Is it possible for Ursodiol responders to s... - PBC Foundation

PBC Foundation

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Is it possible for Ursodiol responders to stop responding to the medication in the future?

mmihhih profile image
mmihhih

That's my biggest worry. I am a responder now but I worry about the future.

37 Replies

Fortunately there are now two additional medications available for the treatment of PBC. There is also research into other drugs ongoing. If you have not joined yet The PBC Foundation is a patient voice for us and with their association with world wide specialists their information is up to date, it is free to subscribe although donations are helping them keep going in these difficult times. Their App is a useful tool which will help you have the confidence to stop worrying. PBC for most is a slow progressive disease and with medication statistically we have the same future as the general population. Go enjoy your life, relax take your medication and track your blood test results. I have been taking my URSO for over 15 years and I have a good few years left in me yet!😁

Sydgal profile image
Sydgal in reply to butterflyEi

Hi,

Can i ask what Stage PBC were you at time of your diagnosis ? Thanks 🙏

butterflyEi profile image
butterflyEi in reply to Sydgal

I have never been staged. Sorry

Hi there

Iv read that it is possible to stop responding to uso, Iv always been a nonreponder since dx. Tried a few clinical trial over the years. Now I have cirrhosis and been given bezafibrates which seem to keep bloods normal and don’t understand why they just didn’t give me them in the first place. 🤔

PBCRobert profile image
PBCRobert in reply to kimphoebe

It is only recently that bezafibrates have been proven to make a difference. So they are being used more often now, for all they are not licensed in PBC. There has been some benefit and we anticipate this will make a difference over a kong time.

Hi there, my response to urso wasn’t adequate so we added ocaliva to it at lowest dose and then up to 10m. That worked for me but there are other options your doc can look into as mentioned by others.

There are a number of ways to deal with worries.

1 is to look at the worst case scenario then try and work out the percentage chance of that actually happening.

Another is to live in the moment and to focus on the here and now.

If, and it is a HUGE if, the Urso does stop working it will be:

1) many years down the line

2) a gradual and spottable process

3) in a time when there will be many alternative care options, all of which will have data and science behind them

In the meantime, give us a call and we can talk through your fears. If you are non-UK we can set up a video call very easily.

Yours,

Robert

It’s easy to say “don’t worry”but you will anyway....what I can say from experience though is the worry will consume you until it breaks you. I was diagnosed 2.5yrs ago and it felt like my life was taken from me. I googled, I read everything I could about this disease and the medications, I even got my affairs in order and I was 38years old at that time. Urso wasn’t working for me and I had a breakdown because of it all. I went down at work and was taken to the hospital, throwing up, passing out, heart rate out of control. I ended up being on disability for seven months and on the cusp of anti-depressants. That’s what the worry and stress did to me - and after finding this support group, an amazing GP and specialist and attending grief counseling I’m in a good place. Worry is a useless emotion. Trust your doctor and take one day at a time only focusing on having good days. Like I said, I’m not a responder to Urso and have been on OCA for a few months and it’s been tough but it’s one day at a time. There are little doubts and worries that come up all the time (like my bloodwork every 6 weeks - that’s the most stressful for me) but I distract myself from that and it is what it is. If anything the stress and worry will make things worse.

The only thing you can control is the day you’re going to have when you wake up in the morning - you can’t control something a month from now or a year from now.

That is a very good and much needed reply for many, as far as the worrying. I always say I was a born worrier and after 66 years of life, you’d think I would have figured out it does no good and will only make you sick. I also take Ocaliva and my labs were excellent until about 6 months ago. So now, I worry it is no longer doing it’s job. But, my hep is watching closely. I had labs yesterday so I’m anxious to see the AL result. Have a wonderful day and thank you again. 😊

Meant “Alk Phos “

I know where you’re at with all this uncertainty. When I started Urso it looked like I was responding as my levels dropped at the start but then crept up again. I’ve been on Ocaliva for just about 3 months now and my levels again dropped in the first 6 weeks but my 12 week blood tests it barely went down....makes me get these false hopes that I’m responding and then wham - no I’m not.

I’m going to see what the next test results are in a few weeks and if needed we increase Ocaliva and do the wait-and-see game again.

Good luck with your results!! ❤️

Thank you. I’ve been on ocaliva since 2017. My ALP dropped dramatically within 2 months and stayed low for a long time. Hep mentioned going up to 10 mg but he is also interested to see if I meet the criteria for a clinical trial he will be in charge of. Good luck to you. Hope your results are favorable. 😊

Ktltel profile image
Ktltel in reply to gwillistexas

Please let us know how your labs turn out.

Stella❤

gwillistexas profile image
gwillistexas in reply to Ktltel

Well, from February 11th to yesterday, ALP went from 141 to 160. I not happy.

Ktltel profile image
Ktltel in reply to gwillistexas

Awe, I understand. Mine fluctuates between 150's and 180's. It's done that since 2016. But, good your keeping an eye on it. I have a bunch of tests after my 2nd covid-19 shot. So, end of April I'll re-establish a new baseline for my PBC. I'm nervous to see where things are. 😬 I feel ok. Occasional URQP front and back. So, we'll see.

Takecare,

Stella❤

gwillistexas profile image
gwillistexas in reply to Ktltel

I might not be as concerned if mine were fluctuating, but steady upward isn’t good. But I also understand, that particular test can also have something to do with the bones as well. Who knows. I hope you do well with the vaccine. I’ve not given in to taking it just yet. I’m allergic to many drugs and just need to sit face to face with one of my specialist’s and talk about it. Let us hear how you do with the second shot. Take care

There is a fractionalized alk phos test that can identify the 3 components: liver, bone, gastric (stomach). Your hepatologist might run it to see what is going on.

Thank you. I forwarded the results to him. Will see what he says. 😊

So, the response I got from his nurse was he had discussed with her, the week before, about me being in the clinical trial he is going to oversee. Said I would need to be off Ocaliva for 3 months. I told her I needed to talk to him and get more information and I wanted an appt to see him. That was Thursday. She said he is booked into May but would see if she could get me in. I heard nothing. I know he’s a great dr but if Ocaliva isn’t working then tell me to stop taking it. I’m almost In a fight or flight mode. One thing I don’t take very well is no communication from a dr. Anyway, that’s what I know for now

I think he would have to investigate more before concluding whether or not the ocaliva is working. As I said he has to identify first whether the higher alk phos is a result of the liver vs bone vs intestinal.

Yes...it is frustrating that you can’t communicate directly with him.

I don’t know what to tell you unless you can influence the nurse to get him to call you. Or maybe he will squeeze you into the schedule.

I’ve gotten appointments before where the front desk/staff say no availability until much later by just sending a note to the doctor and they get me an appt.

Or one time I was booking a follow up for 2 weeks later right after an appt and they give me one 4 weeks later. That time the doctor happened to come by the front desk so I said to him, I am trying to get an appt in 2 weeks like u told me to and there are no appts, what are you going to do for your favorite patient? He laughed and just told the office manager to put me in at 5 pm. Normally his last appointment is 4:30 pm.

Unfortunately, he is only here on Friday’s. He comes from Dallas. I’ll see if I hear from the nurse tomorrow then I’ll follow up. Thanks!

Maybe he can give you a telemedicine appointment over the camera. I did 2 telemedicine appts.

He can and we did during the Covid surge. I see my Intrrnist on Tuesday. I may ask him about the fractionalized Alk Phos test.

Great! He can run the test for you and send to the hep.

Yes. As far as ocaliva, after my biopsy showed a small area of bridging, I asked if he felt the ocaliva wasn’t working. He said it could be that I’m one who will naturally progress faster. So he needs to find out which it is and not leave me in limbo.

It is challenging to get definitive answers even for the experts. There is just not enough research. Hopefully he can figure it out for you. Be patient.

How is your fibroscan? Does it remain the same?

No. My fibroscan went from 9 to 12 in a year. That led to biopsy.

Yes...maybe he hasn't responded because he is not sure how to tackle it yet. Maybe the study will help him figure it out for you.

I know, but he’s supposed to be the best. My rheumy said he treats some of his patients and has never worked with such an intelligent hepatologist as Dr Mubarak. His credentials are awesome. I trust him. He’s just not moving fast enough, lol!

I think it makes it a little harder when they’re not in your city 5 days a week. But he’s nit too far away.

He is still looking out for his patients wherever he may be, I’m sure. All your records are accessible on line.

I know he is. He is very caring. 😊

My hep is ordering 5’ nucleotidase. It tests 5 areas.

Great...you will get answers soon.

Yes, and thank you. 😊

Sona_akb profile image
Sona_akb in reply to Ktltel

Hi StellaLong time no comments from you

Miss you

Hope you are doing well.

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