Hi everyone, i am a 21 year old female, diagnosed with UC at 2 yrs, auto immune hepatitis at 11 yrs, have been flaring with my UC for over a year now and just started my last drug option, entyvio in November and waiting to see if i am responding slowly to that. I was also tested for PSC maybe 7 years ago but it could change i suppose… My labs for liver enzymes came back elevated in feb, so i saw a hepatologist and he ran labs, came back negative for haptitis B and C, my AST and ALT came back down lower, BUT my alkaline phosphosates have increased into the 200’s since february. In the past, all 3 levels either go up together or go down together and this is the first time i have a lingering ALP level increasing more. i was super itchy for weeks a few months ago which had happened once before years ago, but that went away on its own. My doctor mentioned PSC and then wants to do an MRI to see…I am so stressed out and worried especially reading its not exactly treatable. Ive read that you need stents put in through a scope every few months… that you always need a transplant…etc. I know you guys arent doctors but i really need to ease my mind until that MRI happens (a month) and am just hoping its not PSC… anyone feedback? anyone know what it might be that isnt PSC who has UC or has had a similar history like this? DO you guys think that its that? ive basically convinced myself and shut down because i am a very anxious person and im having a hard time. Thanks in advance to you all… these groups can be really scary with what you read but also can be a great source for support and help as well.
Hi Nlapeyre and thanks for posting your story. I’ll be glad to answer your questions. First of all, there’s no need to get stressed out about PSC. There are many who have lived with it for many many years and have not needed a transplant. Each patient is different and the disease affects us all in different yet similar ways. It’s a very unpredictable disease for sure. I’ll just run down your list here.
- Stents - I’m sure you have read about stents, and yes if they are put in they will have to be removed every few months. If you come to the point this is brought up, I’d ask them not to put in stents unless absolutely necessary. They are a good way to get a bile duct infection that can put you in the hospital. We usually want to see balloon dilation done and avoid stents at all costs. I was diagnosed with PSC in 2011 although I’m sure I had it for many years prior to that. I never had stents put in and received my life-saving liver transplant in 2015.
- PSC is not curable at this point in time. There are things that can be done to increase quality of life, but there’s no outright cure or pill, etc you can take. The only cure for PSC is a liver transplant.
- Many PSC patients also had/have UC. Just because you have UC doesn’t necessarily mean you have PSC.
- There’s no way for sure to say you have PSC unless appropriate MRI imaging is done and for the most common form of PSC, large-duct, an ERCP exam is performed. This is where they go in endoscopically through your stomach into your bile ducts and can see inside them to identify the disease.
- I know all these things are scary to you and to all of us who have/had PSC, it was to us as well. PSC is not the end of the world, you can plan for your future, go to school, get married, have children, etc. etc. You just have to live your life to it’s fullest and when PSC slows you down, well you just get in harmony with it.
We will be here for you and with you through this entire process. One of the first things I would encourage you to do is to get an appointment with a hepatologist. This is a physician that specializes in the diagnosis and treatment of liver disease. This is not your local GI doctor. They can do many wonderful things to help our GI systems but you need a specialist to treat this.
Feel free to write back and we will do our best to help you.
Mark
PSC 2011 / Liver Transplant 2015
Thanks for replying Mark! I did see a hepatoligist and he was the one that ran that blood work and threw out PSC and suggested I get an MRI. So that is my game plan I just don’t know how to not stress about it in between then. Also another question, if you get there balloon dialation instead of stents, do you need to go in every few months for that too? You see , I am getting my citizenship in France and was planning to move there for a year but not if every few months I have to go under to get a procedure. If you could let me know about that it would be great. To your knowledge, anything else that could cause high ALP with UC, I u derstand you may not be a doctor but maybe have seen people talk about other possibilities . Thanks in advance :))
Hi,
With this being a new diagnosis possibly, you may get an ERCP and not need another one for a year or more. It all depends on how advanced the disease progression is. Your body will tell you when you need another one. You will have increased itching possibly, dull aching in lower right abdomen around to the right side of your back, increased bilirubin, etc. When I had those symptoms for very long, I had labs done and if bilirubin was up there around 4.5 or so it was a good indication I needed an ERCP. So you may have one done and not need another one for a long time hopefully.
Not sure about your UC question. One of the other moderators here on the forum Jeff has experience in that area. Hopefully he will respond. Take care!
Mark
Oh gosh I thought the liver was higher than the lower right abdomen/back and I’ve had a dull pain there for the last few days there and I was hoping that wasn’t the liver… but that is where that pain is, no other symptoms right now other than the high ALP and hep says he doesn’t think any damage has been there so far , also never had a drink in my life so I am sure that helps me a bit.
My bilirubin is at .5 right now if that tells you anything pretty normal ast alt but I have an ALP in low 200s right now
That’s a pretty low bilirubin for sure. Punch in your most recent labs to this MELD calculator and let me know what you come up with.
https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/
Mark
I got a 6 don’t know what to make of that
Well you are doing ok right now. Your liver is still working fine. The problem with PSC is that you take a perfectly healthy liver, add PSC which attacks the bile ducts of the liver preventing bile from flowing at the rate it should. Then due to lack of bile flow the liver cells begin to die because the liver can’t process the bile properly through the ducts which will eventually lead to cirrhosis. I believe when I was first diagnosed mine was around a 6 or 7. So you are in the early stages it appears. You need to get a checkup from your hepatologist every 6 months with labs and then they will do an MRCP annually to track your progress. In the meantime, if you start to have symptoms of a blockage, you need to contact hepatologist for labs and possible ERCP intervention. In the meantime, just live life as normally as possible.
One final observation, as your liver disease progresses and you get near to needing a transplant, you need to seriously consider getting listed in addition to the transplant center in California one out of state. From what I have been told, it is very difficult to get a transplant in California. Of course that may or may not be true when you get to that point. There are folks on this forum that can help you link up with a transplant center when/if that time comes.
Mark
Thanks for the info! Really crossing my fingers about the diagnosis and hoping it’s just from my hepatitis but the ALP is what worries me just a bit. I will keep posting and please give any more feedback anyone if you have it
Hi there. I’m quite new to PSC and this forum but when I read your post I wanted to connect. I too just started Entyvio in August for my UC and it has been a game changer for my UC over the past couple of months. It took about 6 months to really kick in so I hope it starts working for you too! But, my PSC has now flared up which was not an issue for me for years. I really hope it is a coincidence but curious if there’s any others on Entyvio that have experienced a flare in their UC symptoms? Good luck to you! I hope you find the answers you need!
Please go to Nayo Clinic in Minnesota they are the best in the world and they know a lot about PSC and liver disease!!
My husband has PSC and liver cancer, we went to Mayo Clinic in Minnesota he was operated on at Mayo to remove cancer tumor and repair a bile duct from PSC, he is doing amazing, he is 70 you are 21, go for it they are the best and will take great care of you!!
They will tell you exactly what needs to be done.
Best of luck,
Linda wife of PSC patient
Nlapeyre,
Sorry to hear about your diagnosis. Many of us have “freaked out” when we first were diagnosed with PSC. However Mark has given you some very good advice. Everyone has a slightly different course. I was diagnosed in 2005, and have only had 3 ercp’s in that time. The first was the diagnostic one, then 12 years later I had a balloon dilation and a stent placed (mistake! heed Mark’s comment), the third was to remove the stent one month later.
Its important to find a good hepatologist, stay healthy, exercise, eat well, enjoy life. The symptoms can come and go. I haven’t been itchy for years, although I went through an episode or two several years back.
Glad you came to the forum,
Steve
Steven
Hi Mark,
Ive tried using the MELD calculator but Im lost as to what INR is and how do I get that number?
Thanks for your help.
It is a blood test (it is also called PT/INR). If you havn’t taken that test, you can’t calculate your MELD-score.
Vasni,
Sorry I haven’t replied sooner. I’ve been in Washington DC this week speaking with members of Congress on the need for increased funding for liver disease research including protections for living donor transplants.
As Andreas stated, INR is the same as Prothrombin time (PT). It is a blood test that measures how long it takes blood to clot. A prothrombin time test can be used to check for bleeding problems. PT is also used to check whether medicine to prevent blood clots is working. Check with your doctor for this test, as they do not always run it especially at the PCP’s. Hope this helps!
Mark
Dear Nlapeyre,
Just to reassure you… I was diagnosed with PSC stage one in 1991 when I was 36 years old. In the intervening years I have slowly progressed (I am now 62 years old and somewhere in stage 3 or early 4, I don’t know as I’ve not had a liver biopsy in many years, but when I last had one I was stage 3). I have NEVER had an ERCP. (I have bi-annual MRCPs, MRI of the liver.) I have never had a stent or a balloon dilation. I have never been hospitalized because of this disease. My best advice, non-medically, is to take on day (or week) at a time.
I’m hoping your elevated liver enzymes are a coincidence but as someone said above, if not, we are all here for you. Get staged. If you are in the early stages, there shouldn’t be anything stopping you from going to France.
Best of care,
Susan
I really appreciate that. I appreciate all of you. But thanks for the effort of a positive message as I’m sure you all understand how stressful it can feel. I am also hoping that my age could be in my favor and that it is possible medical advancements could improve by the time I could potentially need a transplant. I also have auto immune hepatitis so my liver already isn’t perfect, but it’s also not damaged right now either. Hoping for the best for My mrcp nezt week and that everything was just random, but if not, I’m glad to hear that your disease progressed slowly for you and that it is possible, also possible for auto immune potential someday fingers crossed…
Hey There Nlapeyre
I can fully relate and understand what you are feeling and going through. I was diagnosed in January 2018. My liver enzymes in October 2017 were 545 for ALP, 200 for AST and 220 for ALT. When I saw that I skipped past all docs and connected with a hepatologist as this was not normal for me. So glad I did as within 2 months my diagnoses was complete. I had mass blood work (as you might understand by now!), ultrasound, fibroscan and the MRCP on January 4th showed mild stricturing of my bile duct and with all other blood tests pretty off the charts for my liver markers - PSC was my diagnosis. Of everything I read and researched, PSC never came up. I collapsed in total please tell me no… I lost my cousin to it a shy two years ago after a 20 year fight and I’m like, how can this be for a disease so damn rare?!
I may be 53, however, the shock, stress, freak outs, panic attacks, daily tears, daily not wanting to function for hours on end, sleeping for 12 plus hours, not being able to get out of bed some mornings until almost noon, wondering how to navigate as I’ve no past experiences to draw on … it’s a bitch of a ride and one we have to hold tight and trust the arms of those around us to get us through.
I struggled hard with having lived my life as a very healthy, successful single woman then to be diagnosed with such a rare and as I call creeping evil disease… one that I have NO control over beyond hope and being as kind as possible to myself and my liver that maybe I’ll be lucky to ride it out for 10-20 years or possibly more with little of no issue?! Bottomline, I felt a lot of anger and hopelessness. I’m a Capricorn in the true sense and this just shattered my reality on so many levels and then, how do I gather up those pieces that still fit and how do I re-build or discover or find new pieces to fill in the gaps to make us and our reality whole again?
Now to me a shy 3.5 months later. I just had my first week since November really where I “functioned” almost 100% like I use to. November and December 2017 were all about research and testing. January to current all about digesting my PSC diagnosis, researching, joining PSC groups like this (there are two FB groups). Jan and Feb - I think back and I have to say, I’m so very proud of myself. I am learning to reach out to others for support. There were times I worked through windows alone, but I found if I made a phone call it would break the cycle of that free fall feeling. If one person didn’t pick up, I’d call another. March, my third month I actually started to feel like I had a better grasp on it all. April, my current fourth month - the Reality of it all began to settle in. This has been a rough window and I’ve reached out here to express and the support I received was just what I needed to push forward to a new minute, hour, day, week. I still take it day by day, but that’s up from minute by minute. With all my research I interact on the FB sites and it has helped me to feel less “helpless”. Some of us prefer to just keep living our lives with our disease in the background which we address as needed. Others, like me, dive in and get involved not just in our journey but others.
You are spot on that even support IS overwhelming as there are always seems to be something that shakes our reality. What I have found, is that overtime, I appreciate everyone’s sometimes brutal honesty as I realize I am NOT alone - even if right now I really am working through it alone. Give yourself time to digest. If you need greater understanding research and work through the UGH that comes with but in time Knowledge overrides the Ugh and then we get involved and others stories give us strength, hope and understanding.
Finally - my motto for past 5 years has always been Keep Moving. I find that this worked well after diagnosis. Take those days or hours of down time. Process through the feelings of fear, sadness, anger, pure WTF and Why. Reach out and still keep your life moving as best you can. Understand it’s ok to let some things slide as in time, you will heal and move on. I know you will. You are 21. Your body is strong and will fight for you if you let it. Never discount how amazing and powerful our bodies our. These beautiful, if even frustrating, vessels that house our Souls.
As one wrote to me: Be Kind to Yourself, Love your liver.
It has taken me almost 4 months to embrace that saying… as I resisted having to. But I get it now.
Finally - I have met some wonderful people, one actually moved to my area for transplant and already we’ve been out to music, road trip around my life, met my family and tonight he will join myself and friends for a bbq - and this gentleman has been eligible twice for a transplant and each time his body fights back and here he is, hanging with me as time permits. His energy, fight, strength brings me the same. I will be here to assist as I can and continue to learn… and you know what, as hard as it is sometimes, I wouldn’t change a thing. Another person I will go ride horses with a couple hours away in May. Another we talk on the phone a couple times a month.
My feelings of complete hopelessness have begun to recede sweetie as I slowly return to Life. You reach out here anytime. Message me anytime. I’m here. I get it and so appreciate your raw heartfelt sharing. What you feel is normal and real and I promise you, over time with knowledge and trusting in your “gut” and docs - you too will move forward and this disease will become just another Life Challenge that the rare few us face - but we face together.
My new favorite Quote:
“Life is not waiting for the storm, Life is dancing in the rain”
Dance with me sweetie when ready - I’m here with you and for you.
Thank you for sharing your fear and confusion, and I want you to know I feel an amazing strength in you that I drew upon as I typed my message to you. Thank you for that - I needed a boost this morning myself.
Sending hugs and luvs your way - truckloads 
Blessings,
Jennifer
What a sweet message! I too am a Capricorn by the way! New Year’s Eve baby I am hoping there will be new developments in the medical world regarding this and also my UC in the next years because UC has been so bad for me over the last year and a new diagnosis is the last thing I can wrap my head around right now… day by day… I have my MRCP Wednesday. Thank you for trying to empower me and I hope you have a wonderful day