Ocaliva

[Shulsey]

Not real sure why but my heptologist is wanting me to start taking 10mg Ocaliva on Mon- Wed-Fri. Then take 5mg Ocaliva on the days between for one month, then 10mg from then on. I thought that the 5 mg was doing great. I sent him a message through our website asking why this is & am waiting on his reply. Any thoughts out there?? Suggestions please & thank you!!!

❤️

Shannon

P. S.

Im worried I'll start itching more than I already do. I could be jumping to conclusions, but I feel that things are starting to look up for a change.

[Sachin1234]

May be he wants to find out right amount of dose for you..

is ocalivia make everyone so itchy or just depends on person to person?

Don't stress too much!!

[Karaliz in reply to Sachin1234]

I've been on 10mg Ocaliva for 4 years & have had not one moment of itching. Very individual I believe. I have never experienced itching with Urso either.

Cheers

Karaliz

[Sachin1234 in reply to Karaliz]

How long have you been diagnosed with pbc?

[Karaliz in reply to Sachin1234]

14 years. Diagnosed at 38 when the youngest of my 4 children was only 5. Responded ( partially) to Urso for the first 7 or so years - in fact i forgot I had PBC most of the time!

My LFTs deteriorated dramatically in 2011 and many blood tests, MRI, US, fibroscan and finally another liver biopsy later it was evident I had cirrhosis and PBC had greatly advanced.

My consultant recruited me into the OCA trial - placebo for the first year and as I mentioned have now been on 10mg for 4 years. Still on the trial as OCA is not commercially available here in Australia

Hope that's of some interest Sachin!

Best wishes

Karaliz.

[Sachin1234 in reply to Karaliz]

Good thing about living in a Australia is you don't have to worry about health insurance!

[Karaliz in reply to Sachin1234]

Australians are strongly encouraged to take out private health insurance but it is true that our public hospital system funded largely by Medicare is magnificent!

FYI - there are many wonderful things about living in the land of Oz!!

[Shulsey in reply to Karaliz]

One if the things on my bucket list is to visit Australia😊

[Karaliz in reply to Shulsey]

You would love it Shulsey ! I hope you are able to visit one day. xx It is a land of wonderful contrasts and superb landscapes.

Best wishes !

[Shulsey in reply to Karaliz]

The pictures I always see are absolutely beautiful. Plus I watch a lot of stuff on the travel channel 😊. Another place I'd love to visit is Ireland. Considering I am Irish from my father's side of the family.

[Karaliz in reply to Shulsey]

I hope you get there too one day !

We can't let PBC dictate our "one wild and precious life"

xx

[Sachin1234 in reply to Karaliz]

My brother lives in Sydney and I have lots of friends and family as well👍🏼

[Shulsey in reply to Sachin1234]

Dr Masuoka said that the itching is increased, for some, while taking Ocaliva. I already itch, just not all the time.

[LisaC22]

I'm pretty sure he's trying to gradually up your dosage to the correct level. Better for you if it's done gradually. Less chance of an adverse reaction. Let us know what he says.

[MistyField]

Hi Shannon, 10mg is the suggested dosage for Ocaliva. It is recommended that they start you at 5 then gradually move to 10. I would try it and if it is intolerable tell him u want to stay at 5. Every one is different and only you know how it makes you feel. 5 is better than nothing. He can make suggestions but you are your own advocate. Keep us posted.

[Shulsey]

Thanks everyone😉

[Pamela4475]

Hope you are doing well Shulsey..... how is the ocaliva going?

[Shulsey in reply to Pamela4475]

So far so good 👍. Im waiting on the 10mg tablets but still taking 5mg until I get the other. Everyone was right, he's gradually taking me to 10mg. Hopefully doing it this way I'll avoid more itching.

[Pamela4475 in reply to Shulsey]

So glad to hear it 😘😘