Hi everyone,
What’s your experience of being put on Ocaliva? My Gastro is considering putting me on Ocaliva as the Urso doesn’t seem to be working properly. I’ve googled the side effects and it seems to give conflicting advice. One site says reduces itching as fatigue, the other says side effects include itching and fatigue!
Just wondered what others have found. Also, do you take with Urso or instead of it?
Best wishes
Hilary 💕
Hils67...G’morning. I take ocaliva alone & have no side effects. Have taken it little over a year. 😊
FDA issued a black box warning on drug. You can Google information. Check with your doctor.
Yes & if you read far into that warning, drs were not prescribing correctly. Not necessarily Intercepts or Ocaliva fault. Some drs simply do not pay attention to dosing instructions set out by Intercept. All prescribing physicians receive the dosing info. If they ignore it that’s their negligence.
You're right about incorrect dosing by docs when the drug first came out. They all should know dosage now. It is NOT to be taken by someone with advanced liver disease- noncompensated cirrhosis. Most do take it with Urso. Some have experienced increased itching for sure. Weighing possible benefits is what each person taking it has to do. Many need at least a year on Urso to be considered a non responder.
I had only been on ocaliva a couple weeks when that warning came out. Yes, I was scared to death. I was scheduled for labs in 3 months. I couldn’t get straight answer from my dr whether my dosing was correct. I ended up talking with a pharmacist who apparently was with Intercept. Needless to say she took my drs name & said she had to report it. He received a phone call from then I received a call from him. Needless to say he was pissed. I was then scheduled for monthly labs for 4 months. Drs are told to check labs monthly for few months to watch for problems. Intercept does not take those things lightly.
Good to know. I read the warning. Just put it out there as an FYI. Nor to scare anyone. I was one drug for years to treat depression. FDA issued black box warning. I happen to see it in medical magazine. My doctor knew nothing about it. Many people had liver failure and injury. It is now off the market. It can be scary. Glad medication is working.
My numbers have been perfect for many months. But having said that, my fibroscan in August showed small increase in fibrosis. Even though fibroscan is not totally accurate, I’m very concerned. But until I see the hepatologist & discuss it all with him, I’ll keep taking it. All drugs are a little scary but we have to decide to take or not. 😊
Never had a fibroscan. Only liver biopsies. One in 2004 and one in 2018. They are both grade 1 stage 2 fibrosis. In 2004 was diagnosed with AIH. Numbers not high enough to treat. I live at doctors getting tests constantly. Was also diagnosed with CREST. But only developed RE. Was so stressed out. We move to different state and I did not have liver tests for 9 years. Felt great. Finally went and ALPs were high so they said PBC along with biopsy. Now anxiety is back. No symptoms other than that. On Ursidol. Should have had bloodwork two months ago. They think my son has chrons so need to deal with that first. Never a dull moment. Who knows how accurate any of these tests are. Wish you best of luck.
Oh my. My labs suggested CREST as well. Negative on all heps & RA. No lupus or sjogrens. I’ve not seen rheumatologist as of yet. I have no insurance st preseason I’ll focus on liver until... I feel great but have trouble keeping my weight on. That’s another thing I will discuss with hepatologist to see if he feels it is due to OCA. True about tests. Hard to think something is wrong when we feel so good. If I weren’t AMA positive,, I would say I don’t have PBC. But I do. It’s so comforting to have this group. Other support groups do not compare. Hope your son gets along okay. 😊
Hi gwillistexas,
Do you mind sharing what labs you had done to suggest CREST. After learning that PBCers often have an overlap with another autoimmune disease, I ran to a rheumatologist who ran a battery of tests. Almost wish I hadn't done that.. lol. He was very vague about the results. Said I had random positive tests and maybe leaning towards Scleroderma/CREST. I looked at the diagnostic criteria and don't think I fit the bill. He got really defensive when I questioned him and barely gave me any answers. Just a frustrating experience and I'm not to the point of seeking another opinion just yet, but I won't be going back to him..grrr🤨
HealthyChic...it was the ANA Cascade. It is in fact a cascade of tests😊
Yes..that sounds similar to what I had. Mine included a Lupus/SLE tier among others. I had a few positives but nothing conclusive, and there were over 50 antibodies tested. Just a confusing experience. My hepatologist explained that simply because I have an autoimmune condition (PBC..and Raynaud's) that I'll likely throw a positive for random antibodies..said I may or may not develop anything else. Felt the likelihood was low..so I'm just going to forget about it until I develop new symptoms. Thanks for your reply.😊💕
Yes mine was only suggestive of schleroderma. I’ve had no symptoms that I’m aware. For now I’m not worrying about it. 😊
*no insurance at present. Love autocorrect 😁
Dosage is either 5 or 10 mgs. Everyone should start on 5mgs. It's important to watch cholesterol levels when taking it along with regular (every 3-6 months) liver panels. If itching becomes a problem, there are many drugs available for use.
Fortunately, I’ve never had an itch before or after starting Ocaliva. I’ve had no symptoms of PBC ever. They did try me on 10 mg once when my ALP went up. Made me so sick we dropped back to 5 mg.
Hi,
I was put on Ocaliva after years of being on Urso then becoming a partial Urso responder. My AF was always higher. I had no side effects from the Urso. However, I developed some side effects from the Ocaliva namely, it makes me feel a bit sick, gives me a bad taste in my mouth and makes me more tired; this developed after a few days. I was told that Ocaliva can initially make the itch worse but that usually improves.
I was prescribed 5 mg daily. However, due to the side effects I take it every second day. I've tried every 1 1/2 days but it affects my quality of health. I got good improvement with the daily Ocaliva so it was really disheartening that I could only take it every two days.
I suspect I react to certain fillers so it could be a filler reaction but I don't know. I still get some benefit with the Alk P at the every second day to make it worthwhile.
I've had the bad taste with other meds so I suspect this is unusual; when I looked into it, there had only been four reports.
All the best with it, Hilary.
Thanks Lucky4,
I’m waiting to hear whether my gastro wants me to take it, just thought I’d research it a bit first.
Thank you xx
Thanks for sharing your experiences and how important it is to often 'trial-and-error ' adjustments to taking it.
My Gastro has since kept me on URSO and we decided to just keep monitoring my numbers. Thankfully they haven’t increased too much and my ALP is still hovering below 200 🤞
I'm on both Ursodial and Ocaliva; no bad reactions to either, guess I'm lucky. I have PBC and AIH, stage 4 according to my Hepatologist
Good to hear that taking both meds is helping to keep your numbers stable. How long were you just on Urso? Were you a nonresponder to it?
I am still on both meds and still stable 🙏
My consultant suggested I try Ocaliva and said I would still infinite with Urso. I have refused the Ocaliva.
Stupid auto correct... Still continue with the Urso too.
Can I ask why you refused?
Hi. My only symptom is constant itching. After reading side effects, I'm not prepared to take any medications than I'm already taking, that could possibly cause more harm to my liver or kidneys. I am 72 in a week's time, and apart from itching, I am well and prefer to keep like that as long as possible 🙂
Thanks Sandy,
Happy birthday for next week! Thanks for the info.
Best wishes
Hilary
If your numbers are improving, I can understand why you would hesitiate to take Ocaliva. Often we need to question what doctors want us to do. Advocating for ourselves is so important in so many ways with this disease. We all need to keep learning all we can.
I'm on it and I've had no side effects, but thankfully I haven't had much itching ever. I'm stage 4 PBC and stage 2 cirrhosis.
ROprish, I have a question. How long have you been on it? Did you progress while on it or did it stabilize you?
Side effects of Ocaliva
PBC and newly started Ocaliva
Cost of Ocaliva in the US.
