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Prometheus IBD Bloodtests-Anyone have this done?

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Ulcerative Colitis
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Posted 5/8/2012 12:07 AM (GMT 0)
My new GI doc is having me get this bloodtest done. I've had those pANCA ones done last year and they were negative. He said he's trying to get some more info for diagnostic purposes that will be less invasive. I've been on the rectal meds for a bit now so he feels that if he does a flex. sig. the medication I'm on might mask things and the scope would be useless.

I thought I read somewhere that these genetic screenings aren't 100%. Can someone give me more info about this test? Have any of you had it and do your results corroborate your diagnosis?
Posted 5/8/2012 1:11 AM (GMT 0)
They are not very accurate, many GIs don't even bother with them. I think my GI would have me get the test only if I were opting for surgery but even in that case, I don't think the result provides too much accuracy and they tend to be expensive.
Posted 5/8/2012 1:14 AM (GMT 0)
I have had the test done and I think it is pretty accurate, your doctor just needs to know its proper place and use the results along with the s-scope results and your history. It can be a piece of the whole picture.

I had what looked like a definitive case of UC: severe inflammation at the rectum up 25 cm. My Prometheus came back Crohn's. Now I have had four total colonoscopies and one found two very small ulcers in my ileum.

I may be wrong on some of these-my papers are in my office at work. I am pANCA positive, unlike you. Being pANCA + points towards UC. ASCA + points towards Crohn's. I was negative on ASCA. The anti-OmpC positive points towards an aggressive form of Crohn's for which I was negative, but I was positive for anti-Cbir1 which also points towards Crohn's.

There are two different pANCA measurements. One has a reference values of 28 or so and the higher you are above that, the more your pattern corresponds to UC. The other is just some value that is either detected or not detected. A detection points towards UC. The ASCA reference values are two different numbers, with the + pointing towards Crohn's as I mentioned.

I hope this wasn't too confusing!
Posted 5/8/2012 1:40 AM (GMT 0)
My daughter's GI had us do the test "just in case" but was clear that it's only "a part of the puzzle" and is far from 100%. My daughter had the genetic screen part too (this is new) as well as the antibody test. Her GI is a renowned researcher whose area of expertise is IBD and genetics. She had one genetic marker for CD and everything else was UC. Her GI said that the particular marker was actually very common in the general population (and therefore in those with UC as well) and so she was not worried about it at all. She was happy that all of the antibodies were negative for CD (though this can be wrong). So, no, it's not accurate. If you get it done, have your GI review it carefully with you so you don't panic. I was lucky to have our GI do that for us.
Posted 5/8/2012 2:03 AM (GMT 0)
KC which one did she has + for CD? I had anti-Cbir1 and it turned out correct.
Posted 5/8/2012 2:06 AM (GMT 0)
Levi, it wasn't that - it was A16 something something I think? It started with A. Her GI said that promethius incorrectly called it a mutation and that it was much more common than that (a mutation is pretty rare I think). I think she called it a polymorphism but that could be wrong? She really brushed that one aside and I've interrogated her on it. Did your GI explain anti cbir1 to you at all? I'm sorry you had your dx changed but I hope you're in remission.
Posted 5/8/2012 11:27 AM (GMT 0)
KC- He did explain it to me and I researched it some but I can't really remember much of it, I just remember it is associated with fibrostenosis, which I haven't yet had any problems with.

The test has become much more accurate over the years as they have added new markers. The anti-Cbir1 had just been added when I had the test done, so had I done it a few months earlier it would have shown UC which would have turned out to be incorrect. Years ago, yes it was inaccurate, it was like telling a sketch artist the criminal had blond hair, green eyes, and was six feet tall please draw a picture. It is a much better test now, and probably has more values than when I had it done in 2009.
Posted 5/8/2012 11:51 AM (GMT 0)
Hi Levi,
I'm not sure about exactly how accurate this new test is - it's the only one we've ever done. Our GI wanted us to do it as she wants to have a clear dx for my daughter in the case that surgery is necessary. My daughter presents (so far and knock on wood) as classic UC but that changes to cd more often in children than in adults. When she had us do the test she was clear that it's not the most accurate test but she wanted it regardless.
Were all of your serology markers indicating UC?
As for the genetic component, I really don't know anything about them other than the one my daughter was tested positive for. Even then, I only know very little since it's way over my head. My husband researched it and then we discussed it several times with our GI. She was pretty clear about the fact that this particular marker was not a reason for change in dx or concern because it was common and promethius had incorrectly classified it. Since that's what she does, we just go by that...
Chrissy72, I don't know how comfortable you are reading the research on this test, there's quite a bit written on it on pubmed. I personally found most of it too difficult to understand.
Posted 5/8/2012 12:30 PM (GMT 0)

i had it done a few years ago.  They thought i had crohns for the past 15 years(my uc is in patches more consistant with crohns but classic uc symptoms).  test showed UC, so they switched my dx.  no change in meds was needed though. 

make sure your insurance covers this test, mine did not, i didnt find out tillafterwards and it ended up costing my $400.  this test was not worth $400 to me. 

Posted 5/8/2012 12:31 PM (GMT 0)
Hey KC,

I think your daughter must have had a more extensive test done than me, I didn't have any value A16 (or anything close to that) measured. I just had the Serology 7 test done. But to answer your question, six of my markers were + for UC: ASCA IgA, ASCA IgG, anti-OmpC, and three pANCA measurements. The Cbir-1 antibody was the only one that tested positive for Crohns. There is a note beside the anti-Cbir 1 measurement that says it helps differentiate between UC and UC like Crohns in patients that test positive for UC in other categories. So it was pretty accurate in determining my diagnosis.

There is a lot of good information on pubmed, but I'm like you most of it is too technical for my understanding and it's hard to wade through to what I can understand.
Posted 5/8/2012 12:39 PM (GMT 0)
Oh, sorry I misunderstood Levi. The newest Serology 7 test has the antibody component (all negative for my daughter) and a genetic component consisting of four genes (A16 ??? positive for my daughter). I was talking about the genetic component of the new test. I hadn't realized that the serology section was more extensive and accurate too.
Chrissy, I assume you'll be having the same test as my daughter did - it's the newest one on the market?
Posted 5/8/2012 12:42 PM (GMT 0)
I've been to three different GI's in my time with UC. Two were terrific, the other not so much. At any rate, all three agreed that the Prometheus wasn't reliable enough to make it worthwhile. Perhaps they've improved it in the past couple of years, though.
Posted 5/8/2012 2:05 PM (GMT 0)
We too had the serology 7 test and not only was it inconclusive, my GI did not put much weight into it. We pushed for the test hoping for some answers, but to no avail. In this case, the GI was right.

Post Edited (trojen) : 5/8/2012 10:19:09 AM (GMT-6)

Posted 5/8/2012 2:31 PM (GMT 0)
Yes, I'm having the new test done. It's supposed to be more reliable than the previous tests but the doctor did caution me that its not 100%. We're using as piece to the puzzle. I was really thinking I need another scan. My first and only colonoscopy was done last year. However, the new GI said that even if we did a flex.sig, it wouldn't be that reliable since I've been on the rectal meds for a while.

Although genetic testing in any capacity has its limitations, I think eventually that's where the medical field as far as diagnostics is going.
Posted 5/8/2012 2:41 PM (GMT 0)
Can you not do an MRI or MRE? I think that might be as if not more useful than the Prometheus?
Posted 5/8/2012 3:51 PM (GMT 0)
I only have proctitis with no pain and no cramping. I'm not sure what those tests will do for me?
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