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elevated liver enzymes

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Ulcerative Colitis
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Posted 8/10/2013 4:33 PM (GMT 0)
Apparently, the URSO for PSC "treatment", while being the best at the time, doesn't seem to have any effect in the long-run. It is a positive "treatment" for PBC, which I'm more in that category.

I'm happy to hear about the continued MRCP testing.

I hope they're not planning on doing biopsies or ercp.

I opt to stay on the URSO...reason is that my liver enzymes are in the normal range...regardless of what my diagnosis is.

If he does have AIH...I would assume that would be the main concern for treatment.

Get all the copies of the blood results and the MRCP. Just fyi..you can get a copy CD of the MRCP as well..I have both of mine. VERY COOL to have and see the actual goings on in there..

q
Posted 8/28/2013 9:09 PM (GMT 0)
During our most recent visit to Mayo Clinic, to have my son's PSC diagnosis confirmed, we were told that if the URSO brings the enzymes down, then they urge the patient to stay on it. At last years PSC conference, there were several doctors who stated that the better outcomes are noted in PSCer's whose ALP levels stay within 1.5 times the upper limit of normal. They are now thinking that PSC may have several sub-groups and if you are a "responder" to Urso, then you may have a better prognosis. Sometimes I don't know what to think, but we continue to do Urso and hope for the best.
Posted 8/28/2013 9:52 PM (GMT 0)
I didnt read the whole thread but just wanted to add that high alts need to be tested for hep c. Jic!
Posted 8/28/2013 10:10 PM (GMT 0)
My son was at the largest liver centre we have here in Ontario. The hep dr said she would not prescribe URSO herself but because he was already on it he should reduce it by her calculations according to his weight or go off it altogether. She is also reviewing all his tests to confirm diagnosis. She also said other hep drs continue to use URSO for PSC in small doses. There were many research trials as well that we will be informed of once the diagnoses is confirmed. I guess the good news is they are learning all the time and the bad news is it gets muddy with meds like URSO. Cheers to good health. I will update with the research once we learn more.
Posted 8/28/2013 10:23 PM (GMT 0)
She also wants him on 2000iu of vitamin D to help prevent bone loss along with 3 servings of dairy daily that would provide calcium intake.
Posted 10/20/2013 9:57 PM (GMT 0)
Quincy....Have you heard of LUM 001 from Lumera Pharmaceuticals? It is for treatment of rare liver diseases icluding PBC and PSC. They are currently doing a Pahse II study to evaluate LUM001 in combination with UDCA in patients with PBC.
Posted 10/21/2013 4:25 PM (GMT 0)
No, haven't heard of it. Looks very interesting. I'll do more research on it and keep it for future reference, suggestions, etc.

Thanks for the info!

What's your take on it?

q
Posted 10/22/2013 2:36 PM (GMT 0)
Seems promising but I thought VANCO was as well. I mentioned VANCO to both of the Liver specialist my son sees and both just brushed it off. I will mention LUM001 to his current liver doctor. I would be interested in what your Dr. says about it. My thought is Doctors probably wait until the trials are completed before they even research new treatments.
Posted 10/22/2013 4:59 PM (GMT 0)
I haven't talked with my doctor regarding my liver. I think since I'm doing fine, no symptoms, bloodwork is good, MRCP results haven't changed, etc, there's no need to revisit it. I don't have a liver specialist.

Did you request your son try the vanco?

q
Posted 10/23/2013 4:07 PM (GMT 0)
Since the MRCP was not definite, "findings can be related to PSC", both liver specialist treatment is to do bloodwork every 6 months and a yearly MRCP. At this time they are not recommending medication. We have a new GI from the same hospital as the Liver MD who is treating the IBD. Our first appointment is Monday. Our local GI has him on Lialda plus he just finished prednisone a few weeks ago.

A month into the prednisone his ALK Phos was 151 from 424, AST 21 from 81 and ALT 65 from 153.

Liver MD said that was normal though I did not read where prednisone could lower liver enzemes.

Also his IgG4 levels were normal.

I plan on mentioning LUM001 when I speak with the Liver MD.

I hope you levels and bile ducts stay unchanged. Good luck

Posted 10/24/2013 6:40 PM (GMT 0)
I've never read that pred lower/helps psc, and if his enzymes were increased, I think he should have been put on URSO to see if they lowered possibly.

I can see that he have an MRCP at one year....but if all is unchanged, he could have another in a few years.

For sure, the enzyme testing should continue twice a year.


I should clarify regarding a liver specialist...I saw one initially...when I refused the ERCP, he agreed. I was put on URSO, and since my enzymes went down almost immediately, I've stayed on it.

As well, since I weigh in more with PBC than PSC, I remain on it for that reason. My GI did mention that URSO wasn't a med proven to help PSC (but I still think having better bile flow and lowered LFTs, it's a good thing), I have chosen to stay on it.

When's the apt with the liver specialist?

I have to check if I've had igG4 tested.

q
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