ALK PHOS keeps going up

[iagra]

Hi everybody!

I was diagnosed with PBC in 2016. At the time my ALK PHOS was 375. I started on URSO right away. 1000mg a day (500 mg twice a day). ALK PHOS started steadily coming down. A year ago it was down to 116, which was the borderline with the high limit of the range. However, in 6 months after that, ALK PHOS climbed to 138, and in another 6 months, which is right now, it went up even higher, to 188.

I know that ALK PHOS tends to fluctuate in PBC patients. But, what I have doesn't look like fluctuation, more like an UP trend.

My gastro just sent me a not that she will order a fractionalized ALK PHOS blood test and asked for my current weight.

Anyone had a similar experience?

I will appreciate your input.

Thanks

[4pjx__]

I think under 200 is okay. This is what have seen others post. My ALP shot up to 350 last spring and it was really freaking me out but by late October it was 180. I think it can be due to a number of reasons like any new medications or surgeries or even dehydration. I hope your lft's go down soon.

Hugs!

Pam

[iagra in reply to 4pjx__]

Thanks, Pam! I took 7 fluconazole pills a month ago, and plus another antibiotic for the yeast. So, who knows. They labs say that I don't have yeast anymore, but, I still have a problem down there. I'd have to go back and try to figure out further. I'm not using boricaps anymore. How are you? Did you try to go off boricaps? Very glad you ALP is lower now. It's very unpleasant when it goes up, even if there are no new negative symptoms. I'm going tomorrow to do an additional alp blood test. It's breaks it down to parts and looks more closely which part caused it to go up.

Stay well!

I have a news - we are moving to Idaho! Will be closer to you.

[ninjagirlwebb]

I was diagnosed in 2014. Can’t remember what the alk phos was at the time, but urso made it normal. In recent years, it is now above normal. One of my tests last year also went up to 180 something and my hep ordered the fractionalized alk phos test too which resulted within range. The alk phos also went back to <150 for that test. So we are monitoring.

[iagra in reply to ninjagirlwebb]

Thanks very much! I hope my lab will come back like yours.

[ninjagirlwebb in reply to iagra]

It fluctuates so chances are your numbers will too! Try not to worry. But I was anxious too!

[iagra in reply to ninjagirlwebb]

Thank you for encouragement! It helps! 😊

[ninjagirlwebb in reply to iagra]

😊I think your doctor asked you for your current weight because urso is prescribed based on weight. So maybe you need to adjust your dosage. That is another possibility. How often do you do labs?

[iagra in reply to ninjagirlwebb]

I do the lab twice a year and shear wave elastography ultrasound once a year. When it first started, I was doing labs every three months and ultrasound twice a year. My gastro said that she might send me for the ultrasound as well, even though my last one was in august. My weight fluctuates between 122-124 lb most of the time. The doctor says that she can't increase the 1000 mg dosage, because it'd be too much for me. I take it twice a day. But, it is never exactly 12 hours in between. It is more like 8-10 between the morning tab and the evening tab. Not sure if it is I am doing wrong, or it's just it is what it is...

[HermansMom in reply to iagra]

The fractionalized ALP test is to determine where the excess ALP is coming from (liver or bones), so they know what they are dealing with.

[iagra in reply to HermansMom]

Thank you very much for the clarification! I'm doing the blood test tomorrow, so, I'll know the results soon. But, I wonder, what else can they do? URSO is the only medicine.

[ninjagirlwebb in reply to iagra]

No, then on the urso since your weight is steady. You can add ocalvia (spelling is likely wrong) to the meds if needed. This med was approved by FDA for pbc in 2014 or so. I also read that some patients add beno fibrates. Both work to address the pbc in addition to urso.

The fractionalized alk phos measures 3 components where alk phos is found: bone, liver, and gastro (intestines/stomach). It takes your total alk phos and gives you the % for each component. There is a % range noted for each component to flag anomalies. Your alk phos can be high but the % can be normal, so might be kind of hard to pinpoint.

Maybe your doctor will go back to labs every 3 months to see if there is a trend. My alk phos was tested once last Sept when it went high, then it fluctuated lower in early Oct and went up slightly higher mid Oct, then lower in Dec.

If you were a patient of my hepatologist, he will tell you: “Don’t worry. Let’s wait for the test results and we can make an informed, scientific decision to address it.” He is very calming.

Good luck on the test. You might have to wait a bit longer on these labs as they are more specialized. Regular labs are resulted in a day. These take a couple more days, but I don't think more than a week depending on the lab.

[iagra in reply to ninjagirlwebb]

Thanks very much!🍁

[freebyrd1707 in reply to ninjagirlwebb]

Oh how I wish my dr was kind. He’s rude and terrifying. No bedside manner and not reassuring at all.

[ninjagirlwebb in reply to freebyrd1707]

Sorry to hear that. Can you find another doctor who has a better disposition. It is challenging enough to have this condition, don’t need a mean doctor to add to the stress.

Stay well!

[freebyrd1707 in reply to ninjagirlwebb]

I would like to seek another opinion. For the dr not the diagnosis. I know I have it. Thank you!!

[ninjagirlwebb in reply to freebyrd1707]

Yes...find a doctor you trust and can talk to as an equal. I told my doctor that is what I like about him, he is down to earth and answers my questions without the “know it all” attitude and not too much technical jargon. When he doesn't know, he tells me.

[iagra in reply to ninjagirlwebb]

My fractional result showed that the intestinal portion of ALP is elevated, not liver or bone. I don't know what it means. We are in the middle of the move to another state and I had no time to further consult with my gastro. I'll repeat the test in a couple of months and see the new doctor. Thanks for your info!

[ninjagirlwebb in reply to iagra]

That means it is not the pbc causing the alk phos issue because it is not the liver contributing to the higher alk phos level. So likely your pbc is controlled. But not sure how one would interpret the intestinal alk phos. Best to ask your GI doctor or hepatologist.

[iagra in reply to ninjagirlwebb]

I will. Thanks!

[JaneEyre55]

Talk to your doctor about putting you on Ocaliva

[iagra in reply to JaneEyre55]

Thank you!

[rderezin]

I have had pbc for 29 years and my numbers go all over the place..often takes a few years to stabilize the eighg dose which I'd why you have quarterly bloodwork to track your results over time...drug company recommends dosage based on weight but your dr is probably trying to fine the right amount for your liver...sine they know you will be on drug forever...I would actually be thrilled with your numbers...have you doctor explain all the liver blood test numbers to you ...it will help you understand things about your individual liver. We are soooo lucky to have a drug.

[iagra in reply to rderezin]

Thank you very much! I really appreciate your input. Best to you.

[OdinsMom]

Not that I've had it done because I was unable to take urso but I get where it should be done before thinking that urso isn't working. ALK PHOS can come from many different places and if you were stable for so long and then it starts going up I'd want one done. It does tend to start going up after menopause it will start going up as well.

[iagra in reply to OdinsMom]

Thanks very much! 🍁

[OdinsMom]

Sounds like a smart GI. Most don’t bother to get the breakdown to see if it’s coming from somewhere else. Sometime urso May stop working it less effectively for some. They can add ocaliva or a fibrate to help

[iagra in reply to OdinsMom]

Thank you!

[ManhattanNY]

I have my enzymes tested monthly. My liver doctor is a stick-in-the-mud and I detest him because he's so pessimistic. (I wonder if we have the same doc?!) Anyway, once, Quest made a mistake and because of it, I had my enzymes tested twice within 5 mins. There was a 15-point diff on Alk Phos. 5 minutes! So yes, it does vary for apparently no good reason. (The latter test was lower, in case you were wondering). But, my levels were steadily increasing and so I quit doing what my doctor told me and went to my primary care doctor who is encouraging instead of a sack of potatoes like my hepatologist.. She and I have been doing experiments with different things and my levels are way normal now. One thing I did was switched Urso for the taurine conjugate of it, which is Tudca. I stayed on the same dosage.

[iagra in reply to ManhattanNY]

Thanks very much for your input! How is Taurine Conjugate of Urso prescribed? What is the full name of this RX medicine? Thanks!

[ManhattanNY]

There's no prescription, just Amazon. I take the same dosage I did of Urso. I get the Nutricost brand of it. The research shows that over the long term, it helps more. I got both short-term and long-term benefits from it, though it does cost me more than Urso with my insurance.

[iagra in reply to ManhattanNY]

I found this on amazon. Is this what you take? Nutricost Taurine 1000mg, 400 Capsules amazon.com/dp/B01CUYHCX6/re...

[ManhattanNY]

No. This is it: amazon.com/Nutricost-Tudca-...

If you only need 500mg, there is a different bottle for that size. I take 750 total, 2 at lunch one at dinner so I get this one of 250 mg.

[iagra in reply to ManhattanNY]

Thanks! It's weird, the 1000 mg is a lot cheaper than 250 mg, same brand. I wonder why it is.

[ManhattanNY in reply to iagra]

I don't know, maybe because very few people would take that much? I dunno.