Hello!
Anyone is taking OCALIVA in addition to Ursodiol to lower ALP?
Does it work? Do you have any side-effects? How long have you been taking it?
My ALP jump quite a bit and my doctor mentioned OCALIVA.
I don't like what I read about the side-effects.
I'd appreciate your input.
Thanks!
When I was diagnosed in 2017 I was put on URSO and had an allergic reaction so I was taken off and put on ocaliva 5 mg. I’ve been on it since then and never had a side effect. It worked wonders for my Alk phos which was the only number that was high. I would say it’s worth a try. I send you the best. 😊
My response to Urso was not as good as hoped so I was offered Ocaliva as a second line therapy, 5 mg daily. I have not noticed any side effects and more importantly my alk phos reduced significantly. I have been taking it for about 3 years. Best wishes.
I couldn’t get in with it so was switched to Bezafibrate which is great
I have been on URSO since June 2019 and my levels were good for a bit and then continued to climb so I was put on Ocaliva and have been on it for 3 years now. I started the 5mg dose and it worked quite well for a while but was recently increased to the max 10mg as my levels started climbing again. I have a lot of side effects but I’m sure it’s a combination of the disease, URSO and Ocaliva. You get used to it. The only thing with Ocaliva was a bit of itch at the beginning of each dosage but it went away as I got used to it. You just have to stick with it.
Ocaliva is very expensive ($3200 a month in Canada) but my benefits cover it all.
Hi Katienharley, may I ask you how long did it take for the itch to go away since you started the 10 mg dose? My dose was increased to 10 mg 4 months ago and I still have the itch. Thank you in advance!
It took about a month for the itch to go away once the dosage was increased. I have been quite itchy again though for the last couple of weeks!! I’m hoping it’s just the change in weather. Humidifier has helped, not so hot showers and lotion up afterwards. I just had my blood work done again and everything looks good - I was wondering if levels were increasing again to cause the itch but that wouldn’t be the case now.
Thanks for your help and 💪🏻
Thank you so much for your input!
$3200 a month in Canada, seriously?! My gastroenterologist just mentioned that I could go on Ocaliva if Urso stops working. My ALP has been rising after over 10 years of it being normal. I'm also in Canada. Who can afford $3200 a month though? That's insane!
It’s over $10,000 in the US for 30 day 5 mg.
What?? How is that possible? How are people expected to be able to afford something like that? I'm self-employed. There's no way I could afford what they charge in Canada.
I know. When I started ocaliva in 2017, it was over $6,000 and has steadily increased. Ridiculous.
It's unbelievable, it really is.
Are there Patient Assistance Programs where you are? We have them here.
Not that I've ever heard of. When I earned less money, a small part of my prescriptions were covered by our provincial health program but now I'm paying full price. I'll look into it, thanks.
A friend in the US just told me about a drug company that Mark Cuban set up. The prices are a fraction of the cost because they cut out the middleman. I don't see Ocaliva on their current list of meds but Urso is there. You can apparently request they stock specific drugs. Here it is - costplusdrugs.com/
Thank you. I get ocaliva through my patient assistance program. It comes from their pharmacy.
I tried Ocaliva but was taken off when I experienced side effects. I continued on Ursodiol and this year started taking fenofibrate as well. Since starting the fenofibrate my liver function results have come down to normal or very close to normal.
Hi, I started Ocaliva in June this year. There was a bit of an increase in itching for a couple of weeks but that has gone now. Otherwise no side effects. The specialist took me off Urso when he prescribed Ocaliva, but I did read somewhere they can be used together which was thought to be beneficial from a study.
I was not responding to Urso after a year of using it. I tried Fenofibrate prescribed by my previous specialist but that had strong side effects for me while the Ocaliva is fine. Some people are the other way round. So I think you can only try and see what happens.
Before Ocaliva my liver readings had actually stabilised through supplements when Urso wasn’t working. My liver specialist went for Ocaliva because although my liver readings had normalised with supplements I had a return of fatigue and cognitive symptoms. Some people don’t seem to get the cognitive issues in PBC but for me they were significant. Ocaliva has recently been found to restore cognitive function in mice with PBC which is thought to occur through the restoration of the blood-brain barrier. So it was a bit experimental to see how it went with me, but 3 weeks in I began to have a huge improvement in cognitive function and fatigue levels which has sustained since then. So for me it seems to have definitely been beneficial.
Thank you so much for your input!
hello Iagra, when Urso stopped working I was out on Bezofibrate as well. This seems to be working. Not everyone gets bad side effects with Ocaliva. Good luck with it.
Thank you so much for your input!
I have been Ocaliva for 3 years now as well as ursodeoxycholic my liver enzymes went from 400 to a 100, I have few minor side effects mainly gastrointestinal and a bit of weight gain but nothing too serious . It worked for me.
Good luck with it 😊
Been taking 5mg Ovaliva here in Spain, fantastic results for me and no side effects at all.
Ocaliva and side effects
Ocaliva UK
Maybe I shouldn’t post OCALIVA side effects. I’m hoping everyone here knows them
Ocaliva side effects does it improve?
