Wednesday's Word

[DonnaBoll]

Urso responder........

Right now the criteria used is that the patients' alkaline phosphatase result is LESS than 1.67 times the upper limits of normal and the bilirubin results are less than one time the upper limits of normal.

I know this can be very confusing. This is why it is so important to all of us to look at the overall trend of our results - not one blood draw's numbers.

It can often take up to a year to see if someone is a 'responder' or not. Often making this decision isn't as clear cut unfortunately. Not too much about PBC seems to be simple.....

In Dr. Jones' book the target value for alk phos in 2023 is a number less than 217. In the future they hope to bring that down to under 130.

[ortam]

Im always in the 150 range, very frustrating for me!

[DonnaBoll Administrator]

I know It can seem frustrating when your alk phos isn't the 'normal' range according to your lab's values. But you also have to look at where your alk phos started. For some if they started in the 200-300 or more, then 150 would be a huge improvement. We all need to remember to look at the overall trend of our results - not one lab draw. Many hepatologist (at least here In the US) are often happy with a value less than 200. I wouldn't think 150 is a bad number at all. How long have you been on it? Where did your numbers start at? Are you on the right dose of Urso? The correct Urso dosage is one of the most important pieces of treatment. At least half of patients on Urso are not on the right dose - probably even more than that. Dosage is ONLY based on body weight. Never on lab results or symptoms. I hope you can find some comfort in being 150 when you look at the whole picture since starting Urso. I would be glad to chat more about this with you.

[ortam in reply to DonnaBoll]

I started in mid 200. I have an excellent hepatologist from Mount Sinai Liver institute in NYC. My weight is 145 and taking 1250 mg. I don’t qualify for ocaliva and he feels my cholesterol low enough so doesn’t want me on fibrates. He said let’s wait and see when the new prescriptions come out this fall. I also have Eosphinis esophigitis, he mentioned he has seen that cause higher Alp, so that could be contributing to higher numbers.

[DonnaBoll Administrator in reply to ortam]

Sounds like you are being well taken care of. The Urso dose is 'right on'. New drugs are so close to being on the market this year. Seladelpar is very promising.

[Chippy45]

My alk phos is under 200...yay me.Was diagnosed in 2013...alk phos was almost 500 on Urso alone...then Fenofibrate 48 mg added.

I go to Mass General, Boston, MA.

[DonnaBoll Administrator in reply to Chippy45]

Great news for sure!!! Yeah for you! So glad you are an 'Urso responder'. I know members from another support group that go there too. I can't think of his name right now. I was fortunate to meet him at a conference nearby about 5 years ago. Lovely man!

[Chippy45 in reply to DonnaBoll]

Donna...Dr Dan Pratt is THE best !!!The Fenofibrate worked for me...

Back in 6 months for fibroscan.

[DonnaBoll Administrator in reply to Chippy45]

That's him! lovely man...... so kind and caring.

[Chippy45 in reply to DonnaBoll]

I am glad I have him for my care...The best.I told him he better never retire.

[TanGram]

This makes me feel a little better reading your post Donna. My ALP has been in the normal range for the last two to three years, then it went up to 158, we retested three weeks later and it had gone up to 188. All other tests were normal...except my vitamin D and Vitamin B12. I did some Dr. Googleing, and low D and B can cause ALP to rise...anyone else experience this? Or anything like it? Om hoping this is the reason. I'll hear from my Dr. this week.Thank-you

TanGram

[DonnaBoll Administrator in reply to TanGram]

I have no doubt that you aren't the only one who feels this way when we see an increase in our numbers. I think we all want to be 'normal' in every way we can. This just shows how important it is to look at the trend of all of your results. I feel that Dr. Jones' book is such a great source of information. Hope you have it. It can often make us feel what we are experiencing is ok. I have taken Vit D and E supplements in the past for lower levels. So are you taking those vitamins now? Vitamin levels are important to maintain. If you do make sure you are taking the dose your doctor wants you to take - not just a bottle from over the counter. Thanks for your reply.

[TanGram]

I just started taking D, B12 and omega 3s, after I saw my test results. Dr. recommended doses. I'll post what my Hep.Dr. Recommends After I see her. =)

[DonnaBoll Administrator in reply to TanGram]

Great! often the 'over the counter' doses aren't the right amount. Let us know.