What stage am i in psc?

friends,

I read all the stories and information about psc and would like to know where i stand. I have had psc for at least 7 years when it shut my gallbladder down and i have a good specialist in Iowa city. I guess i read one thing and he is saying dont worry you may live to be 90. This totally contradicts all that i read. Long story... i know now the psc shut my gallbladder down 7 years ago, but the doctors forgot to tell me what the cause was until a couple of years ago. This is all new to me. How do i know how i am doing or where i am in what stage. Any help would be great. Wendy

I agree my daughter symtoms started 2 years ago. And recently PSC and colitis have been "confirmed". She is not to sick at all. Has been in hospital once but that was nearly 2 years ago. Liver results go up & down, Colitis is minor, but now on Pentasa for this. Maybe she has a mild case, she gets tired and thats when we know the bloods will be up. She eats well but not carefully, and has started back at the gym. Hope it stays this way forever she will be 19 soon good luck to you. We are new to and would love to know if there is any normal path of progression. ?

i wish i had info to share with you and help you, but im kind of in the same position you are. I hope someone answers us that really has some good input. Want to learn as much as i can to stay ahead of the game. I am a mother of 2 and would like to kind of know what the future hold. good luck to you also and prayers to everyone. This is such a rare disease that not much is for sure. Wendy

The thing about PSC is it is such a rare disease. I know I began symptoms of fatigue at early age of 24. PSC cases Effect people different, so it is hard to stage progression until you start getting into serious effects such as Bacterial infections, ER visits with chills and fever and of course jaundice. I am on transplant list and i am 37 and my liver team tells me in males that study’s have shown highest progression of PSC is an average age of 38. Depending on how serious symptoms are usually liver biopsy and MRCP’s can help see what condition the liver is in. So for the 19 year old the main thing I remember is fatigue and recovery time after strenuous work outs or physical labor. Ask doctors for diet plan or list of foods that are liver friendly . Being young sometimes you think you can take on the world and eat and drink whatever but if for certain you are diagnosed with PSC begin eating right foods and absolutely no alcohol. I have seen many people with PSC in clinic and stages of symptoms are consistent but there are people that are living everyday life after being diagnosed with PSC with regiment of meds and diet.

So the staging can be a bit of a misnomer. Traditionally, it's measured in four stages based on progression. Really simplified: First stage is initial scarring of the liver, second is fibrosis, third is portal to portal scarring and disappearance of ducts, and 4th is end stage liver disease (need for transplant). The thing is, there is no real set progression and it can vary. Technically, I have stage 3 PSC (cross portal fibrosis, loss of liver function, cholestasis) but I'm much more impacted in my smaller bile ducts, which means that my large bile ducts are still open and my liver works ok (also much less at risk for cancer).

Chris is right in that its such a rare disease, its tough to follow a specific progression - many people are really different. I've been stage 3 since diagnosis 3 years ago, but have slowed the progression. Studies have shown its traditionally ~12 years from diagnosis to MELD.

What I found most helpful, honestly, was to stay off of the webmds of the world (support sites like this are a bit different) and consult with your doctor. Figure out if you can get in any experimental treatment regimens, ask your doc about holistic treatments, and watch your body. Most important thing for you to do is feel healthy. There are folks on this site that take no drugs but do lots of holistic treatment and seem to do great. There are those like me that try aggressive treatment with immunotherapies and have responded really well, too. Find what works for you and most importantly, remember to listen to your body.

Hi

I was diagnosed with PSC on the 22/12/2011.At this stage I was in need of a transplant. I had the flu for three weeks and could not shake things off then I went yellow overnight with a Bilirubin count of 257 micro moles (Range 0-17).

After investigation I was informed that people can have PSC for 20 years but unfortunately I have had the disease for at least 18yrs without knowing it.

So I think it all depends on the individual but I do not think many people will last more than 20 years without major treatment.

Joe O'Donnell

David Feldman said:

So the staging can be a bit of a misnomer. Traditionally, it's measured in four stages based on progression. Really simplified: First stage is initial scarring of the liver, second is fibrosis, third is portal to portal scarring and disappearance of ducts, and 4th is end stage liver disease (need for transplant). The thing is, there is no real set progression and it can vary. Technically, I have stage 3 PSC (cross portal fibrosis, loss of liver function, cholestasis) but I'm much more impacted in my smaller bile ducts, which means that my large bile ducts are still open and my liver works ok (also much less at risk for cancer).

Chris is right in that its such a rare disease, its tough to follow a specific progression - many people are really different. I've been stage 3 since diagnosis 3 years ago, but have slowed the progression. Studies have shown its traditionally ~12 years from diagnosis to MELD.

What I found most helpful, honestly, was to stay off of the webmds of the world (support sites like this are a bit different) and consult with your doctor. Figure out if you can get in any experimental treatment regimens, ask your doc about holistic treatments, and watch your body. Most important thing for you to do is feel healthy. There are folks on this site that take no drugs but do lots of holistic treatment and seem to do great. There are those like me that try aggressive treatment with immunotherapies and have responded really well, too. Find what works for you and most importantly, remember to listen to your body.

thanks so much for sharing. :)

Wendy, I asked my doctor this question at my last visit. "What stage am I in?" She said, well, you have cirrhosis so that means automatically that you're stage 4. It just sounded like it was a blanket stage that we all arrive sooner or later. I was diagnosed with PSC 7 years ago, too. And it was my GB that tipped them off --- because when the surgeon removed it, he took a look around inside and saw problems with the liver. During surgery he contacted the liver team at Univ. of Colo. Hosp. and they told him to do a biopsy and draw blood after surgery to get liver function levels. Still, though, it took 8 months and 3 ERCPs to accurately diagnose the PSC. I think the GB problems actually helped me, so the docs could make a clearcut diagnosis. Anyway, you're probably at stage 4, too, Wendy. You get regular CT scans, right? They look at cirrhotic changes - one of many things they are checking. Best of luck to you. Oh, what is your MELD? Mine is only 8 now, but it has been quite a bit higher in the past. PSC is The mystery disease! :)

scott, i havent been able to get an answer to "what stage im in?" my two kids were with me at visits and he would just say dont worry about it and live your life. As for a MELD,, i have no idea. how do i find this out and what does it mean?

danabee said:

Wendy, I asked my doctor this question at my last visit. "What stage am I in?" She said, well, you have cirrhosis so that means automatically that you're stage 4. It just sounded like it was a blanket stage that we all arrive sooner or later. I was diagnosed with PSC 7 years ago, too. And it was my GB that tipped them off --- because when the surgeon removed it, he took a look around inside and saw problems with the liver. During surgery he contacted the liver team at Univ. of Colo. Hosp. and they told him to do a biopsy and draw blood after surgery to get liver function levels. Still, though, it took 8 months and 3 ERCPs to accurately diagnose the PSC. I think the GB problems actually helped me, so the docs could make a clearcut diagnosis. Anyway, you're probably at stage 4, too, Wendy. You get regular CT scans, right? They look at cirrhotic changes - one of many things they are checking. Best of luck to you. Oh, what is your MELD? Mine is only 8 now, but it has been quite a bit higher in the past. PSC is The mystery disease! :)

I have emailed my doctor and asked some questions. what stage am i in? what is my meld? why are others getting ct scans and ercps so often. Thank you everyone for your input, i guess i wasn't watching out for myself as well as i should have been. i have a well known specialist in iowa city that i trust, but i still need answers to whats going on. Living kinda blindly.

Wendy, if you don't know what a high standard of care is, how would you even know what to ask or expect in good care? I'm glad the group is helping. It helps me and has helped me for years (psc-support@yahoo.com). Both the groups are really great, good info, great people. We're all in this together, Wendy, and don't forget that. And education is an ongoing process. Esp. with a rare disease like PSC. Best to you, Danabee



wendy said:

I have emailed my doctor and asked some questions. what stage am i in? what is my meld? why are others getting ct scans and ercps so often. Thank you everyone for your input, i guess i wasn't watching out for myself as well as i should have been. i have a well known specialist in iowa city that i trust, but i still need answers to whats going on. Living kinda blindly.

danabee, I understand what you said. I guess i didnt want to sound stupid. I have never been sick my whole life. I am 42 and this is my first real problem. I dont even hardly ever get colds. I was hoping to find some answers here because i feel like i am bothering my specialist when he could be helping others.

Wendy, you pay your specialist, right? Then you're his Number One patient when he's with you, and even more, outside that time he's with you personally, his job is to think about how best to treat you. You need to build your relationship with him based on that premise of "customer service." But more than that, really. The doctor-patient takes time and trust to build. If over time you feel you don't trust his ability to care for you properly with regard to PSC and everything that goes with it, and if you aren't learning more from him (because the Greek term "doctor" means "teacher"), then you would need to look for another doctor who knows more about PSC, cares more about you, and will teach you about your condition and what kind of care you should expect. You deserve the care and focus of your specialist. He may be giving it to you already. Just say thank you! and ask more questions, expecting answers. I fired a GI doctor who was performing ERCPs on me - but things would go wrong, and I didn't really like his superior, egocentric attitude with me. Yep, fired him. And my hepatologist supported me in doing it. She found me another GI specialist in ERCPs who was the new *star* on the block, and he was fantastic. It's really difficult having a disease like PSC. It took me years to really get used to it. I'm not kidding. I just couldn't believe it. So I really understand what you are saying. But it's not a *death sentence* and the average wait time (not really just waiting either) from diagnosis to transplant is about 18 years. Yes! You have a lot to do in that time! Being in these groups is invaluable. I don't know what I'd do without the people and their knowledge and support here. Hang in there, Wendy. We're all rooting for you. Remember this group being with you the next time you go see your specialist or contact him by phone.

wendy said:

danabee, I understand what you said. I guess i didnt want to sound stupid. I have never been sick my whole life. I am 42 and this is my first real problem. I dont even hardly ever get colds. I was hoping to find some answers here because i feel like i am bothering my specialist when he could be helping others.

benY , i am not an anything. I do take vitamins to keep healthy thats it.

But BenY, why would she need or want to be on Vancomycin? I don't think she mentioned anything about infection or symptoms like that. The Big V is usually held out for MRSAs and hard-to-hit things like that. Anyway, maybe I missed some part of the discussion? Wendy, if you're on no meds and just take vitamins, hallelujah! You are blessed.

Wendy - my son has just been diagnosed witth PSC and colitis , and the first thing I asked was what stage and how long. We live in the UK and are very fortunate to live 20miles from the best paediatric liver and gastro hospital in the UK in Birmingham. The doctors there said that they couldnt really stage (not sure if this was just my son or in general) as it is difficult to know how people respond to treatment or how inidividual bodies will respond in general. Like some of the others have said I have found this group so valuable because I realise now it's not my fault, I'm not the only one who thinks immediately on leaving the doctor of all the things i wish i'd asked , and wanting to know all the answers!!!! And also so many people have sent me kind messages of support! Rooting for you too from the UK!!!

Wendy,

Forgot about your original question about staging. If you have cirrhosis, according to a recent conversation with my hepatologist, you are in stage 4. They can tell that by CT scan and by biopsy. But I think the CT suffices. If you've had PSC for 7 years, it's a good chance you're in stage 4. But that has no bearing on your MELD score and sometimes not even your symptoms. Your liver may be functional enough so that you don't have portal hypertension, esophageal varices that would result from that, ascites, lymphedema, and all sorts of other symptoms that would indicate a decreased functioning of the liver. Just my 2 cents.

Wendy

Ask about diet. Ask about supplements. There are many things YOU can do to help yourself. I've actually reversed progression of my disease.

Ask about salt and red meat. Ask about WHITE: potatoes, rice, pasta, bread.... Ask about supplements: iodine, vitamin c, d, probiotics, milk thistle, fish oil, a good multi... Ask about what oils to use: coconut, olive and flax. Ask about eating FAT: when we eat fat foods, the liver produces more bile. When the ducts are twisted, the excess bile tends to stay in the liver causing Cirrhosis. That is what we FEAR MOST.

Diet absolutely matters. We have to work at it. We have fun, we laugh and yes we cheat...we make sure it's worth it though. Hugs and have a great Holiday weekend: mona