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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Diagnosed yesterday

Hello. I’m a 32 year old single lady who is also an optometrist (eye doc). I would like to get married and have kids one day. I was just diagnosed yesterday by MRI. I was diagnosed in 2005 with autoimmune hepatitis and 2008 with ulcerative colitis. My colonoscopy was normal and have been in remission since 2006 from the autoimmune hepatitis. Just recently, end of July my liver enzymes randomly started going up again. My hepatologist ordered a MRI of my abdoman because he suspected PSC. I’m getting a liver biopsy on Thursday to make sure I still don’t have active autoimmune hepatitis. He said we will go from there after we get results of the biopsy. My dad passed in 2014 with Hep C and I’ve seen him go through hepatic encephalopathy and it was horrible! I’m scared. I’m praying a treatment will come out soon. I’m a religious person but I’m upset with God right now. But I know there will always be worse cases. I just don’t know what guy would want to date or marry me once I tell them about my health issues. :frowning: Is this really a slow progressing disease? Has anyone had success with milk thistle or low dose naltrexone or vancomycin? I’m trying to stay positive. I’m so glad I found this forum!

Hello Idoc and welcome to our growing community of PSC patients and their families. We are sorry for your diagnosis but want to assure you that you have found a good group of individuals willing to help in anyway we can to provide the information and support during this time in your life. The disease progression is different in every patient. Some do go for many years from diagnosis to transplant but then there are those who go a relatively short amount of time from diagnosis to transplantation. Mine was about 4 years, but I believe I had the disease for many years but just didn’t know it for no symptoms were obvious. Regarding HE episodes, I have not heard of that happening very much with PSC like you see in hepatitis patients although that doesn’t mean that none have, it’s just not a common part of our discussion. I for one never had HE episodes. I hope you will not have to face that. I am sorry for the loss of your dear father. Yes, there are posts on the site of some success with the three things you mentioned, but none of those is a cure for PSC.
I would encourage you to just go on with your life, plan for that marriage and just take one day at a time. There are many ladies that still have children even with a diagnosis of PSC. Your hepatologist will guide you all the way. I’m glad to read that you have a hepatologist and not just a GI. This is most key in the managing of PSC. Have you had an ERCP yet to get a conclusive diagnosis of PSC? And what about your labs, have you checked your MELD score. Let us know what you find out on that. Here’s a little online calculator to find out your score. https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/

Once again, welcome to the group. We look forward to interacting with you more in the days ahead.

Mark
PSC 2011 / Liver Transplant 2015

Thank you for your support. My hepatologist ordered PTT/ INR since I don’t know what that value is. My other numbers are: bilirubin 0.2, serum sodium 142, and serum creatinine 0.59. I’ll let you know my updated numbers with the PTT/INR as well. He’s reordering the other lab work as well so doing that again. Here is my report. Also I will start taking milk thistle today! A drug for PSC is in phase 3 right now! Here is the link about it! I will live each day to the fullest! I’m so happy to hear success stories like yours! https://www.google.com/amp/s/medicalxpress.com/news/2017-06-successes-hitherto-incurable-liver-disorder.amp
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Also one more page

and he did not order any other diagnostic tests. He said MRI is enough

Hi Idoc- if your PSC is pre scarring which you will know once your biopsy results I’d suggest Vancomycin which has been effective for my 18 YO for the past 6 years. Good luck and be strong.

Hi Idoc. My daughter was diagnosed in 2013 (13 yrs old back then) with UC (colonoscopy) and PSC stage 2 (liver biopsy), negative for AIH. She also had an MRI (MRCP) scan that also confirmed the PSC diagnosis. She has been on Vanco ( per Stanford protocol, Dr. Cox’s trial) for the past 3 years. Her liver was border cirrhosis in 2015 (diagnosed through a Fibroscan test) and now in Feb 2017, her liver is normal (scaring reversed). She is doing well with no clinical symptoms of both UC and PSC. However, she never tested positive for AIH. Did you test positive for AIH lately? I’m thinking maybe your PSC has an autoimmune component in which case, it might be respondent to steroids. Have you been tested for IgG4 (indicator of the autoimmune component of the disease)? Please do not worry, you will get there. Lots of patience, help from the people around you and…lots of love:). Daniela

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Hi Idoc,
I was diagnosed with PSC in 1989, bile duct cancer in June of 2005 and transplanted in December of 2005. From 1989 to the present, I met my wife, raised three children who are now all in college, and other than a 3 month recovery period following the transplant, I have worked full-time in my career as a nursing home administrator. My faith has been my rock. And I have always tried to maintain a positive attitude and have tried not to let my health struggles get in the way of living my life in a meaningful way. I have been very blessed and my story is not always the norm, but I hope my story gives you encouragement.

Hi. Thank you all for the encouragement! Fortunately, my AIH is very mild from my liver biopsy. My hepatologist comes back on Monday to discuss the next step in what medication I should take. I started dating someone and we’ve been sexually active. Is it ok if I go back on bc pill? I’m on Junel 24 Fe. Any women who are on the pill with no elevated enzymes? I’ll ask my doctor too.

That’s wonderful to hear and gives me hope and strength to face the future with my daughter with PSC. Thank you for mentioning your faith. It’s really all in Gods hands and though we must do do our part we pray that God does what we cannot and the professionals have knowledge to guide us to all the difficult decisions and directions we must take. I’m praying for them too as they find new ways to help all of the PSC patients. My life and heart for them has been forever changed. Thank you for sharing.
Mollie

I have been told to stop using the pill and my heptologist reccomended an UID instead, since that lives in uterus it will not affect the liver. But it does last 5 years!

Hi Idoc,
Wanted to share my story with you to give you some encouragement on pregnancy with PSC. I was diagnosed shortly after the birth of my first son, 2 years ago at the age of 32. Late in my pregnancy I started experiencing terrible bouts of unexplained itching. I was diagnosed with cholestatis of pregnancy, something I had never even heard of. I had my baby via c section 2 weeks early because of it. I had a physical shortly after my son was born and my liver enzymes were really Elevated still. Long story short, I ended being diagnosed with small duct psc (I was showing no scarring in ducts) About a year later, I found out I was pregnant again. This time, I was diagnosed with cholestasis of pregnancy again but much earlier around 20 weeks. I continued taking urso the whole pregnancy. The itching was pretty bad at 30 weeks so my OB decided to put me in prednisone and it worked wonders! As a part of the cholestasis treatment, my son was a scheduled c section at 37 weeks. I have 2 happy, healthy babies! I hope this is encouraging for you! It’s important find a obgyn that has a specialist in office to help you treat cholestis if you end up developing it! My last mri now shows slight scarring on my left duct, not sure if that was pregnancy related or just something that is inevitable with the disease. Either way, my heptologist encouraged my to have babies and everything is great with them!

hi Idoc. I don’t have much experience with PSC as I was just diagnosed last week. After the doctor’s appt I heard this song on the radio by MercyMe “Even if”. Give it a listen if you want. It has become my go to tune since last week.

Hello to my new friends and family on this blog,
My name is sami I’m a 37 year old female from DC area, my account was just approved so I’m here to get some advice, share my story and if I can provide any help or support.
So to begin my story, starting in 2015 I had mild leukocytisis which is elevation of WBC and was consistent for two years finally my hematologist ordered a bone marrow biopsy that was Normal thanks God and white blood cells went back down finally after two years to normal . I was fine up to a month ago that I started having upper abdominal pain I related the pain to my new surgery in April for ovarian cyst removal but pain persisted had ultra sound and diagnosis was enlarged liver and my family doctor ordered CT and that was normal too. But I wasn’t satisfied with the answers and made an appt with a hepatologist she ran all sorts of blood tests: my Smooth muscle antibody was positive and that was suggestive of auto immune hepatitis and all the other enzyme levels were upper limit normal. I had MRI with normal results as well. She suggested I may have heart issuess and ordered a heart catheterization. I did right and left heart cath which is very invasive and results were all within normal limits. Liver enzymes were still all upper limit normal and pain persisted and ended up doing liver biopsy and that came out as zone 3 mild fibrosis and no autoimmune hepatitis. Last week I did MRCP and they found strictures all around common bile duct intra and extra hepatic and they are not sure what it is. Some doctors have said it’s PSC and some said diagnosis is not confirmed till I have ERCP. I have all these procedures with in the month of October and got married in that month as well as it was planned from a year ago and unfortunately it wasn’t fun because I was in pain from liver biopsy and heart cath. I’m very upset and devastated I think my leukocytisis from two years ago was starting of my liver issues and it wasn’t diagnosed. I’m scared of ERCPs complication which is pancreatitis and also this whole disease I know will be a much worse roller coaster than I have been riding for the past month. I’m normally very calm and strong but I have lost hope and all my dreams of being a mother and more seem like a dream at this point. Has anyone here got MRCP and was not diagnosed with definitive PSC and after ERCP diagnosis has been confirmed? I appreciate you taking time to read my story and give me some advice

Sami,
Thank you for your post and welcome to our community. I will write more later but just to give you one piece of information.
ERCP is the gold standard to diagnose PSC. Once they perform the procedure and clear the blockage, you will feel better in a few days. Just make sure the doctor performing the procedure is associated with your hepatologist or transplant center. Don’t allow your local GI to do this procedure.

Mark

Dear I doc please stay away from birth control pills I develop cysts constantly and have IUD and had to still take BC pills . Esterogen has the worst effect on benign nodules/ hematoma seen in the liver and also AST/ALT levels. Since I stopped them my enzymes are better of course I’m worried about my ovaries having cysts again and I just got married on October 27th hoping to have kids but everything is on hold now . Like you I went to a professional school and am a dentist. I worked very hard 6 days a week 10 hours a day to pay off student loans and help my parents. Waited the longest to get married and have kids and when I did bam this is what I hear . I’m devastated but have to stay strong . This website is helping me a lot and I hope we all get the miracle of a new drug that saves us .

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Thank you for all your stories and advice! Wishing you all a Happy Thanksgiving!

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A very happy Thanksgiving to you as well Idoc. Just take one day at a time and live your life to it’s fullest. Your body will let you know when the PSC flares up but until then, just enjoy your life and the work you do to help folks see clearer. My daughter 25, just recently had Lasik surgery and is doing so well. Seeing 20/15 in both eyes. Take care!

Mark

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Good news are my enzymes are almost normal except (Alkaline phosphatase) is 157. AST is 36 and ALT is 40. I went to another doctor for a second opinion and he wants me to do the ERCP since he’s not sure if I have AIH, PSC or overlap. I’ve been on budesonide since October and cellcept since November. I have the ERCP scheduled in a few weeks. I’ll let you know how it goes. I’m scared but I’ll be under anesthesia.

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Idoc,
I hope all goes well with your ERCP. Hang in there. Let us know what they find.

Mark

Hi Idoc. Looks like good news! Wonderful!! I too hope that your ERCP goes well. I have had a couple with no complications whatsoever. And you’re right. As soon as they roll those drugs on, it’s all good. Hang in there, lady, and keep living large!
Doug