Hey everyone,
It's been four months since I was diagnosed with PSC. Since diagnoses I cut off drinking almost entirely but haven't made that many changes to my diet. In September my Alkaline Phosphatase levels were 1612, and October 30 they were 746. What levels are too high and how do I get these to lower? I hope everyone is feeling good :)
TKD, anything over 104 is considered out of the normal range of 34-104. My alp level on Nov. 3 was 264. I' m not convinced of the degree that diet can directly help- eating a balanced diet is one of the best things you can do at any time.
Your liver doc might be the best one to talk with.
Jeff
my alp holds pretty steady 225-260. I have blood work every month, my doctor said that's where it's going to be for me.I'm in the compensated cirrhosis stage. Not sure if diet can help you.
The latest research suggests that ALP within 1.5x normal is associated with much better odds of not reaching a PSC endpoint. So while we don't know if a drop from say 350 to 250 makes an appreciable difference, we do know that a drop from 250 to 150 makes a big difference.
About 30% of people with PSC are spontaneous normalizers - their numbers drop below this 1.5x normal value without having to do anything at all. About 40% of people on Urso drop their ALP below this value. Subtracting out the spontaneous normalization, this suggests that Urso is helping about 10% of the PSC population to lower ALP below the known significant threshold (this is pulled from two retrospective studies aggregating previous Urso studies). Anecdotally people have claimed diet has helped to achieve lower ALP but this may in some cases be attributed to spontaneous normalization. Oral Vancomycin is either a sure bet or not depending on which study you are referencing (100% below 1.5x normal for Stanford studies, 12% Mayo), although this discrepancy is likely based on the different protocols used. Vedolizumab is another off-label option but the clinical trial for PSC is ongoing and I don't think we have any results yet. Various other options are in the pipeline but are limited to clinical trials.
My blood test results sheet indicates that 30-130 U/L is normal for Alkaline Phosphatase. My average is 255 with Urso. Prior to Urso, it was in the 500 range. What changes do you think would you like to make to your diet?
Low salt, low fat( avocados are a good source of fat), low sugar (it's still 10 tsp. per day), low spices (nothing that starts with the letter c like cumin, chili powder), low bread, laughter as a goal, daily exercise, and daily sun. That's the secret to my health after 17.5 years of PSC. But now, I have been recently told I have cirrhosis.
What did you do to reduce your ALP from 1612 to 746?
Hi Lara,
I'm sorry to hear that you have been told that cirrhosis is happening but 17.5 years is a long time! I hope that I can follow your lead with the diet thing. I am finding that tough. The only thing that I did so far to reduce my ALP was to stop drinking and that cut it in half. Hard to believe that it made that big of a difference. I will have more data when I get come blood work in. So far I can only compare two blood tests so I think I should be a bit lower now. Keep me posted on your progress and stay positive.
Andrew
I'm pretty positive. About lowering sugar, if I could accept no sugar in my two coffees, and sugar-free yogurt, I could reduce it further. Products like bran cereal and bread contain sugar. It's hard to bring it down to 6 tsps. per day.
But you have got me wondering if I should try to reduce my sugar for one week before my blood tests to see if it makes any difference. I'm always trying to be my own science experiment. Perhaps that's one way for you to approach it. You could really help us all if you found the next thing to halve your numbers. Since celery is an anti-inflammatory, for instance, we could both eat tons of celery before our next test, and see if the ALP came down. (No adding a Bloody Mary to the celery, though.;))
Hmmm . maybe we could write a book afterward . . .lol. I'm going to go ahead with the documenting my numbers and see what happens. Ceasars would be amazing though!
17.5, huh? You beat me. I just got my cirrhosis diagnosis 2 weeks ago so that makes 15 years after the journey started. I chalk it up to positivity as well. My ALP was 465 on December 8th and 262 on Jan 25th. No idea why. I haven’t changed anything, so I have no idea. And honestly, that angers me. When I pull through this, mark my words, I’m getting an MD/PHD in hepatology.