Ocaliva: Just started a new drug Ocaliva I... - PBC Foundation

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Ocaliva

Shirl5 profile image

Just started a new drug Ocaliva I take 5mg daily. This is a new drug for people that have PBC that take URSO and it doesn't work for them. Just checking if anyone has been taking this drug. I am having extreme itching.

21 Replies

Hello Shirl5.

I am in the UK and as yet this Ocaliva isn't available here.

I did read about when it was under trial. Read that it can cause itching. I started with itching in early 2010 that led to the diagnosis of PBC and I have been taking urso now for over 6yrs. The itch has altered in frequency - I tend to itch around 11p.m until 6a.m - but I know for me I'd be a bit unreluctant with regards to this new Ocaliva due to reading up about it and the fact that it can cause itching.

It could well be though like I thought the urso in the early days, it made it worse for awhile.

In the early days when I thought the itching was worse I decided to keep taking the urso until my first bloods about 2 months after starting it. I decided to continue due to the fact my LFTs (liver function test) and GGT did start to drop dramatically in the early days.

Hi Shirl5

I have been taking OCA ( Ocaliva) for over 3 years and have not experienced any itching. However, itching was a common side effect reported by those taking it as part of the trial. I have never itched with Urso either so I guess we probably fall into 2 camps !

Good luck with it - although I have wide spread cirrhosis that can't be reversed, my LFTS have improved dramatically. My consultant says I was right on the edge and OCA has pulled me back - mixing my metaphors but you know what I mean !!

Karaliz

katekirvan profile image
katekirvan in reply to Karaliz

Hi Karaliz,

How much OCA are you on? 10mgs? Did you not respond to URSO or are you taking URSO with OCA? When did your notice an improvement with your liver enzymes on OCA? 3 months? Longer? I am in an OCA clinical trial and wondered when I will see results. I am like you and have widespread cirrhosis. It is very encouraging to hear how well you are doing on OCA.

All the best,

Kate

Karaliz profile image
Karaliz in reply to katekirvan

Hi Kate. I am in Australia so apologies for late reply. Shall I tell you my story in a nutshell? I was diagnosed at 38 ( 2003) with no symptoms other than fatigue which I put down to having 4 children and working as a nurse. Deranged LFTs and a biopsy later ( stage 1-2) confirmed PBC. Took Urso as prescribed and forgot I had PBC most of the time - although I responded to Urso for the first 7 years, my LFTs were always abnormal. In 2011 after 12 months of feeling dreadful, I had many investigations - US, MRI, Fibroscan , another liver biopsy and blood tests - which confirmed my PBC had advanced significantly - my liver was now cirrhotic. My LFTs continued to climb, my Albumin dropped and I have to admit I felt shocking. Kept working and raising our children but my husband was scraping me up off the floor after work !! My wonderful consultant recruited me in to the OCA trial and for the first year I was on the placebo. I was lucky enough to be swapped to the active arm after that year and am now entering my 4th year on OCA - I commenced on 5mg which was titrated up to 10mg after 6 months and I have been on this dose ever since. Although my Dr refers to me as a nonresponder to Urso he still wants me to take the Urso in conjunction with the OCA. The improvement in my liver enzymes was evident after 3 months and by about 9 months after commencing it, they had come down significantly and then levelled out.

I am still on the trial as part of the long term safety extension arm.

I do feel very grateful as although my Dr has told me my liver won't last forever and I most likely require a transplant one day, OCA has bought me time I would not have had otherwise. I also feel better as my liver is not so inflamed.

I am eager to hear your journey Kate and I do wish you all the very best.

Karaliz

katekirvan profile image
katekirvan in reply to Karaliz

Hi Karaliz,

Thank you so much for your response. I very much appreciated it. I live in Canada. I was diagnosed in 2001 at the age of 30. I was an URSO responder but within the last year I have progressed to stage 4. I have cirrhosis and portal hypertension and my liver enzymes have risen. I started in the OCA drug trial in September. I started at 5mg or placebo and since December I am now on 10mg or placebo. I am wondering if I am on the placebo as I have not had much change. The drug is expected to be available in Canada later this year. I am hopeful I will respond as well as you did.

Thanks again for taking the time to respond.

Kate

Karaliz profile image
Karaliz in reply to katekirvan

Pleasure Kate... Everything is crossed for you. I feel you are probably on the placebo as the results from the phase 2 part of the trial and beyond have generally been so positive.

When my results did not improve that first year I was randomized to the placebo arm, all the Drs involved were convinced that I was not taking the active drug.

That is great news you will be able to access OCA later in the year. There is no word,as yet, when it will be on the market here in Australia.

I wish all the very best for you and look forward to hearing how you get on.

Karaliz

Extreme itching is the main side effect. Contact your doctor for something to treat the itch

I've had horrible itching since starting Urso 10 weeks ago

I am now on my 6th night of not sleeping

But the Urso had started to drop my ALP which was over a 1000

Suziebeau profile image
Suziebeau in reply to Melwoods

Hi there I also had this when I started Urso. On the advice of my consultant I dropped down to 1/4 dose and itching subsided. I then built very slowly over about 6 weeks to full dose and I haven't had any issues since and that was 3 years ago. Worth a go?

alison600 profile image
alison600 in reply to Melwoods

Hi Melwoods,

I've also started Urso about 10 weeks ago. My ALP was over 760 and dropped to around 400 after the first month, however, just had my 3 month test and there was little change. Have you had a similar experience? I'm trying to determine if it's just not working or if I need to be more patient.

Thanks for your time.

Alison

PBCFoundation profile image
PBCFoundationPBC Foundation

Hello Shirl5,

i have sent you a message.

Best wishes

The PBC Foundation

Hi Shirl5

I have been on Ocaliva since September of last year. I had the itch before starting medication. I haven't had a change (more or less) in it since taking the medicine. I read that it can cause itching in those who haven't been itching and can make it worse in those that do. My latest blood test didn't show any difference since taking the Ocaliva either. I am getting more lab work later this month so hopefully I will see a difference then. Take care and keep us posted.

Lisa

Hi Shirl5,

I have been taking Ocaliva for a little over a month. When it comes to itching i have my good days and bad days. As time goes on I see a huge difference in the way I feel. The itching has mostly subsided. Give it time the longer you take it the better you will feel. This should lower your cholesterol as well. Stay positive you will see a difference. Feel free to ask questions.

Best of Luck!

stobin profile image
stobin in reply to Nicaganew

So I took it for 30 days and the itching was so intense I could not sleep, broke out in hives and have bumps everywhere on my body. I have stopped taking it and am going to the doctor next month after having a couple of tests so I am not sure what he will recommend.

Thanks for the info.

S

Nicaganew profile image
Nicaganew in reply to stobin

I am sorry to hear that. I have had my first blood test and my numbers went down. Been on it a little over two months and the itching has pretty much went away. When you go to the Dr. ask for Hydroxine it is a prescription Bendryl. Keep me posted on how you are doing.

All the BEST!

Nicaganew profile image
Nicaganew in reply to Nicaganew

The Dr. is obviously the Boss I just feel so good after three months. I went through itching when i first started to take it. Don't give up on it.

Thanks for the info, do you know how long it took for itching to subside?

Urso doesn't work for me so I am hoping this will do it.

Hi shirl5, I am unable to take urso and was looking forward to Ociliva being available. However I have read several times that itching seems to be a common side effect with this. I am not taking them yet but have no real symptoms with pbc,so not sure whether I want to give them a go. Hope this settles down for you.

Hi shirl5,

Thanks for posting this. I am also a Urso non responder and recently referred to the liver clinic by my gastro guy (who can do no more to improve my #s apparently).

OCA is going thru approval in Canada, but hoping I can get on a trial if there still is one. I do not have itch with urso, so hoping same with OCA if/when I can get prescribed.

Appreciate the thread and info here.

My itching went from minor to severe within 1 week or so of starting the Ocaliva. My doc changed my dose from 5 mg a day to taking it every other day with my 900 mg of Urso. It seemed to help some. Now he put me back to taking it daily and lowered my Urso to 600 mg a day and 5 mg of Ocaliva. The itching increased again; waiting on doc to return call for status. My hands, feet and thighs feel like they are hot and look a bit red. My sleep is awful because I itch in my sleep, I have bruises and scratches all over. My face, head, torso and even my vaginal area are really itchy, just not as bad as my hands, feet and thighs.

I have a supply of Ocaliva but doctor said I don't need to take it yet since my enzymes went down.

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