ALP Increase, stable MRI

My liver enzymes have been ok for the last 10 years ( I think ERCP fixed then something and stabilized my LFTs).
MRI has always shown mild psc effects eg some narrowing etc but generally fine.

Last month my regular blood test showed huge spikes. ALP 800, bilirubin 2.7, AST 160, ALT 240, GGT 500. I have been feeling fine.

Next week MRI showed no changes. Everything looks the same…Ultrasound showed echogenic nodule 1.8cm, perhaps hemangioma (generally harmless tangle of blood vessels I think).
CA-19 and AFP cancer markers were negative.

My hep said PSC is weird.

Anybody had similar experiences ie sudden huge spike in liver enzymes but stable MRI ?

Yes, happens all the time for me. I understand the high ALP is indicative of an issue (could be a blockage or sluge) and others potential signals of actual damage occurring (liver and/or other issues.

My ALP has never been at an 800 level (mid 500s).

I’ve had PSC for 28 years. UC for 16 years longer. Prognosis was for transplant in 1999, but careful diet and med regimen allowed that to be delayed indefinitely.

My UC is almost always in remission unless I eat a trigger food. So far, ERCP seems to work for me; I’ve had 4 to date, followed later by clear MRCPs (MRIs).

My ALP typically runs 800 to 1200 with near normal bilirubin (<1.5), almost always. Other LFTs run 2 to 3 times normal. MRCP also is typically normal, except when indicating an ERCP is needed, usually accompanied by a bilirubin spike, which has been as high as 30.

I’m very susceptible to acute pancreatitis from ERCP and always now inform procedure doc when giving consent for treatment. They can avoid my pancreas in their process and give some anti-pancreatitis meds, both of which work well for me. My most recent ERCP (08/2022) was actually done out-patient; all previous had required hospital admission.

So, my answer is, yes. In my case elevated ALP (>800) is often present with an effectively clear MRCP.

Best wishes to you in your PSC journey. As you are very aware, it’s no picnic, but with some blessings and good fortune one can live a mostly normal life.

Yes, this was my life for basically 10 years. Tho, my path did end in a transplant.

Always had high alp and clear ercps. I would get twice yearly cholengitis attacks, which were always fun, but the wheels came off eventually and the bilirubin increased markedly and then it was end stage before I knew it.

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Hi dmeyer4 great to here you’ve been able to manage so effectively. Can I ask what dietary pointers you followed to slow progression?

A nurse with dietary knowledge or training in the liver clinic educated me on the value of eating the right foods, and to avoid those that would affect my UC, and PSC.

Generally, this meant eating non-processed food, avoiding trigger foods, and getting as close to fresh as possible. For me, this meant a diet rich in romaine, kale, blueberries, flax seed, broccoli and as much organic produce as I could afford, including these items.

I limit my red meat intake, preferring fish, chicken and turkey. When I do eat red meat, it’s typically bison, beefalo or lean wild game, such as venison. I find it’s very hard to go out to eat and not get something that can make you sick.

Also, it should be mentioned I have a somewhat severe allergy to onions, fresh onions, dried onions or even onion powder.

This allergy took years to pinpoint, but now avoiding all types of onions, I no longer have the UC episodes of the past. It’s amazing how many prepared foods are discovered to have onions in them. Even some brands of pumpernickel bread.

Keeping my UC in remission has allowed me to eat small portions of fresh cabbage and legumes that are good for me, but were not possible when my UC was active. Keeping my UC in check seems to be the best way for me to also avoid PSC flare-ups.

Although sometimes controversial in medical circles, I do use a few supplements, but only from pharmaceutical or FDA-approved labs with appropriate certification. I fully disclose the supplements I take to my doctors.

This is what has been working for me. As our our colleagues on this site will tell you, PSC is not all that well understood, and the effects can be very individualized.

And as the car guy says, your mileage may vary. I have been very blessed in my journey, especially by those who shared with me what worked and didn’t work for them.

Thank you to all who have had the courage to set up this forum, to post, and to help me and others to beat this disease.

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Your hep is absolutely right-PSC is weird as it follows no patterns and is different for everyone.
It is so weird that our heath does not always accurately reflect our MELD score.

There are multiple side effects that PSC can cause-mine were jaundice, fatigue, weight loss, RUQ pain, itching. There are others that I never got, like HE, ascites, Varices.

There is no pattern as to who gets what. PSC will test your stamina, flexibility and sense of humor.