liver enzymes elevated after Urso brand change.

[USmember]

I have had PBC since 2004 with stable liver enzymes until approximately one year ago. I realize it may be disease progression but am wondering because I had an insurance company change just before their elevation and my new insurance company switched me to a different generic brand of ursodiol. Does anyone have any thoughts on whether this as a possible cause/contributor? And ironically the other change at the time was that I stopped drinking…oh and I also started on Calcium supplements at the same time. Thoughts?

[butterflyEi]

Hi USmember

I think there are a lot of variables all at the same time to be sure what is the factor that has caused this change. A couple of questions to throw into the mix. Are you on the right dose of URSO, the patient information leaflet will give you guidance and the PBC Foundation have a chart on their web page? Is your specialist aware of the change and are they able to offer a second line therapy if needed? Was there a particular reason for the calcium tablets? There is a good article from the MayoClinic on Calcium, here is the link

mayoclinic.org/healthy-life...

[USmember in reply to butterflyEi]

Thank you. I have all of that covered. I have been diagnosed with osteopenia and both my primary care doc and my hepatologist want me to take calcium supplements as people diagnosed with PBC are prone to bone loss.

Oddly enough, I read in one National Institute of Health (NIH - I am in the US) that implied that calcium supplementation can harden bile ducts. I have searched for more info on this and can’t find any - my hepatologist has not heard of this either. (There are about 14,000 articles on the NIH website about PBC - I am NOT reading them all - lol)

I have recently started seeing a naturopath who is also an MD and she is working on it.

So many nuances!

[Oidra]

In 2000 I started taking Urso and had problems with swelling and feeling unwell. I was changed to Ursofalk which I have taken since without issue. A couple of times during this period when I have changed chemist they have given me the generic brand urso and I have had to be rather difficult to get back my Ursofalk. One practitioner suggested that I had the generic until I was ill and then they would change it!

I am mentioning this as you have just changed to a different genetic urso so just bear it in mind while you are pondering.

[USmember in reply to Oidra]

Thanks - I am a little confused by your answer. Are you saying that you had symptoms again after switching brands?

I am seeing my doctor again next month and will see if she can convince my insurance company to pay for a trial of the brand name provided in the US. If they don’t agree, thankfully I live on our southern border and will purchase it in Mexico for less money and test it for myself.

[Oidra in reply to USmember]

No I am saying that once I changed to Urso and got on well with it I wouldn`t accept any other. If you have a brand you got on well with , make sure you are given it each time, if you can.

[USmember in reply to Oidra]

Got it. I agree that is what I should do too. Thanks for sharing and wish me luck!

[DonnaBoll Administrator]

As far as I know, as long as you are taking Urso - AND are on the right dose, the manufacturer can change but it's the 'fillers' they use that makes one different from another. Sounds like you have tolerated different manufacturers. Other factors that can elevate enzymes are stress and any type of illness or infection. We all have fluctuations in our numbers. Was there a significant elevation in your results? The dose is 13-15 mgs/kg of body weight.

[USmember in reply to DonnaBoll]

Thanks. I am on 1200 mg of Urso and weigh 57 kg. This is a high dose but when my new hepatologist decreased my dose to 900 mg my Alk Phos numbers rose so she put me back on the higher dose

I keep track of my health pretty closely and have nothing else going on as far as stress, infections, etc. my AST and ALT are about double the normal levels and have remained there.

Still trying to figure it out.

[DonnaBoll Administrator in reply to USmember]

If you go by 13-15mgs/kg then your dose should be between 741-855mgs. I'm glad she decreased the dose, the 1200 mgs being way too much. Since you said your numbers are still double what they should be, how long have you taken Urso? Where did your alk phos numbers start at? What are they running now? It can take up to a year for Urso to bring numbers down - many never get to the 'normal' range but are greatly improved from where they started. The Urso dose is always based on body weight - never symptoms or lab results.

[USmember in reply to DonnaBoll]

She put me back in the higher dose because my Alk Phos rose after she tried lowering my dose to 900 mg/day. When she put me back on the 1200 mg/day my Alk Phos came down but it never quite returned to normal. My liver enzymes were all within normal limits ever since my diagnosis in 2004 - until she made that decrease.

I didn’t realize it could take a year for liver enzymes to respond! I recall from 2004 my (slightly elevated) enzymes normalized within about two months of starting Urso. They remained normal until the Urso decrease, leading to the Alk Phos increase then all elevated suddenly after I made theee. Ganges in my life: I had an Urso brand change, I started calcium supplements, and completely stopped drinking ( I wasn’t drinking much - just a 1/2 glass if wine most days). I am plant based, no processed foods, exercise regularly for most of my adult life.

So that led me to question that change…