Starting Ocaliva: I am starting on Ocaliva... - PBC Foundation

PBC Foundation

8,756 members7,366 posts

Starting Ocaliva

happy0507 profile image

I am starting on Ocaliva next week as I am not responding to URSO after 9 months. Anyone have any pointers for me as I start this new drug

17 Replies

hello. I take Ocalvia & no problems I’m aware of, so far. You’ll do fine.

Drink lots of water ( that’s my advice for everything!) I’m 10 days in on ocaliva after 7 months of urso and I experienced improvement in My liver enzyme evens in only one week. It does seem to make me itchy but I’ll live with that if the inflammation continues to improve. Good luck!

gwillistexas profile image
gwillistexas in reply to Ottley3

Ottley3...agree with the water. I never was one to drink much of it. Since this PBC thing, it has become my fluid of the day. I still have coffee & glass of tea or 2, but water with fresh lemon follows everything. 😊 I know we are supposed to keep urine clear as possible.

I do not take either drug. I had severe side affects from. URSO and for insurance to cover this one I believe the ALK needed to be really high, things may have changed I don’t keep up with it. I did hear about problems with Ocaliva in the past couple months but again have not kept up with it and what they are doing except askingdocs not to give 5mg daily, again since this article,e that may have changed. You might want to read this, then do more research. fiercepharma.com/marketing/...

gwillistexas profile image
gwillistexas in reply to Suekloo

Suekloo...do you take nothing at all for PBC? Yes, there was a scare about Ocalvia. Intercept Pharmaceuticals posted a response to FDA on September 25th. The drs who are prescribing Ocalvia, must monitor labs closely, as in monthly for a while to be sure no problems. I flipped when I read the FDA warning because Ocalvia is my only choice at this point. So far I’m doing okay with good results. That could change but for now I can’t worry about it.

Suekloo profile image
Suekloo in reply to gwillistexas

No nothing like URSO or Ocaliva. When I stopped taking the URSO my labs have stayed the same for 4 years now without. The URSO originally did bring the labs in line, but the drug messed me up badly. TSH became uncontrollably high, itching intensified greatly, and nausea to name a few. After much reading I determined that in my opinion each person was so very unique in this journey and I was not convinced in the least the drug was doing anything for me. I was already cirrhotic when diagnosed and had several autoimmune diseases too boot. Scleroderma was to that point my worst and it really was not bad compared to others. I have some skin issues and my esophagus is damaged greatly. After trying three GIs or HEPs I happened by a GI who had many PBC patients and fully understood scleroderma. He was local so I went to him for my first colonoscopy; he took one look at me, my skin, hands, eyes and knew I had both. He asked had I had an endo yet, and was surprised I had not, so he ordered it same time. I switched to him and after about 6 months I asked about stopping the URSO stating my ongoing side effects. He said give it a shot, and added it should lessen the itch not increase it. Then we will check labs in 3 months, they have remained stable ever since and I have little to no itch even with a liver 2/3 cirrhotic. He said to me what I had been thinking about different patients and he added that he believed it worked best if taken in early stage one, but really no way to prove since everyone reacts differently. I do now have a TIPS and take Xifaxim. The fibrosis from the scleroderma caused a band to break during and endo and I nearly bled to death twice in one week last year! I was in the best liver transplant hospital in Michigan and the TX team did a review and continue to watch me. But even with all that no TX. Way too sick upon arrival and in too good of condition within 10 days of the original event, when I came out of coma. I take each day one at a time; I am now having shortness of breath so a cat scan will be done tomorrow in prep for my endo on Tuesday. Praying Scleroderma is not messing with my lungs. I have not needed a banding since having TIPS, where I had been getting bandings monthly for close to a year before it. That’s my story and even though I was diagnosed in 2012 at age 55, I believe it began to invade me when in my twenties, I went through many doctors and tests with stomach issues. It was all in my heads, don’t you know. 🙏🤫🤫

gwillistexas profile image
gwillistexas in reply to Suekloo

Suekloo...my heart goes out to you. You have certainly traveled a hard bumpy road. Don’t know what to say other than try & remain strong. One of my labs pointed slightly to schleroderma & I pray each day it will leave me alone. Pls keep us posted. Prayers for you🙏🏻💖

Suekloo profile image
Suekloo in reply to gwillistexas

When I last saw my scleroderma specialist, he said to me that suddenly he is seeing more and more patients that have both scleroderma and PBC. He looked shocked, but really the change I have seen in the past five years, that is knowledgeable physicians and tests aware of PBC has shed new light.

Scleroderma comes in different forms, I feel blessed compared to other Scleroderma patients. I believe my purpose here just might be a 𝕄edical guinea pig for doctors to learn from. I have had some crazy things and I believe 4 times where doctors were astounded I lived throug the ordeal...2 of those were last year.

In 1992 with two children 2 yrs and the other 7 months by a sheer miracle an aneurysm was found on the Branch of the main artery from my brain to heart. I was seen by one of the best brain surgeons in the US and from the slides he said well it is so small it may never cause a problem, but while you’re young and healthy we may as well clip it. He said quick 4 hours and you will be done with about a 21 day stay here in the hospital. Well, When he got in there he was shocked to find that although it was small it was so thin it could burst during the clipping. He told me later, there would be no blindness or other affects....it’s location meant instantaneous death if it burst. Surgery went 10 hours and it wa successful. I remember being wheeled out of the OR by him and he leaned over and whispered in my ear....”God must have something very important for you to do, you should not be here...it is a miracle you lived”. I am sure he learned something new with me, the need for better imaging? That a tiny bubble could cause more harm than he knew before? And he was brilliant and oh I was home in 3 days!.

I never pinpointed a calling, but continued down this path of one thing after another. How I managed to have an amazing, powerful, dynamic career on just a high school diploma is beyond me. I was blessed with an exciting career and financial stabiliy from my hard work. And I was blessed with one amazing supportive husband who never waivers in his love for me. At age 55, when I really began to be able to sock the max into the 401k I started with 5 dollars in the 80s, I could no longer do it....the fatigue was too much. I told my husband if I were my boss, well I would fire me!

Thankfully, in the 80s single and aware what a mess I would be in if I had a lengthy illness or accident. I jumped on the opportunity to buy into a long term disability insurance plan. It was oh $1.25 per month. Then I just kept paying into it all those years, and that was huge when I could no longer work. It will continue to pay me until 66.

So I am a weird case and hard nut to crack and really need to write a book. One simply cannot make this stuff up! I pray if you have the scleroderma it is a milder form, Such as mine.

Take care and dance like you never danced before!

gwillistexas profile image
gwillistexas in reply to Suekloo

Wow! You are one amazing lady. God has definitely been by your side every step of your journey. He walks beside each of us every day, but I believe he stayed extra close to you. He never falters from his love. Many nights before I go to sleep, I give all this to him because I know, as we all do, each day is unpredictable with our condition or any other. Your story is a big inspiration for those of us who haven’t had things go quite so wrong. I’m going to keep a special place for you in my prayers. Please stay in touch. 🙏🏻🌹

Suekloo profile image
Suekloo in reply to gwillistexas

Yes, I leave it in hands and when I reflected over my entire life last year, while slowly learning how to eat, walk. Write,type again in the hospital. I was amazed at how everything has come to be, through him. It was not luck, he prepared me for what was to be later and I was open to it all. I am grateful for his strength and love.

I can do all things through Christ, who strengthens me.❤️🙏

gwillistexas profile image
gwillistexas in reply to Suekloo

Suekloo...😊amen!🙏🏻

KevinHall10_ profile image
KevinHall10_ in reply to Suekloo

Hi there, I wanted to ask u ,when the dr. Dx you in 2012 was it for pbc or cirhorris? I have been sick since my 20s also. Dx. With PBC in 2015. My Drs. Alway Dx me with depression. I am 62 now and thought I was crazy all these years. The neuro dr found this by accident when I fell and had a head injury. I told her how I felt and she did a whole panel of lab test, then referred me to a liver dr. You know how that goes. Very frustrated, I am in stage 2 and have other autoimmune things going on. I have not been feeling well for a long time, but the last two weeks I have felt destend and puffy. I have a call in to my liver dr, but I wanted to ask you your Dx because it seemed if it was Dx PBC it agrees send quickly it seems. I am on a gluten free diet already. Hopping this belly will go down.thanks for the ear. Pat

Hi happy0507

Are you in the UK? If so whereabouts. My consultant has indicated she might like to try me on this drug. Quite expensive so I think one has to jump through hoops a bit for NHS funding. Will you be taking this along with URSO?

happy0507 profile image
happy0507 in reply to IOW-gal

no, I am in the USA. Yes I still have to take the URSO along with it

happy05...are you referring to taking Ocaliva?

yes

happy0507...oh I understand about the hoops to get on it. Was very lucky that my GI is connected to a company who works directly with Intercept Pharmaceuticals. They assist patients who have no insurance, or their insurance will not cover it. I got lucky there. Hope all goes well for you.

You may also like...