My name is Dale, I’ve been signed up here awhile but I spent so much time reading I never got around to posting. I thought it was about time I post something, and maybe do some more research before my next check in with the doctor.
I’ll try not to go too deep into details, but on New Year’s day in 2015, 3 weeks prior to my 30th birthday, I was pretty much incapacitated by chest pressure and upper back pain, making it hard to breathe and motivating me to visit prompt care, digestion troubles followed.
They ran my blood and found the 3 primary liver numbers were around 10X normal. I lost about 2 lbs a week for the next 6 months, nothing would stick to me until I stopped eating practically everything but chicken. After oodles of HIDA scans, breath tests, and diet changes I finally got a referral to an outside gastro guy named Lyons in Gig Harbor. When I went to see him my numbers had all come down to normal, but I was still getting gas attacks periodically, so he sent me for an MRI in December.
The MRI revealed some possible beading in my ducts, which threw the PSC red flag. Hearing I have this nasty business was pretty heavy news for XMAS, but Lyons put me on 500mg ursodiol twice a day and my symptoms seemed to vanish. I was sent for a liver biopsy for my birthday, which is a terrifying adventure when the meds they inject you with are designed to “relax” you and do the exact opposite, but the results were described as “unremarkable”.
I still haven’t had enough elevated tests to technically be diagnosed if I understand correctly; I guess you need 3? The ursodiol has definitely helped though, and I assume we’ll be doing another MRI to see how the ducts look in the next few months.
I don’t think I have any UC symptoms that often accompany PSC, and I’m not really sure what more I can do at this point. I’ve been reading a bit on the vancomycin treatments and wondering if that might be something I should investigate, as it sounds like it’s more effective the earlier you start, but I’m concerned about unknown adverse effects it may have.
Hi Dale,
Thanks for your post. Do you have a copy of your labs where you can run your MELD score? I will post the link at the end of this reply and you can enter your numbers yourself. Just having lab tests done alone does not return a diagnosis of PSC. It is a combination of labs, an MRCP (MRI of the liver and vital organs). Sometimes to be absolutely sure they will do an endoscopic ultra sound but what would really confirm the diagnosis would be to have an ERCP done. This is where a specialist will go in endoscopically through your mouth down through your stomach and into your common bile duct. They will explore all your the bile ducts of your liver and will be able to confirm the diagnosis. I would strongly recommend that you skip the GI visit and asked to be referred to a hepatologist. This is a physician that specializes in the diagnosis and treatment of liver disease. Most GI doctors are not qualified to give a proper diagnosis especially of PSC. If you can’t get the referral from your PCP doctor, just drive over to a major hospital near you that does liver transplants and ask for an appointment. Most will let you self refer. They will then run all the needed tests to get a proper diagnosis. Please let us know if you have further questions and we are here to help. Here’s that link I mentioned. Keep in touch and let us know how you are doing.
I’m not sure I have an INR number available. I believe they ran one before my liver biopsy but I don’t know if I ever saw the results, just that they said it was normal.
I’ll ask about the hepatologist. I know my gastro guy sees other PSC patients so maybe he has a good one and just hasn’t pushed me that direction yet.
Are you totally knocked out for an ERCP? Whatever they used try and twilight sedate me for the biopsy didn’t work at all, even after they gave me a second dose. Trying to get a camera down there while I’m totally awake might give me PTSD. lol
Dale,
I too had some difficulty the first time they did an ERCP on me. I was not conscious but they said I was rather restless. After that they always put me under General Anesthesia. Just ask the doctor about doing that. The ERCP procedure is a very invasive but effective procedure. Please make sure that the physician doing this on you does this every day. Don’t get an average local GI to do this. You need one preferably that works at a major hospital that does liver transplants and such. They will have advanced endoscopy departments that do this all the time. I had 5 in all over a 4 year period prior to transplant. There are a number of YouTube videos you can look up to watch the procedure. It does help your liver numbers go down temporarily if you have PSC and will restore a degree of quality of life early in the disease process. Take care.
This link discusses diagnosing PSC, and other links agree. ERCP is a somewhat invasive procedure with significant risks (big one is pancreatitis). It’s my understanding that many Drs don’t like to do it just for diagnosis. Diagnosis is best done by MRI, there’s pretty good agreement that MRI is as sensitive a diagnostic tool as ERCP, and beading is what results in the diagnosis. (In my case diagnosis was done when I had my gall bladder out.)
You are certainly correct Bob about the ERCP being a very invasive procedure. While MRCP certainly is an excellent tool in diagnosis the ERCP is an extra good step especially when there is a question. And yes, it can cause pancreatitis. I was fortunate to have an advanced endoscopy specialist that always did my ERCP’s and I only had pancreatitis once and it was not bad enough to be hospitalized. I would not allow a regular GI doctor to perform such a procedure on me. I strongly advocate only a specialist that does this procedure day in and day out to tackle such an invasive procedure. The reason I suggested ERCP was when I first started having liver issues my first MRCP was diagnosed as pancreatic cancer, but the endoscopic ultrasound and the ERCP disproved that diagnosis and gave the correct diagnosis of PSC. Each case I know is different.
I just clicked on the link you provided and in the paragraph dealing with how PSC is diagnosis I give this quote. Formal diagnosis is usually made by cholangiography, an X-ray test involving injection of dye into the bile ducts, or by a MRI. The only way to inject dye into the bile ducts is through the use of ERCP.
Seems that you are still in limbo. Mark is right,you need a liver specialist. A regular gi won’t cut it. I was diagnosed after one ercp and have two since then. It is a great tool but has some possible complications like pancreatitis. Psc will try your patience, your endurance and your sense of humor.
The guys gave great direction already… A clear diagnosis, if possible will save you efforts in the long run obviously. It’s worth it to get a second opinion - it’s YOUR life. My husband was also in limbo for awhile (Diagnosed with P.S.C and U.C. as a boy. Transplanted in 2015 at the age of 32.); Stanford Medical Center was saying he may have autoimmune hepatitis and California Pacific Medical Center leaned towards P.S.C. He was diagnosed using a biopsy and ERCP.
We’ve had countless ERCP’s. The equipment would be going in through your mouth (totally ‘invasive’) but you can ask to be knocked out. Google will make it scarier than needed. I will say, try to find a doctor that preforms this procedure often. The gastroenterologist my husband saw for years was fine but after going to the transplant team’s gastro doctor, who does this procedure several times a day, we saw a huge difference in post procedure comfort. We’ve gone out for burgers after an ERCP with our new doctor! With the prior, my husband would be on the sofa eating jello for a day or two.