Well, it's been almost 1 year since I was diagnosed with PBC. I couldn't tolerate URSO at first, so I actually didn't get started on it until February of this year. I've had labs done pretty regularly (approx every 3 weeks) at first because they were watching my LFT's, but then my 2nd AI reared its ugly head (RA) and I was put on Sulfasalazine for that. So, they monitored my LFT's while I got started on this other drug. I guess no one seems concerned about anything which is good. My dry eyes, muscle aches, and low grade fever persist... I notice them more at night.
My Alk-phos and AMA M2 are the "only" LFT's elevated all this past year. My Alk-phos fluctuates between 142 and 175. I'm wondering.... Should URSO have brought that Alk-phos number lower by now?? I've blown my diet ALOT in the last few months. Could this have an effect on my Alk-phos not going any lower? My hepatologist doesn't seem concerned and I NEVER speak to him. Our relationship is through his nurse. Lol
Anyway, I guess I'm not sure what I should be looking for while on URSO. Should I be expecting my Alk-phos to get into that ever elusive normal range at some point?? What's been your experience? Oh... I almost forgot,... I just had an ultrasound... I'm supposed to get one every 6 months. This was my first.... It came back unremarkable but, I was told ultrasounds aren't as good as fibroscans at detecting fibrosis. Problem is, my GI doesn't have one... only ultrasound equipment. Might they miss seeing something???
Thanks,
I love the way that one little sunflower has its head turned upward. Sort of saying... "keep your chin up"
Stella ❤
DX PBC 10/16
DX RA 4/17
DX DeQuervain's tendonitis 7/17
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Ktltel
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My other LFT's are in normal range. Only alk-phos and AMA M2 are out of range, high. And yes my Alk-phos has been elevated for at least 9 years. No one ever checked the AMA-M2 back then. But, I had surgery back in 2008 and it was high back then. Doctor didn't catch it. My hepatologist thinks I've had PBC for a while. Scary to me.
I just wondered if the URSO should be lowering my Alk-phos. Because it hasn't. And yes, I had a liver biopsy back in early March this year. All it showed was mild fatty liver.
You should be fine then.. if your alp keep going up and up then u might rethink about new med I guess other wise you should be fine..
All my lab works are normal but my alp always fluctuate around 90 to 115 which is high normal and my pbc is progressing in a slow pace then it was before !
(Aug 1, 2017 - The normal range of ALP varies from person to person and depends on your age, blood type, gender, and whether you're pregnant. According to the University of California San Francisco (UCSF), the normal range for serum ALP level is 20–140 IU/L, but this can vary from laboratory to laboratory.)
So if yours fluctuates between 90-115, isn't that still in normal range??
Ultrasound are used mostly of cancer or tumor detection. Fibroscan checks the fibrosis tho it can't be 100 precise but gives some idea about your live to the docs!
Did you join the PBC Foundation? If so, did you download the new compendium? The 2017 version. There is an explanation in there that I think will be useful to you.
The part that stands out to me is:-
"ALP (iu/L: 40-130 adult males and 35-105 females)
ALP is short for Alkaline Phosphatase or Alk Phos. ALP is an enzyme made in the
liver and also in bones, placenta, kidney, and intestine. It can be raised in liver
disease, e.g. in cholestasis, but also in some bone diseases and other conditions.
Most people with PBC have elevated ALP. For all ALP can be raised in other
In my experience the lowest my ALK Phos was at 191, but they went back up to over 200 again within two weeks. It's normal for our numbers to fluctuate & yes, what we eat may effect the numbers also.
About the fibroscan, can your GI refer you to someone who can do the scan? I would insist on a fibroscan just to make sure the ultrasound didn't miss anything. It's your body, so you DO have the say in what tests you want ran.
George Mell said to me and I know all opinions are different, a person without PBC will have 100 or under and for a PBC patient (could just because my level was 1056) he would be happy to see mine at 200.
Regarding the fibroscan it picks up the stiffness, so an ultrasound would not detect that.
I am booked for a second ultrasound despite having the fibro in May, so it obviously does have its place for consultants still.
Wher I had it done it was brand new and my hepatologist then said its a horrific price, I am sure she said several thousands maybe 50. I was too busy hoping the result would be good hehe.
A general ultrasound is likely to lack detail for PBC-related information unless perhaps some significant changes have taken place. There is however a special type of ultrasound used in some hepatology units called 'shear wave elastography', which is effective in assessing the liver's 'stiffness'.
Fibroscans are more established and more commonly used than shear wave, but because of the way they work, in some people and in some circumstances the information they provide is less reliable - so I've been told. I've had both types of imaging done in the same appointment and been told to rely more on the shear wave when there was disparity between the two.
If you've only had a general ultrasound, I'd suggest you try to source either shear wave or fibroscan if you feel you want more information.
It most definitely sounds like a Fibroscan is the way to go instead of relying on the results of an ultrasound which aren't nearly as detailed for our disease (PBC) as I thought.
Just got mine scheduled for December. I'll have to see the doctor afterwards and he's booked until January so they squeezed me in.
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Itching with clear ultrasound and bloodwork
Fibroscan shows slight fatty liver
Fibroscan Results with PBC
