Newly diagnosed with PBC

[Becks880]

Hello

This is my first post - I was told I had markers for PBC way back in 2017 after a routine blood test flagged up elevated liver enzymes.

I was referred to a liver consultant who monitored my liver yearly. My GGT was always hovered around 120 but last month after a routine blood test it was raised to over 700 and also high ALT and ALP, which were always within the normal range before.

I've never had any symptoms but do feel tired all the time but just put that down to my age (58).

I've now just about to start Urso (500mg twice a day) and feel so scared reading all about the side effects.

I do enjoy a glass of wine socially and feel gutted that I can never have a glass of wine again while on this medication. But understand I need to get my liver stabilised.

I've never had any symptoms or been in any pain and generally, in good health and very active, it's scary to think this autoimmune is lurking in the background.

My question is how long does it usually take for the Urso to start working for PBC and stabilise your liver?

Thanks for reading this far 🙂

[Flid]

I’ve been on Urso a since end august so 2.5 months. I recently had a follow up blood test and have dropped enough to be noticeable but not normal level yet. This, I am told, suggests I will be a ‘responder’. I am told that as long as you are lower at the 1 year point then you are classed as responding to the tablets.

I have had no real problems with side effects , other than about 24 hours of upset stomach the first week. I take my dose with my main meal in the evening, actually during the meal, about 2/3 way through so that I have something before and after medication. This seems to cushion it and I really don’t notice anything.

My hepatologist said I can have the odd glass of wine. I have never been a drinker, only really having the odd one on special occasions or on holiday. We were in France two weeks after I started Urso and I had the odd small glass - just not WITH the medication by my choice. I am not a regular drinker but will continue to have one occasionally on the rare occasions the mood strikes. I probably drink 2-3 bottles of wine per year on this basis and only small ‘tasty treats’ each time.

It’s not so scary once you settle into it. Just really a question of mindfulness. I try to avoid chemicals and e-numbers and certainly am eating cleaner than before diagnosis. I try to help my liver along by not stressing it with too much work cleaning up after me!

[Becks880 in reply to Flid]

Thanks so much for taking the time to reply.

I know it’s early days and that’s good news you have no side effects, hoping for the same and that I am also a responder!

Even better news I might be able to have a glass of wine on holiday and special occasions.

I eat very healthy and cook mainly from scratch and avoid all UPF’s.

It’s all been a bit of a shock to admit something is wrong with me when I feel absolutely fine.

Thanks again 🙂

[Flid in reply to Becks880]

I don’t advocate drinking, just to be clear, but I was told I could still have one occasionally. Honestly, all drinking is unhealthy but most of life indulgences are, and as long as I am all but the-total 99.9% of the time I won’t worry about it. I don’t smoke and have good habits and frankly life is too short to worry about half a glass a few times a year!

[Becks880]

Occasionally, is what I was hoping for but def not an option at the moment. My LFT are too high.

[gillrich]

Tired all the time fatigue is one of the big markers for pbc. Urso is a safe drug but can affect how much you poo !I take my tablets 2 in morning 2 at night ans I'm OK

Pbcfoundation.org.uk is your best bet Goe always accurate a d up ro date information on all things pbc a chsr set up nearly 30 years ago

Never feel lonely on your pbc journey contact them xx

[Becks880]

Thank you gillrich, I have just registered with the PBC Foundation. Now to get my head around starting the Ursol.

[Sister65]

I have been on urso close to a year with no significant side effects after first few weeks. My only real symptom prior to diagnosis was absolutely horrible relentless itching, which has abated. I second the recommendations for the pbc foundation and also strongly recommend Dr. David Jones's book on PBC. You can get it on Amazon and it is extremely comprehensive yet understandable. Good that you are working with a hepatologist, most general practitioners still know very little about this condition. As for the alcohol, ask your doc directly and be very clear about what you would like to be able to do. We all have to make that decision based on so many factors. My doc would not answer until I had a fibroscan done so he could know extent of liver stiffness/damage. As there was none and I was very honest about how much I drank in the past and what I wanted to do going forward, he did not prohibit wine entirely, but stressed the word "occasionally. " I can live with that. See what your doc says after a frank discussion. Ask for (demand really) a fibroscan so you have all the facts. And best of luck. This disease is a pain but it is not a death sentence.

[Becks880]

Thanks Sister65. I'm just waiting for a Fibroscan, my last one 3 years ago was fine but who knows? As I mentioned my LFT are scarily high all of a sudden with no symptoms. GGT 500 and ALP 400! It's all been a bit of a shock and I suppose I've been in denial that this autoimmune will actually take hold but it is. Def no wine for me for the foreseeable!

I'm starting the Urso after the weekend as I have to work and worried about the side effects.

I have ordered the book - arrives tomorrow! 🙂

[Sister65]

Yeah, your numbers are significantly higher than mine were but after a few months on urso, I am within normal range. I found the book as well as YouTube videos of Dr Jones really informative. Another really helpful thing I did was taking part in the "Empower" study out of the Univ of Alberta in Canada. All via email. It is an ongoing study so you may be able to sign up if you qualify etc. All sorts of information. Gist of study is to see how meditation, breath work and movement helps with management of the stress associated with chronic illnesses, one of which is PBC so you get videos, etc specifically related to your condition. It helped me feel more in control of my own feelings around having a chronic condition. I have never had to take any medication in my life and prided myself on my health so I found the whole thing to be like a personal affront. So, if you feel stressed, it's worth looking up

[Becks880 in reply to Sister65]

Hi Sister65, I had a look at the Empower study and it looks interesting. I'm in the UK, I can't see anything to say you have to live in Canada to take part? Like you, this is all new to me and I've found it difficult to process after always being very healthy and fit. I have ups and downs with the anxiety of how bad my liver is, especially being asymptomatic. I started Urso last week and so far (fingers crossed) feel ok! Will let you know how I get on with the Empower Study.

[ZenZone in reply to Becks880]

Hi Becks880, Yes you can enroll in the Empower study without having to reside in Canada. I am a Canadian residing in Ontario and currently enrolled in this program and I know there are others in the program who are from other countries.

Empower program has two major components.

1) One is the energize portion which provides many self help tools in the toolkit to mitigate stress through mindful exercises, breathing and meditation practices. A s well they provide live zoom sessions for optional exercises and other interactive sessions with the research team depending on which arm of the research you are placed in.

2) The other provides life skills to address / cope with the related outcomes that we may face on our PBC journey.

3) It also features many current resources and interviews with clinicians who are in the forefront of research in this field.

I am enjoying and learning a lot from joining the program. Hope to meet you online as part of the EMPOWER program when you enroll.

[Becks880 in reply to ZenZone]

Thank you ZenZone

[OdinsMom]

It can take 6-12 months for urso to really start working. That being said I've been through stage 4, transplant and recurrent now. My hep has no problem with the occassional alcoholic beverage. The only time I couldn't was when I was heading to transplant. Any chance you were ill just before your blood test? I hope your dr has done another blood test to validate the high numbers. The side effects aren't as bad as not taking it - I couldn't tolerate urso and there was nothing else -so transplant

[TanGram]

Hello. I too was diagnosed at 58. Ill be 62 this February. I had no symptoms except very light colored stool almost white. I went to the Dr., liver tests were high. Retested, still high. Referred to liver Dr. and began Urso. It took me almost one full year to get back to normal numbers. I come to this site at least once a month to read, help and ask for help. Everyone is amazing. We're in this together. I also had a liver biopsy in the beginning to stage my disease. Stage 1. I'll have a liver scan in June. 😁 don't be scared...easier said than done, I was scared for sure. If I was to give you any advice,Its eat as clean as you can, keep the stress low and watch your vitamins for deficiency 😁

[pbc-zero]

Hi. I have been diagnosed for 2 years and refused both Ursodiol (after severe abd pain) and Ocaliva after reading side effects. I take milk thistle which helped my ALT and AST and later went on Fenofibrate which brought the Alk phos back to normal. So far, so good!!

[transatlanticlife]

Hi! I just wanted to add that my doctor told me that the danger of alcohol was more related to the portal vein and once my imaging showed that to be normal, I was also cleared to have the “occasional “ drink. Best of luck to you!