Ocaliva and side effects

[Beatris03]

Hello everyone! I recently started taking ocaliva. I don't know if they help, I'm due to go and have some blood tests done. Pros...the sharp pain I used to occasionally have in the liver area is gone. Cons. The itchy skin drives me insane, can't sleep, I'm always tired and to add insult to injury some small pimples/bumps appeared on my chest,legs,arms that bleed when I scratch. Is that normal, is it a side effect? I'm 44, diagnosed at 38, tried urso a couple of years ago, the side effects were hair loss and swollen ankles, stopped, didn't take anything until April this year when I started Ocaliva. Before Ocaliva ALP199, ALT 83,FIBROSCAN 5.2kPa. Thank you.

[DonnaBoll Administrator]

OCALIVA may cause serious side effects, including:

See “What is the most important information I should know about OCALIVA?”

Severe Itching (pruritus). Itching is a common side effect and can sometimes become severe (intense itching or itching over much of your body). Severe itching can cause discomfort, problems sleeping, and problems doing daily activities and usually needs to be treated. Tell your healthcare provider if you get severe itching or if your itching gets worse.

Lower HDL‑C (“good” cholesterol). OCALIVA can lower high levels of HDL‑C. Your healthcare provider will check your cholesterol levels during treatment with OCALIVA.

The most common side effects of OCALIVA include: tiredness; stomach pain and discomfort; rash; joint pain; mouth and throat pain; dizziness; constipation; swelling in your hands, ankles, or feet; fast or irregular heartbeat; fever; changes in how your thyroid gland works; dryness, irritation, redness, crusting or drainage of the skin

This information is from the Ocaliva site itself. One of the biggest side effects of Ocaliva from the beginning it that it greatly increases itching for most who take it. I'm sorry you couldn't stay on Urso and see if some of the side effects you were having would have subsided in time. Some find it easier to take Urso if they 'build up' to the full dose over a few weeks.

I wanted to see what Dr. Jones says about Ocaliva. Do you have his book? He says that people take Urso along with the Ocaliva. If the Ocaliva causes continued severe itching he suggests that in the UK patients can take Bezafibtate - those in the US take fenofibrates along with the Ocaliva. They have been seen to be very effective against the itching. You might have this conversation with your doctor. I know from my own experience the itching can be life consuming. There are medications for the itching like cholestyramine or rifampicin or a combination of both.

[Lindz1]

It's a side effect I had to stop taking them for this reason.

[Turquoise2075]

Hi Beatris03,

I was a non-responder to Urso. I tried Fenofibrate but I had strong side effects so had to come off it. I’m now on Ocaliva since June last year. In the first few weeks I had an increase in itching but that soon subsided. I still get itching from time to time but not badly. So it won’t necessarily persist but it does sound like it’s worse for you than it is for me. I haven’t had the skin bumps you describe and apart from a temporary increase in itching I’ve had no other side effects. On the positive side, before Ocaliva my cognitive function was badly affected. 3 weeks in it greatly improved. It apparently is believed to restore the blood-brain barrier which can help those of us who get the cognitive symptoms with PBC. My fatigue levels actually improved on Ocaliva too. I would keep note of what’s happening to you and check in with your specialist. I hope maybe the symptoms will subside in time but certainly we are all individual in our response to meds. I hope it works out for you but obviously if you keep getting strong side effects you may have to try a different strategy.

[DonnaBoll Administrator in reply to Turquoise2075]

I have heard others say if you can just 'hang in there' for awhile that the itching does get better for some. Glad that was the case for you. At both PBC Foundation Summits I have attended a drug company was working on what they felt did affect that 'blood brain' barrier - causing the disconnect with the brain fog and cognition problems. That was a really great suggestion for her to keep track of when this happens - what foods she is eating perhaps. I know for some dietary changes have made a huge difference in how they feel overall. I've read about The Antiinflammatory Diet.... eliminating certain food that ended up leaving them so much more comfortable overall. We all keep looking for what might help us - and others.

[gwillistexas]

Good morning. I also couldn’t take URSO and have been on ocaliva 5 mg 7 years. The only problem I have is my thyroid is consistently out of range. My thyroid was removed so I depend on the thyroid replacement hormone. It is a roller coaster for my dr. Constantly changing my dose. I hope your labs will be much better on ocaliva. Good luck.

[DonnaBoll Administrator in reply to gwillistexas]

Do you see an endocrinologist for your thyroid issues? I'm so glad the Ocaliva has helped keep your 'liver' numbers in check. So the Ocaliva didn't increase any itching for you then?

[gwillistexas in reply to DonnaBoll]

My internist has always treated my thyroid. I was seeing an endocrinologist but she only scheduled me yearly. That doesn’t work. I told her it had to be watched closely due to the up and down results. I didn’t really like her so I’m letting my internist carry on with it because he does all my labs every 4 months. He usually checks thyroid every 2 months just keep a close watch. I’ve never itched with PBC and ocaliva never caused me to itch.

[DonnaBoll Administrator in reply to gwillistexas]

Sounds like you made the wise decision to have your internist take care of you. That is such a problem with almost any specialist --getting in to see them initially then they only want to see you every year or so. Getting the thyroid checked every 4 months surely must give you peace of mind that 'all is ok'. You are doing a great job of taking care of yourself for sure.

[Larrysgirl]

Hya Beatris03~

I cannot help with info on Ocaliva but can I ask what you are taking for the itching? I tried all the usual meds they give PBC patients and finally landed on 25mg of sertraline daily that I can raise or lower according to the severity of the itching. I pray you find relief soon. I know how debilitating it can be as mine was very severe.

God bless, Anni

[DonnaBoll Administrator in reply to Larrysgirl]

Sertraline has been helpful for many who suffer from the itching. The itching sure seems for most a real 'trial and error' for what helps - and for sure what doesn't. I have a 'file' I compiled for another support group of what might help - I will find that and post it here. Thank you again for the suggestion.

[Lena2011]

Ocaliva I started 3weeks ago the first week I had really bad dizzy spells and I started too itch more but after the first week it all eased down I have no more dizzy spells and the itch is a lot less I hope yours will start too ease off a bit!

[sophiaS1980]

I have PBC but m scalp itches the most, but sometimes i get burning and itching all over but not often, mostly scalp.

[alpha3]

Just seen your post regarding itchy bumps that bleed when scratched. I have exactly yhe same and have had them for a long time. They drive me mad and sometimes are worse than others. sorry I don't have a solution for them