I have PBC since the age of 34. I have been taking Urso 1000mg per day for 6years now and there has been no severe itching and I am leading a normal life so far. I have two young kids. I stopped working when my first child was born as I wanted to spend all my time with them unknowing of the fact that I will have PBC. My doc said consider it like another chronic condition like Asthma or Diebeties. He said a little life style change will help a long way. Which meant occoasional social drinking and less fatty food etc. My morals remain very high following my docs advice back in UK.
I am living in USA currently.
My Alt and proteins have always been higher than standard despite Urso but not too high. Latest liver biopsy showed inflammation to the liver. So my gastroenterologist prescribed Ocaliva 5mg daily along with 1000 Urso. I took it for two days and I am having some side effects. As soon I take Oca, I feel very sleepy. After sleeping for about two hours I feel very light headed and very low in energy. I felt little dizzy. Also I have the urge to empty my bladder quickly. The sleepiness goes away in about 6 hours but I remain low in energy.
I have been asked to stop taking it for a week as I am still recovering from liver Biopsy side effects which took place 15 days ago. Which is another story.
I am hoping that after a week when I take it again I don't get those side effects again.
Is there anyone who had Oca side effects like mine? I wanted to know if those are permanent side effects or will get better with time.
Should I be taking it before going bed so that I don't sleep during the day.
Any help is appreciated.
Thanks
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No I am not taking anything. My dr is still investigating if I have it. I had ultrasounds and ct scans in November and it showed my liver was fine and so was my blood. This is all new. I just had blood work today
I am 53 and have had PBC for 10 years now. Three biopsies (first one to diagnose and every 5 years thereafter. MY alk-phos range stayed around 460, and that's taking 5-300mg Urso a day. I have been on Ocaliva for 4-1/2 mos and don't like it. I have broken out in a rash on my back, arms, stomach and chest and it itches. I look like I have chicken pox! I quit taking it for about 3 weeks and the itching subsided. I started taking it again a few days ago and the itchy rash on top of my shoulders returned. I'm at a crossroads as to whether I'm gonna continue it....
I am in the UK and I suspect you know that it has not been approved by NICE for use over here yet. As you are now in the USA have you made contact with
as well as their own web site. Quite a few of their contributors have been put on Ocaliva so they may have more information. I know this page on Health Unlocked is world wide but it may be another source of information for you.
hope someone on here with experience of Ocaliva will be able to answer you soon.
Hi. I have PBC since 2002. I got diagnosed after a biopsy.,after that I got in comma for 3 months.My liver started bleeding and all my body stop working. My recovery was pretty fast because I was determined to get well and I was young. I'm taking Urso and Ocaliva since January. I take it at night and I sleep like a baby. I was really worry about the side effects thanks God I haven't get anything. My only problem with Pbc is that I got early menopause 3 year ago and we can't have children,so it was devastating for us. My husband is in deep depresion for that reason. I try to eat healthy and exercise every day. I have been well since the diagnosis.
I felt sad reading your story.Thankfully I am leading a relatively normal life with my pbc.you seem to have had a hard time. I was upset to hear you can't have children and how sad that must be for you and your husband. I send you my love and keep being healthy.
Thanks for your reply. I feel bit better knowing that the biopsy side effects I had were nothing as compared to yours. Sad to hear that you cannot have kids but you seem to be a very strong person.
I also try to workout everyday mostly walking, yoga and swimming.
In terms of eating healthy, I try to have more fruits and veggies. I am not a heavy drinking person but I am planning to stop it completely. Do you drink occasionally?
I was looking for some kind of guidance on what kind of food one should have in PBC. Any idea?
Good to hear that you don't have any side effects with Oca. What is your urso and Oca strength and what time do you take it?
I look forward to hear from you as I don't know anyother platform I could discuss my concerns with.
I hope you are feeling well. Most of my diet is vegetables,fish and fruit. I try to avoi meat because the liver work too hard to process properly,also I avoid salt intake. The salt produce fluid build up and swelling in the liver. One thing I always start the day is a glass or two of dandelion tea with a teaspoon of raw honey and juice of half a lemon. Dandelion root is thought to aid in liver,also the artichoke is super good for the liver. I don't drink or smoke both are too toxic for the liver.
I take Urso 300mg two in the morning and two after diner. Also I take Ocaliva 5Mg one at night.
I started taking The new med at 5 mg a day with my Urso staying at 900 mg a day in December and within a work so or the itching was worse than I have ever felt. Two weeks went by before the doc decided to change my dose to 5 mg every other day. The itching got better and was tolerable then. During my checkup 25 Jan, they changed it back to daily and lowered my Urso to 600 mg. Guess what, itching increased again. I have bruises and scratch marks all over. Sometimes I don't sleep well because I am awakened by itching and then can't fall back asleep. The only good thing is that my alk phos numbers are lower than they have ever been since I was diagnosed in 2005; still high, but at my lowest.
Only two days of Oca, I had small bumps all over my leg and they were itchy. I also had low energy and little dizziness. So I have stopped taking it for a week.
My Alf is not high but not very high with 1000 urso. I am thinking that I have more side effects if I take Oca than benefits for now. May be in long run Oca will be helpful but I cannot function with its side effects as I have two small kids.
Do you feel your itchiness has gone down from the time you started?
I have been on the new medicine for a month and a half now. I will say during the first three weeks I had some side effects but they all worked themselves out. My side effects were different thank yours. Except the itching. I did have that. I think it just needs time to get in your system. As of now i feel great. I am no longer fatigue and the itching has calmed down immensity. Good Luck! You will get the results you want.
Hi, thanks for your reply. It feels good that there is some hope from these side effects.
Do you take both Urso and Oca?
I also noticed after two days of Oca that I had small bumps all over my legs which were itchy. Right now I have stopped it but I am guessing it will come back with other side effects I had once I start again.
I have been taking Oca for five days and began duffering from itchy skin since the second day. There is no major weakness or dizziness but extremely and desperately itchy skin. I was diagnosed with PBC 25 years ago and was taking Urso 3 times a day (for 20 years) and didn't respond to treatment as expected.
Hi! I would have to ask how long you took Urso? What kind if improvements did you see in your numbers? Most of us never get to that 'normal' range but improve significantly and remain fairly stable - somewhat near normal. Often it takes up to a year to really see if Urso is working. Are you taking the lowest dose of Ocaliva? 5 mgs? I would ask the pharmacist about taking it at night.
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