleepiness and itchiness but it was 5 days after my liver biopsy when I started and I had some issues in that biopsy so I stopped taking Oca till I recovered fully from biopsy side effects.

    When I started again, I had problems like a lot of stiffness in knees and fatigue but itchiness and sleepiness had gone by then. my alk was still around 200 after one month of Oca so not much of a difference there. This is my fourth month now on Oca and I will be going for blood work today and will share if it becomes normal. But I still have stiffness in knees and fatigue little bit. I also have realized that I have put on 10 pounds more weight after Oca mainly because I am unable to do exercises I used to do before. My doc suggested that I have to choose between quality of life and longevity. Since Oca has not given perfect results I am thinking of stopping it and see if my quality of life will improve without it for sometime.

    I wish you good luck.

  • It sounds like you've had a rough time of it recently. It's so hard to live with those side effects and it seems cruel that it's a decision between longevity and quality of life. I hope you get some positive results. Xx

  • I forgot to mention that I am on both Urso 1000mg and Oca 5mg. If you decide to go on clinical trial with Oca then would you be stopping Urso?

  • I'm not sure of the ins and outs of the trial yet as I was given the 2 options of what they are prepared to offer me. They are currently running more blood tests and I have to go back up for a number of scans so hopefully will know more then.

  • I should receive my Oclavia tomorrow. My dr told me it doesn't have same ingredients as Urso so he thinks I should do ok. Said to keep Benadryl on hand for itching if needed. I have read thoroughly about Oclavia. Any drug has potential side effects. Like you, I get scared when I read them. I'll try to post the info.

  • I'm not sure how to share article from my email. Clinical trials of 216 patients proved decline in ALP. That's what I do remember. 👍

  • It is used when Urso can't be tolerated, or no satisfactory reduction in labs. Can be combined with Urso, or alone.

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