elevated liver enzymes

Herbgarden - my son feels healthy. He says "it is what it is". He's concerned for sure but has a firm belief that there is always someone worse and he finds the best in everything. He could have my liver in a moment if that would fix him. His ALP has been high. I am going to hang on to your confidence that a cure is around the corner. What tests did the mayo clinic perform to confirm the PSC for your son? Are they going to change any of his meds now?

canadamom: Mayo did labs, MRCP, and a MRE. The MRE measures Fibrosis and there are only 2 hospitals that are doing that type of test. MRCP is an MRI with a more detailed emphasis on the Bile ducts. Mayo didn't change any of his meds. They were elated that he is what they call an "Urso Responder". His labs all normalized on Urso. The doctors at Mayo seem to believe that there are different subcategories of PSC and the patients who respond to URSO, will have a better prognosis. We spent 18 months going from doctor to doctor being told something different by each one. I was fed up with the run around, so I decided to go straight to the experts at Mayo Clinic. Most doctors will never see a patient with PSC, but Mayo see's 4 to 5 people per day with PSC.

I was in hopes that they would prescribe Vanco for my son, but they decided not to at this point (since his labs have normalized). However, even with normal labs, I believe the Vanco could help put this disease in remission and help his UC also. Patients on URSO may have a better prognosis, ie...less infections, blockages, but it doesn't change or slow the progression of the disease. On the other hand, there IS evidence that Vanco has changed the progression of this horrific disease. I have been in contact with my son's local Hepatologist and he is willing to discuss using Vanco. We will see him on the 21st of May. He'll either give us the RX for Vanco or I'll find someone who will....PERIOD

His MRE was normal, meaning no stiffness of the liver. He is in a very early stage 1. Do you know anyone that has used Vanco for PSC?

He was diagnosed by MRCP and elevated enzymes. His liver biopsy was suggestive but not diagnostic of PSC. The MRE was normal, meaning no Fibrosis. He has 2 very small areas within the Biliary tree thst are dialated.

canadamom and Herbgarden...I am so sorry about your son's condition. We have a similar problem with our 20 year old son. In February after having blood work it showed iron deficiency and elevated liver enzymes (AP 475, AST 224, ALT 255). Note that these numbers fluxuated came down then back up but the original numbers were the highest. One of the latest were AP 463, AST 63, ALT 201.

He was treated for iron deficiency with IV Venofer and as of today is no longer anemic. We then went to our GI to treat the liver enzymes. He had an upper GI where they found gastric erosions which may have caused the blood loss. He had a CT scan where they found no abnormailites. He had a liver biopsy where they also found no abnormailities.

We then took him to Thomas Jefferson University Hospital were the Physician suggested a colonoscopy and MRCP. ( It took us weeks to get an appointment).

We had the Colonoscopy on Wednesday and he has IBD ( they could not determine type from the biopsy.)

He has his MRCP yesterday and since he has IBD we are scared as hell that he may have PSC.

Anyway Herbgarden reading your post has made me feel less hopeless so thank you. If you could comment on anything I would appreciate it as well.

Primary Sclerosing Cholangitis is what killed Walter Peyton.

UC can result in colon cancer, pancreatic cancer, PSC and there is a correlation to Sagittal sinus thrombisos which I had in 2010.

Lets be clear here; Walter Peyton died of Bile Duct Cancer. PSCer's on average have a 20-30% increased risk of developing Bile Duct Cancer.

On a positive note, Chris Klug went on to win an Olympic Medal after having a Liver Transplant, due to having PSC.

Ajnepa: I hope your son does not have PSC, but if he does, just do your research and don't read or believe half of what "Google" says. Join a support group such as PSC Partners Seeking A Cure. Liver Biopsies are not the standard for diagnosing PSC, because they can be notoriously inaccurate. The biopsy only measures a very small sample of tissue, therefore it doesn't paint a clear picture of what's going on with the liver and the extent of fibrosis. MRCP (a special MRI that focuses on Bile Ducts) is the gold standard. ERCP's are not routinely done unless there is a blockage, but ERCP's can look inside the bile ducts. I would advise against ERCP's if its just to diagnose PSC. There is no need for that when the MRCP can tell the doctors all that they need to know.

If your son does have PSC, you will learn very quickly that YOU will have to be his voice and advocate. Until I went to Mayo Clinic, I hadn't met with a doctor who knew enough about PSC to even carry on a educated conversation with me. If you are not comfortable with the results of the MRCP, then you may want to get a second opinion at a center such as Mayo Clinic in Rochester, MN. On average, they see 4-5 PSC patients per day. Last but not least, when my son was diagnosed, the only words of comfort that I could spew out of my mouth were these:
"There's a lot more to you than PSC and UC, and do not let these diseases define you".

herbgarden said...
Lets be clear here; Walter Peyton died of Bile Duct Cancer. PSCer's on average have a 20-30% increased risk of developing Bile Duct Cancer.

UC => PSC => BDC

Lets be even clearer : "In February 1999, Payton announced that he had a rare autoimmune liver disease known as primary sclerosing cholangitis, which may have led to his cholangiocarcinoma (bile duct cancer)"

en.wikipedia.org/wiki/Walter_Payton

"PSC has a significant association with ulcerative colitis, an inflammatory bowel disease primarily affecting the large intestine. As many as 5% of patients with ulcerative colitis may progress to develop primary sclerosing cholangitis and approximately 70% of people with primary sclerosing cholangitis have ulcerative colitis."

en.wikipedia.org/wiki/Primary_sclerosing_cholangitis

canadamom, Good luck and I applaud you doing every thing you can. I just had a 2nd 2013 MRI done on my daughter after twisting the eye doctors arm. I wanted to see if we could rule out a tumor on the optic nerve. He said it was the first ever MRI he had written and will be his last. I knew a woman who's daughter had one and she had to take a leave of absence and find the right doctors and the story ended very well.

I had a stroke ( well venus anyway sagittal sinus thrombosis ) related to UC and prednisone and despite being in the ICU and paralyzed I am now perfectly fine, in fact my lengthy typing in emails annoys co-workers but I am so happy to not be paralyzed I do not care and type away anyway...

Post Edited (aguywithuc) : 7/29/2013 5:13:59 PM (GMT-6)

ajnepa: My son's MRCP said basically the same thing.."Minimal irregularities in one of the bile ducts". I would say that your son is probably in the very early stages, just as my son is. Does he have any symptoms such as, itching, jaundice, abdominal pain, dark urine, fatigue? You may also want to seek out a second opinion if there is any doubt in your mind. However, if he does have it, he may never progress to the point of liver transplant. Its a very individual disease and the progression can vary from person to person.

Just remember that we are here for you if you should need us. I've been in your shoes and I know the shock and sadness that you are going through. Its a tough place to be in, and there are groups to help you through it. Take Care and don't hesitate to reach out.

Herbgarden...I forgot to mention his billirubin total (0.8), billirubin direct (o.4) and Albumin (4.o) are normal. Did your son have abnormal reading of these?

I have not been able to get the Vanco prescribed for my son yet...but you can research Dr. Cox and the studies that he has published on Vanco. I would print those out and take them to your doctor and discuss this with him.

Herbgarden....Thank you...I got the 2011 Stanford article on Vancomycin and plan on taking this with me to our  appointment next Thursday.

Why is this not wide spread? I read about the Mayo Clinic doing a trial on this. Were you aware of this? I mentioned this to my Doctor before and he knew about it but not for PSC.