I am a new member tithe goup on this site and wanted to share some good news. I was diagnosed with PSC in 2005 and after 6 months of not being able to diagnose my disease, I found a local liver specialist that belonged to our church and the club I taught tennis at. He diagnosed me right away and had several patients with this disease. He started treating me with Prednizone, immuran and Ursodiol. The Prednizone was a high dose to begin with but over time we decreased it to 5mg every other day and 2.5 on the other days. My liver enzymes were back in the normal range, I believe in 6 months and ave remained there all 7 years. I am living a perfectly normal life so far and resounding beautifully to the treatment. I had my first liver biopsy 5 years ago and it showed my liver in stage 2. I just had my 2nd liver biopsy in late October it show tht there was no progression and it was exactly the same as 5 years ago. Unfortunately, my doctor retired a few years ago to go into politics and is now a congressman in Washington. But I feel so blessed to have had him as my doctor, that we can’t the disease fairly early and that my body is responding to the disease. My hope is that this treatment might work for some of you out there.
Hi Vikki…It’s good to hear that things are working for you. I was diagnosed with PSC in 1998. I have an excellent gastro guy taking care of me here in Adelaide, South Australia. My story is pretty similar to yours, an early biopsy test in 1999 revealed serious liver damage and PSC…after many tests and trials and ERCPs I was treated with Urso…also a low dosage of Prednizone mainly for arthritis. In 2009 I underwent surgery for Crohn’s disease and now have an Ileostomy…Crohn’s cured. My liver situation is stable although I now I have been diagnoses with PBC (Primary Bilary Cirrhosis). My general health is good and my only issue is occasional itching. Transplant was a situation I was looking at in 1999 but thankfully things have improved significantly. It’s good to hear that our treatments are working and long may it continue. Wishing you all the very best of health in the future.
I appreciate the information. Just diagnosed so dealing with the news. Going to mayo in Rochester no one has offered prednisone. Will bring it up next visit. Have had 3 episodes of sepsis in Past year
From my knowledge and experience with my PSC, the therapy you describe is non-conventional. The fact that it seems to be working is hard to argue with, however, many people with this disease progress very slowly. Each of us should be asking our hepatologists what they know about such a regimen.
I had an excellent experience at the Rochester MAYO Clinic for a second opinion. Dr. de Groen was extremely thorough and spent hours with me face to face. The facility and organization at MAYO are also top notch! Bundle up and take your snow shoes!
Best Wishes to all of this site's members and readers for a HEALTHY New Year!
Vikki - That's good to hear. I was diagnosed 1 year ago and have had 12 procedures to date including a colonoscopy, multiple ERCP's and a big Gallbladder/Liver Seperation surgery. I've had a stent almost all year but it was taken out 3 weeks ago and now my liver function is that of a non-patient (normal). My question for you is, because you've been healthy for so long since diagnosis, have you been on any partcular diet and/or lifestyle?
PSC is a disease that, as most of you know, takes a long time to show outward symptoms. The Mayo clinic's websites on PSC have the most advanced information. I look forward to hearing from Linda Mcreynolds, or others who have contacted the Mayo Clinic, as to what the latest advances are in treating the symptoms.
Blood tests in my case done as far ago as 1995 showed abnormalities with the liver enzymes. Yet the first real distress came one year ago involving the beginnings of Ulcerative Colitis, (Often undistinguishable from Crohn's and Irritated Bowel symptoms) and swelling of the abdomen, legs and feet due to fluid retention.. Both these symptoms are under control with medication, the Colitis is more or less successfully treated with Salofalk /Mesalazine and Cholestyramine); the swelling is controlled with diuretics: Furosemide and Spionolactone)
These diuretics may, according to a Canadian study, lead to occasional, but severe night-time leg cramps. This has been the the case with me. See: http://archinte.jamanetwork.com/article.aspx?articleid=1108671
You may have to weigh the benefits of thed diuretics agains the occasional discomfort.
For a brief while I was treated with Ursodiol. Most gastroenterologists and the Mayo Clinic have stopped using this drug to treat PSC.
You will be in good hands at Mayo and you will feel like you were treated as a human being. I had a second opinion done with an ERCP to determine if I had bile duct cancer along with my previously diagnosed PSC. I was negative. Ten months later, in February 2012, I had a live donor liver transplant at Northwestern Memorial Hospital in Chicago. Wonderful place. I did not have long to live as I had PSC since 2000. My donor was my daughter's girlfriend from high school she had not seen for 15 years. She saw my need on a Facebook page my daughter created telling about my problem. God answers prayers.
That’s a beautiful gift. Youare blessed. How are you doing with the transplant?
This is remarkable.
I am going to share this with my hepatologist. I had a live donor transplant on 2/8/12 and do not have PSC any more. I got very sick and maybe your treatment could have helped me. I only had 10% of my liver functioning at time of transplant.
No, honestly I really don’t change my lifestyle. I have been an athlete all of my life including college tennis and was a tennis instructor p until 3 years ago. So in general, I have always led a pretty healthy lifestyle with healthy eating and a lot of exercise. But I truly haven’t changed my lifestyle other than quitting work 3 years ago and being a full time wife and mother. When I was working full time and had young kids, I will say that I was extremely exhausted.
Vikki - That’s good to hear. I was diagnosed 1 year ago and have had 12 procedures to date including a colonoscopy, multiple ERCP’s and a big Gallbladder/Liver Seperation surgery. I’ve had a stent almost all year but it was taken out 3 weeks ago and now my liver function is that of a non-patient (normal). My question for you is, because you’ve been healthy for so long since diagnosis, have you been on any partcular diet and/or lifestyle?
I too have been on the same treatment a combination of Prednisone, Ursodiol, and Imuran. The treatment has worked very well for me as well. I have an overlap of autoimmune hepatitis, which does not seem to allow for my liver functions to become "normal," but they are significantly low. I lead a healthy lifestyle- eating/juicing mostly fruits and vegetables and exercising three times per week. I have not always lead this lifestyle, like yourself, but since I have cut out fatty foods and increased my physical activity I have found that I feel the best I have in many years. I believe that diet has a very real impact on this disease and should be taken seriously. I hope you find yourself always feeling this way, your story gives hope to anyone for the possibility of remission!
Welcome. Congrats with the positive results you have seen. Blessings for the future. God bless.