My mother has done two MRCPs and they haven’t shown anything… she is pretty much asymptomatic the only problem with her is her LFTs her Alp is 3 times higher than normal and GGT is 2 times higher than normal.please tell me if this is psc or not?SHE HAS UC FOR +20 YEARS.ITS NOT ACTIVE THERE IS NO BLEEDING THE ONLY PROBLEM IS DIARRHEA. Any answers would be appreciated thanks
Those were my daughter's only symptoms and she has PSC. Her MRCP did not show anything but it had to be diagnosed by a liver biopsy. The PSC was very early stage 1. Now with her oral vancomycin treatment all her LFT are normal and her MRCP is still normal.
I have had three MRCPs that show nothing but my LFTs have been elevated for at least twelve years and I have had two biopsies that now show stage 3 PSC. I have never had a single symptom that I am aware of. The reason that it does not show on the MRCP is that (they think) I have a "small duct" variant of PSC. The small ducts do not show on MRCP. The small duct variant is generally slower moving and leads to less infections/symptoms. It can take decades to progress to cirrhosis. The only way to diagnose your mother, I think, is with a biopsy. The alk phos being three times the normal high range is a bit higher than mine usually is. Mine is usually slightly less than double the high number in the range and has been that way for twelve years (kind of up and down but never higher than double).
Based on the evidence you have, it is hard to say, but it would not surprise me a bit if your mom had small duct psc that has been progressing for decades and maybe it is at stage 3 now or even early stage 4. It could go on for another decade and even longer without real problems. Hard to tell.
Also, I had UC and a colectomy/jpouch twenty years ago.
Agree - my daughter has small duct PSC.
Only thing I can add is that I had a biopsy which confirmed the PSC before the MRCP… The MRCP showed the extent of the damage.
At first they thought the elevated enzymes may have been from gall stones which showed up in an ultrasound… So there can be other reasons for the elevated enzymes.
I hope you get an answer soon! Not knowing is like being in an extended limbo!
Hi Cactusgirl.
My sons doctors also suspect that he has early stage "small duct PSC"
He was diagnosed 2 years ago with PSC and UC and has been on Remicade for one year.
If you don't mind how did you convince your daughters doctors to try oral vancomycin. I fear about what the doctors may propose (ie surgery) when the Remicade stops working.
Ultimately I found new doctors. I did NOT want her on Remicade or any other biologic. Her colon is totally normal now without anything but OV. If you need to talk over the phone let me know and I can advise you further.
From what I understand, PSC is diagnosed by liver biopsy. The MRCPs are done every year or so to look for bile duct damage.
To Cactusgirl - Would it be OK for me to know how old your daughter is? How long has she been on Vancomycin? Best wishes - thanks so much for all of your posts.
She is 16 1/2 and has been on it for 1 year. By the way the radiologist who did her MRCP in August couldn’t even tell she had PSC. Liver biopsy usually only necessary for small-duct PSC
Elina,
My husbands MRCP was completely normal according to the Radiologist where we live, but continued high LFT's and ALK Phos resulted in a self referral to the Mayo clinic in Jacksonville. They diagnosed my husband with PSC the first day via MRCP with contrast. Dr. Keaveny, the head of the hepatology department, told us that the disease was very progressed and it was demonstrated on his MRCP his whole left lobe of his liver looked very diseased and obvious that he had had this disease for many years. I asked him how it was possible the MRCP performed at home in a well reputed large medical facility was normal, and he did not have a answer. Only he indicated that this did not happen over night and the damage has been there for years.
wow, this is good information. How is he doing? What is he now taking? My daughter is getting blood tests every month to monitor the disease so hopefully we will know if it starts progressing.
solsticeseeker said:
Elina,
My husbands MRCP was completely normal according to the Radiologist where we live, but continued high LFT's and ALK Phos resulted in a self referral to the Mayo clinic in Jacksonville. They diagnosed my husband with PSC the first day via MRCP with contrast. Dr. Keaveny, the head of the hepatology department, told us that the disease was very progressed and it was demonstrated on his MRCP his whole left lobe of his liver looked very diseased and obvious that he had had this disease for many years. I asked him how it was possible the MRCP performed at home in a well reputed large medical facility was normal, and he did not have a answer. Only he indicated that this did not happen over night and the damage has been there for years.
Hi Elina,
With only results for Alkaline Phosphatase (ALP) and GGT it would be a little premature to suggest that your mother has PSC. She may have, particularly given the association with UC, but she also could have a miriad of other things including a simple infection or a bit of a bug. It would probably therefore be worth waiting to see what the views of her doc are before speculating about PSC.
There are a few other associations that point towards PSC of some description, p-ANCA being one. However as with most other things that isn't entirely specific either. Its just part of a general pattern. The fact that the MRCP hasn't shown anything is a good sign. It doesn't necessarilly rule it out but if no strictures are seen on the MRCP and if the doc has eliminated everything else and still believes it could be PSC then it is more likely to be the small duct version as has already been pointed out.
Sorry if thats not entirely helpful. Best thing to do really is wait and see. Diagnosis of PSC tends to be a process of elimination.
Hi KrisM:
Thanks for your helpful reply. Could you please tell me what p-ANCA is? Because i really like to know what my mom’s problem is.and nowadays she just get a sharp pain in her right shoulder.she also has H-pylori which is a stomach problem. she has severe stomach pain in the middle of the upper quadrant which is where the stomach and the left lobe of liver is located and im not sure if it is h-pylori or liver related.and she has had an ultrasound which has shown fatty liver grade1.
Thank you so much for the reply , and I’m waiting for the answer.
KrisM said:
Hi Elina,
With only results for Alkaline Phosphatase (ALP) and GGT it would be a little premature to suggest that your mother has PSC. She may have, particularly given the association with UC, but she also could have a miriad of other things including a simple infection or a bit of a bug. It would probably therefore be worth waiting to see what the views of her doc are before speculating about PSC.
There are a few other associations that point towards PSC of some description, p-ANCA being one. However as with most other things that isn’t entirely specific either. Its just part of a general pattern. The fact that the MRCP hasn’t shown anything is a good sign. It doesn’t necessarilly rule it out but if no strictures are seen on the MRCP and if the doc has eliminated everything else and still believes it could be PSC then it is more likely to be the small duct version as has already been pointed out.
Sorry if thats not entirely helpful. Best thing to do really is wait and see. Diagnosis of PSC tends to be a process of elimination.
Hi again Elina.
ANCA stands for Anti Neutrophil Cytoplasmic Antibody. The 'p' bit represents the staining pattern when they are viewed through a microscope. The p standing for 'perinuclear'. Sounds a bit posh but really its just a way of describing what it looks like. If you do a search for ANCA on the web wikipedia brings up some good pictures so you can see the different types. ANCA is usually associated with other autoimmune diseases such a vasculitis. However it is also known to have some association with PSC. It isnt though a specific marker on its own.
Now, I'm not medically trained and what I say comes from what I've read over the years to try and find answers to various things I've been afflicted with. Most of which being of some auto immune association or another. I do notice that you say your mother has a diagnosis of some degree of fatty liver. I'm no expert on such matters but that could be why her ALP and GGT are raised as fatty liver can affect flow through the liver. Indeed, perhaps there is some blockage or stone caused by that which is causing the pain you describe. I am though guessing a bit there.
I also note the H-pylori finding. I've had that too but didn't know I had it. It was found by accident when I had my first endoscopy done. H-pylori is just a bug. I had it and had no symptoms at all, which I understand is not that unusual. I'd therefore be surprised if that was the cause of your mums pain.
Thank you so much!It was so helpful 
KrisM said:
Hi again Elina.
ANCA stands for Anti Neutrophil Cytoplasmic Antibody. The ‘p’ bit represents the staining pattern when they are viewed through a microscope. The p standing for ‘perinuclear’. Sounds a bit posh but really its just a way of describing what it looks like. If you do a search for ANCA on the web wikipedia brings up some good pictures so you can see the different types. ANCA is usually associated with other autoimmune diseases such a vasculitis. However it is also known to have some association with PSC. It isnt though a specific marker on its own.
Now, I’m not medically trained and what I say comes from what I’ve read over the years to try and find answers to various things I’ve been afflicted with. Most of which being of some auto immune association or another. I do notice that you say your mother has a diagnosis of some degree of fatty liver. I’m no expert on such matters but that could be why her ALP and GGT are raised as fatty liver can affect flow through the liver. Indeed, perhaps there is some blockage or stone caused by that which is causing the pain you describe. I am though guessing a bit there.
I also note the H-pylori finding. I’ve had that too but didn’t know I had it. It was found by accident when I had my first endoscopy done. H-pylori is just a bug. I had it and had no symptoms at all, which I understand is not that unusual. I’d therefore be surprised if that was the cause of your mums pain.