Fluctuating ALP, AMA and ANA tests

[TanGram]

Hi Friends, I had my 3 month blood work done. ALP went down, then back up. I'm at 171 now, previously, (three months ago),161....also, my AMA and ANA are negative now? Has anyone had that happen? I know ALP can fluctuate, but AMA and ANA? Both negative, when both were positive 3 years ago. I'm in the process of transferring to The Mayo Clinic in Scottsdale AZ.

I'll hear from my Dr. next week. Just anxious.

ALT good

AST good

Smooth muscle AB still positive

Thanks for any ideas or info you've heard or done =)

[DonnaBoll Administrator]

I can understand how frustrating that is. First of all, glad you are getting to be seen at Mayo. To my knowledge, there is no reason to keep repeating the ANA and AMA. If it was + initially, then it's +. We all have fluctuations in our liver enzymes, What's important to is to look at the overall trend after you've had them drawn multiple times. I assume you are on Urso. Please make sure you are on the right dose. It is prescribed 13-15mg/kg of body weight. Dosage is never based on lab results or symptoms. There is so much to take it at first. I strongly recommend you purchase Dr. Jones' book The Definitive Guide for Patients Who Have Primary Biliary Cholangitis. It is invaluable! Lab work is recommended to be done every 3-6 months. Please let me know how it's going..... If you're not sure if you are on the right dose, please feel free to send my a 'chat' and I will gladly help you with that.

[TanGram in reply to DonnaBoll]

Thank-you DonnaBoll. I enjoy reading your input. Very helpful. As of now, Mayo Dr. is keeping my dose the same as my Seattle Dr. 250x4 a day. I weigh about 148lbs. Mayo is doing another ultrasound and fibroscan in January. They are having my liver biopsy from Seattle Dr. in 2021 re read by thier team, and making sure I don't have AIH, or overlap. Mayo Dr. messaged me this morning with all of this info, but no mention of why my AMA and ANA are negative. Might be irrelevant. But she did suggest I get a Hepatitis B vaccine done. I'm so impressed with the Mayo Cinic. Very thorough, attentive and comforting. I'll keep everything updated and posted, should any like to know, or can relate. =)

[DonnaBoll Administrator in reply to TanGram]

Looks like you are on the right Urso dose - that's really important. I couldn't agree more that Mayo is taking good care of you. Please keep me posted on how you are doing.