Diagnosed with PCB stage 4 urso effective?

[Suzie38]

Hello,

I'm new here and recently diagnosed with PCB stage 4. My specialist has given me urso but since my diagnosis i've read so much about PCB and almost al scientifical articles show that urso has no effect in the advanced stages of the disease. Are there more people who have also been diagnosed in stage 4 and with whom urso had a positive effect? I would also like to here how long others have been in stage 4 (who are, just like me, diagnosed within this stage) without developing signs of decompensation. At this moment i'm just so worried about my life span.

[SuziRae]

It's quite a freaky thing when one first hears PBC. I was not given a stage, just told advanced. That was 3 years ago. Not a smidge of worsening since then. Change your diet, exercise and tons of water a day. I go every 6 months for ultra sound. Urso is keeping us alive imo as well. Good luck. Try not to stress. We're here to listen

[IOW-gal]

Try not to read too much on the Internet. It's not always accurate or up to date. This is a much better place for information and support. You can always ring the PBC Foundation for help. Try not to stress out too much. I was told when I was diagnosed that you will probably die with PBC and not of PBC.

[4pjx__]

I was diagnosed stage 3 severe fibrosis about 5 months ago. I have had some pretty good improvements in my liver function tests since starting Urso. My last check about 6 weeks ago they said I was stable. My skin color looks better. I would say it's a little more pink where before I started I felt like my skin tone was looking a little grey. I'm still a little tired but I think a lot of days I'm not AS tired. A lot of my issues I thought was due to no longer being a spring chicken. I am 63. So, I have to have scans twice yearly now. I think I am starting to accept my dilema. I do still worry about it but I am beginning to find a mental place to put this. After all, I am getting on in years and almost everybody has some kind of issue. I mean, so what if you have to take a couple of pillseveryday? It could be so much worse! Try to keep to a good diet, get some excersize (walking or yoga is what I like) stay out of the wine and enjoy the rest of your life.

Please let us know how you are getting on!

Pam

[gwillistexas in reply to 4pjx__]

Well said😊

[Suzie38 in reply to 4pjx__]

Thank you for your reply, Pam! It wouldn't be a problem for me to take some pills everyday if they only could guarantee me that i'm going to be 80 with my own liver. I am 66 and last year i've lost my husband and my son, and my daughter isn't just ready to lose her mom within a few years . That's the reason that i'm looking for some positive stories, people who are diagnosed within stage 4 and remain stable for years. Like I said, i've read so much articles (I understand that this wasn't a good idea, but now I have the knowledge...) in which they speak about an average life expectancy of 4 years, once cirrhosis is established, what would mean that i'm too old for a transplant by that time.

[4pjx__ in reply to Suzie38]

Suzie38, do you have varices or ascites and itching? Or do you mostly have no symptoms? If you respond well tomthe Urso it may give you more time with you daughter and your liver. Everyone is different and there isn't really any way to predict what will happen. I have seen some people say that the Urso has stopped the PBC in its tracks. So I think there is plenty of reason to hope. I am very sorry to see about the losses your family has suffered. I can only imagine the grief that you carry.

Stay well, stay hopeful!

Pam

[Suzie38 in reply to 4pjx__]

They found out I have pcb trough elevated liver enzymes and an enlarged liver. I haven’t recognize any symptoms before, also no itching, although I have severe pruritus since my start with Urso. My ultrasound showed only cirrhosis, no ascites and that has been confirmed by the results of my Fibroscan. Next week I will have a gastroscopy to check on varices. Thank you very much for your reply, it made me feel a lot better!

[gwillistexas in reply to Suzie38]

Mine was diagnosed through elevated liver enzymes as well. Rule of thumb is once off statins, enzymes should return to normal. Didn’t happen, so Dr then tested Mitochondrial M2. No biopsy thus far, only abdominal ultrasound which was normal & fibroscan showed mild/moderate fibrosis. Labs monthly to check progress with Ocalvia.

[Ottley3]

Hi Suzie! I agree with what everyone is saying. I was diagnosed this year (i’m 49) in early stage, caught by a random blood test. Biopsy confirmed PBC and some evidence in my bile ducts but my overall liver is in good shape (4.4 fibroscan). At first i was responding well to Urso but now not so much so i will start on Ocaliva soon - finding the prescription hard to get. Was shocked by the dx too and have changed my diet not because my doctor said to but because i wanted to do something about it - eating well, exercising often - feeling great. I think i notice my symptoms the most when i have not been drinking a lot of water. So, cheers! Trying to keep PBC worry in the back of my head but it is not always easy!

[Q8Cooper in reply to Ottley3]

Ottley,

I am on Ocaliva in the USA. What country are you trying to find Ocaliva in?

[Ottley3 in reply to Q8Cooper]

Thanks! Also in USA, seemed like something involving my insurance needing to find a matching pharmacy that could provide it. Has taken about a month, but I should have it by Wednesday. Hoping for good results!

[Q8Cooper in reply to Ottley3]

Acredo is the pharmacy I use. It comes by mail. I think that is the only place in the USA you can get it. I could be wrong.

Best of luck!

[gwillistexas in reply to Q8Cooper]

My Ocalvia comes from a Pharmacy in So Dakota,

[Suzie38]

Thanks for all your reactions! It is just the cirrhotic stage what I find difficult to cope with, but maybe the urso will do it's work

Ottley3, I hope that Ocaliva is working for you!

[GaelOB]

I was also stunned to find I had PBC, stage 4 at my diagnosis 2 and a half years ago. My doctor prescribed Urso, and my liver numbers vastly improved, as did my energy level, fogginess, bone aches and my skin color. However, it did not stop the continuing hardening of my liver, or the enlarging of my spleen. I really believe i have had the disease for a very long time, and had i been diagnosed earlier, the Urso would have slowed the progression to the barest crawl. We have discussed the possibility of a liver transplant. I would encourage you to take the Urso. While pricey, it certainly has improved the quality of my life. Every body is different. Give yours a try with this med. I saw improvement within a week, and my numbers dramatically improved within 6 months. Now if there was a way to stop the progression......

All the best to you

[Rockie]

Does anyone know if it is possible that the Immune system can attack our hearts. I have PBC and thyroid autoimmune and have now starting experiencing problems with my heart. Just thought may be someone here can help. I was hospitalized for a few days.Left lung also chronic bronchitis

[gwillistexas in reply to Rockie]

Rockie, I was told autoimmune can attack any organ. Hopefully that’s not your case😔

[Rockie]

Hopefully not my heart and heart problems related to something else. I am moving on to 77.

[DonnaBoll Administrator]

Hi Suzie! I know how scary Stage 4 can be. I've been there as well. First of all, being in Stage 4 does not necessarily mean that your life is over. I know several women who were in Stage 4 for many many years. One woman was diagnosed in Stage 4 like you and has never progressed. Taking your Urso does help maintain bile duct function, keeping them open for the bile to flow through. Continue to take it, please! Make sure you are on the right dose - 13-15mgs/kg of body weight. It's always dosed only on your weight. Life live! Take one day at a time. Continue to have liver enzymes drawn every 3- 6 months. Are you having Fibroscans or MRI's done regularly as well to watch for cirrhosis changes- increased stiffness of the liver? Are you confident with your care? Make sure your doc knows about PBC. is he a hepatologist?