Continued nausea

[Pamela4475]

I can’t find past posts but lately my alp went up by 50 points and I’m nauseated all the time.... part of pbc?

[gwillistexas]

Hi Pam. I wouldn’t know. When do you see Dr Mantry?

[Pamela4475 in reply to gwillistexas]

December 20.... he is thinking bc it did not show up on my biopsy that I don’t have pbc.... trying to stay calm but I have positive Ama2 and elevated enzymes and I responded to urso for 2 years so far.... but they put me back on a statin bc like with all pbcers my cholesterol numbers went up. Wanted me to stop urso and I said no until I get my fibroscan.... plus the itching.... but I will listen to what he says. He is repeating my ama2 so will see..... does that ever go negative one positive?

[gwillistexas in reply to Pamela4475]

Hmmm...I guess I’m a little surprised at him relying on biopsy considering he is with the big liver institute. Seems you have all the indicators just as I did. I’ve not had a repeat AMA. Since that is the antibodies, I’m not knowledgeable enough to know if they can turn negative but I wouldn’t think so. I found out something else from Mubarak. I asked why I had not had a repeat ultrasound since I was diagnosed. He said the guidelines at the liver institute is that once you show cirrhosis they start doing them to look for cancer because it is more likely at that stage. Otherwise, no ultrasound unless valid medical reasons.

[Pamela4475 in reply to gwillistexas]

Is murbarak in the mantry group?

[gwillistexas in reply to Pamela4475]

Yes. But he did open his own private practice. Is still involved with liver institute.

[ninjagirlwebb in reply to gwillistexas]

Thanks for the explanation on ultrasound. My hepatologist said, I didn’t need one when I asked him.

He did do a fibroscan since I asked about that too. He also said he didn’t think I needed a fibroscan either.

But he said, let’s just do one anyway since the machine is right in this room. It will put your mind at ease. We’ll look at it together after the nurse is finished.

[gwillistexas in reply to ninjagirlwebb]

You’re welcome. I just thought periodic ultrasounds were part of our care. I asked him “but don’t you want to see what my liver texture is?,lol”. 😀

[ninjagirlwebb in reply to gwillistexas]

I did 2 ultrasounds in the past 5 years. I thought may be it was every few years.

[gwillistexas in reply to Pamela4475]

I hope you and I have got the right drs, lol! So far I trust Dr Mubarak more.

[Pamela4475 in reply to gwillistexas]

If he is in the group I may have to see him too 😊 but he’s at Scott and white?

[gwillistexas in reply to Pamela4475]

No, I just looked it up. He’s st Methodist medical center. Hmmm. I’ll have to inquire as to why he’s not affiliated with liver institute.

[gwillistexas in reply to Pamela4475]

His office is in Plano

[gwillistexas in reply to Pamela4475]

He very well may have pullout of Mantry’s group.

[gwillistexas]

You know ALP can be from bones? Mine has also gone up the last 2 labs. That and another lab are off. Dr Mubarak said I may end up having bone marrow biopsy to see if it’s from my bones. I sure hope you can feel better 😊

[Pamela4475 in reply to gwillistexas]

I wouldn’t want that either but my bones seem to hurt a lot... which arthritis also gets worse with pbc... they think it’s autoimmune too

[gwillistexas in reply to Pamela4475]

I believe RA is. That was included in my long lists of labs when diagnosed, along with all the other, Sjögrens, lupus, etc.

[Pamela4475 in reply to gwillistexas]

Me too

[anoush in reply to gwillistexas]

There is a blood test that can show why your ALP is elevated. It's called alkaline phosphate isoenzymes. It can tell whether it's from your bones or liver. Before I was diagnosed my primary ran this test because my ALP was constantly up. It showed it was coming from my liver

[lilygrower]

Hi ,

I was diagnosed a year ago and did fine on Urso except for nausea. I've had some lactose intolerance issues in past. I figured out by trial and error that nausea is greatly reduced if I stay off dairy. Totally. If I eat a little bit, it's usually okay or mild. However, some days I have random nausea but much less often than before.

I hope this is helpful.

Jill

[Pamela4475 in reply to lilygrower]

Ty

[lilygrower]

Nausea is just so hard. It's kind of debilitating even when everything else is going pretty well. Saps your energy. I hope you find a good solution that works for you!

[Pamela4475 in reply to lilygrower]

Ty lilygrower......btw I wish I could grow lilies 😊

[lilygrower]

They are actually pretty easy. I love mine because most come from the gardens of precious family members, like my mother, grandmothers, and sister--who were all some of the best gardeners ever known! I call them my family heirloom lilies and they give me good energy!

[Pamela4475 in reply to lilygrower]

Beautiful