How are ones coping that are experiencing advanced fibrosis and cirrhosis?

[Ktltel]

Hi everyone, Stella here. I haven't posted a question for awhile. This particular question may be too personal for some to respond to. But, if you want to share please, please, do.

I find myself now almost 5 years into my PBC diagnoses. How time flies. Doctor says I've had it unknowingly for many years. Anyway, I'm in late stage 3 fibrosis as of 1 1/2 years ago. So, my MRE test on the 30th of this month could "easily" find me in stage 4 somewhere. But, I feel pretty good otherwise. Fatigue, yes. Occasional URQP, yes. My labs are good, everything in normal range except my Alk-phos which was 151. I guess as this disease trods on, I'm just wondering how those PBCers out there who find themselves in late stages of fibrosis or even in cirrhosis are doing? Are you working or not? Are you having difficulties? What meds or trials are you on or in? We're all different and respond differently to our treatment etc., but, we share to learn from eachother, we share to encourage eachother too, and we share to warn eachother even. How are you all doing?

Stella❤

[butterflyEi]

Dear Stella so good to see you on here although sorry to read of your concerns. I hope you will find yourself no further forward after your tests.I was diagnosed in 2006 but had problems for about 10 years prior.,in the UK we don't seem to stage although I sus4some get staged. My last alk.phos was 102, laboratory range 40 to 150 but I think that is the lowest I've been for a while. I'm retired but keep myself busy, unfortunately I am an itcher so take Rifampicin Sertraline and now Gabapentin to control it. I notice with the passing of time I get dry eyes and mouth.

I use the PBC Foundation 's app to keep a track of symptoms etc.

I remember your husband was poorly. I hope all is now sorted for him.

Have you had your vaccine yet? Hope all went well if you have. Where I am currently staying the vaccine available to me was Sinovac which gave me no problems.

Nice to see you here, keep well.

Best wishes

[Ktltel in reply to butterflyEi]

Good to hear from you. Yep, had my vaccinations. Thanks for asking about Joel. He's doing pretty good. Just had a physical...so far, so good. Have you tried a tanning bed for the itch? I read that helps some. I'm sorry that's happening😑. You sound up and positive just the same. 👏🏻👏🏻👏🏻 I'll check out the PBC app as well. Thanks for sharing. Very encouraging. Takecare.❤

[exhippie in reply to butterflyEi]

Dry eyes and mouth could be a symptom of another autoimmune disease-Sjogrens syndrome. You might want to see a rheumatoid doc to check that possibility out. I have both PCB and Sjogrens, the latter diagnosed only recently after blood tests. I take hydroxychlooquine and it seems to be controlling it.

[Rimeru]

My mother is stage 4 cirrhosis and she was put on Ocaliva two months ago, her average ALP was around 400 but after a month of taking Ocaliva it dropped by 100 points. She also takes Urso but was non-responder so Ocaliva was added. Since we could not find a solution to treat her itching, Ocaliva made it worse where she only gets maybe 2 hours of sleep each night.

[Ktltel in reply to Rimeru]

Hello, thanks for responding. I'm sorry to hear about your mom's discomfort with that itch😔. I'm glad Ocaliva is improving her numbers. If only they could help her with that itching. Like I mentioned earlier, I've read tanning bed treatment has helped some. You can't do it too often because of skin cancer scares I guess...but some relief might be better than none. I've never tried it myself. Thanks for sharing. Please tell your mom hello from a fellow PBCer. I hope she can get some relief somewhere soon...I know many are doing research on that itching problem. Hopefully some will join in with a recommendation. ❤

[butterflyEi in reply to Rimeru]

There is, I believe, a trial for a dedicated treatment for the itch. It may be called Seladelpar but not certain of the rest of the details. Perhaps your Mum's doctor knows of it or post on here to see if anyone knows more or alternatively email the Foundation to see if they can point you in the direction of the study.

[pbcgirl in reply to Rimeru]

I too was on Urso and after several years it wasn’t working well. Luckily Ocaliva became available here, and by adding it to the Urso I’m doing much better. The itch bothered me as well but my specialist prescribed cholestyramine (powder you put in water or juice) and it definitely helped me

I wish your mom the best.

[4pjx__]

Hey Stella! I was diagnosed in 2017 at 3/4. The ultrasounds say cirrhosis but biopsy said stage 3. Anyway, just had my labs the other day. The ultrasound came back no change but my ALP was 198. It's been in that area for about 6 months. All my other labs were pretty good. Doctor was not concerned. Said I am stable. So, I am going with that. I'm tired today. We've had a busy week.I don't work ..not a paying job anyway. Most days I feel okay. Hope 6ounare hanging in there.

Pam

[Ktltel in reply to 4pjx__]

Hello, Although I don't post as often, I do pop in to read questions and comments periodically. I've read many of yours. You too sound up and positive. I'm very glad most days are good/okay days for you. It's wonderful that your stable. I am stable in that, like you, my numbers are pretty stable. But, this fibrosis doesn't want to cooperate.. lol. It keeps moving onward and upward. You all give me encouragement ❤. Just keep plugging away. Thanks for sharing. I too will just keep plugging away. I guess I'm wondering what I can expect as my fibrosis gets worse. Maybe I shouldn't even think about that and just "do what I can as long as I feel up to it." I know others have said that's what they do as well. Take our meds,...deal with things (health setbacks)as they come, take advantage of the decent days and do what we can to enjoy those. ❤

[alpha3]

I don't often post on this site but always read the queries. I was diagnosed in 2013 and the consultant said I had cirrhosis. I try not to dwell on this, but just carry on with as normal a life as possible. At my last consultation, which was a telephone one, I was told that I had stable cirrhosis and that in future I'd be seen by a specialist PBC nurse. Anyone else come across this? I am coming up to my 82nd Birthday and feel pretty well most of the time. I do seem to get fatigued from time to time but this could be the age factor. I'm waiting for a Ultrasound appointment shortly as I postponed my last one in January as I didn't want to go into the Hospital because of my age and the Covid. I also suffer from dry eyes and mouth which seems to have got worse lately. Keep well everyone, we're all just trying our best.

[Ktltel in reply to alpha3]

Thank you for sharing. I hope your tests continue to be stable. What medications are you taking for PBC?

[alpha3 in reply to Ktltel]

I'm just on Urso, 750mg daily. I haven't seen the consultant for a while because of the Covid but I've had Blood tests at G.P.'s and an Ultrasound soon so hopefully I'll get results soon. I do feel for the young people with PBC, it must be so hard for them at such a young age. Maybe there will be a cure before long, we just have to keep hoping.

[Ktltel in reply to alpha3]

Thank you for your response. ❤

[Diane62]

Stella I was diagnosed as having cirrhosis well over a year ago, my ALP was 1700 but recent tests show 746. All in all I feel fine. I still work sometimes long hours. My PBC was diagnosed in 2009 but luckily hasn’t had a great impact on my life as yet. Diane

[Ktltel in reply to Diane62]

Diane62, Thank you for sharing that. I'm happy for you. Your alk-phos has improved and you are still plugging away at things. That's very encouraging. That makes me feel very hopeful and probably others as well I'm sure.❤

[Hils67]

Hi Stella,

I haven’t been on here for ages as I was just trying to get on with life, take my URSO and try and forget about PBC…however, my last lot of bloods has shown my ALP has risen up to 269, the highest it’s been since diagnosis in 2015.

With COVID I’ve not had a consultant appointment for over 18 months. At my last appointment the consultant was saying we might need to consider Ocaliva as the URSO seems to have stopped working, but I wasn’t keen due to side effects of itching. But I guess it looks like I’ll need to go down the Ocaliva route.

I don’t think I have any fibrosis yet…although I’m a year overdue for my fibroscan, but last one was fine.

I’m usually fairly positive and just get on with life, but this recent set of numbers coupled with an increase in liver flushes (or menopausal ones 🤷‍♀️) has made me feel really tired and a bit down in the dumps.

I currently work 4 days a week but am seriously considering dropping to 3 days as I really don’t enjoy my job and I’m sure that doesn’t help my general mood! It’s also in the back of my mind that I should do as much as I can to enjoy life as we just don’t know what’s around the corner…not in a morbid way, just in a general way.

I’ve just taken a couple of weeks off work on sick leave in an attempt to reset my well-being with plenty of yoga, being in nature, making jams, making soap (my hobby)…just doing things I enjoy to try and have some me time and some peaceful time to try and reset.

I hope you’re doing ok and are giving yourself plenty of tlc

Hilary xx

[Ktltel in reply to Hils67]

Hello, sorry to hear of the alk-phos going up. Glad you can take some time to recharge. Please keep us posted how you are doing. Thanks for responding. ❤