Question about the Prometheus IBD 7 test

[mrs. vr]

Has anyone had this? My new GI doc. REALLY wants me to have this. The insurance company wont pay for it. We could manage it, but it would be tight. From what I can find online, it looks like this test looks at what the normal tests do, PLUS a few other things, is that correct?

I've already tested positive for the ASCA antibody, but nothing showed on my colonoscopy/endoscopy/cam swallow. I have all the other clinical symptoms, however and my doctors (GI and Rheum.) are convinced I have Crohn's.:confused2:

I would like some input if anyone has it, before we make a big financial outlay. To be totally honest, not that I'm WISHING to have something, but I guess I'm sort of scared that it wont show ANYTHING, and I'll be back to square one again.

Thanks in advance.

 

[Isla]

I do not think it is worth it to pay out of pocket for. No blood test is 100% nor is it all inclusive. Only tests, past medical history / symptom list, and improvement from Crohns treatments can be at all indicative of a disease. One thing alone cannot diagnose it.

Why is he pushing for you to get this? Have you had other tests? What were they and what were the outcomes?

 

[mrs. vr]

Isla, He said that he feels it is much more specific and sensitive and would help get me a more definitive diagnosis. Up until this point, I think I've had every test known to mankind.

I don't fit the "typical" profile, as I really didn't start having CONSISTENT stomach problems (looking back over my history, I have had stuff on/off since I was a kid, but infrequently enough that no one ever tied it together) until much after I developed joint pain, episcleritis, mouth sores, etc. Initially they were testing me for things like RA, and Lupus. The only things that ever came back positive/elevated were my SED rate, and C-Reactive Protein. Clearly SOMETHING was going on, they just weren't sure what.

When I switched to my new Rheumatologist last year, he ran the regular IBD tests, and the ASCA was positive, however, the GI tests did not confirm that diagnosis. So, since there is no definitive diagnoses, he doesn't want to treat me for something I may not have, and he's only trying at this point to treat the symptoms. He sent me to the new GI doc because they've worked closely together in the past to solve these kinds of cases.

I was wondering, can you test positive for an antibody once and then not have it later?

 

[Isla]

Yes, and testing positive for the antibody is only 53% specific if I recall. I too had the pANCA ASCA test done and it came back positive for Crohns though my colonoscopy, pill camera, and biopsies were all negative. My doctor too did not think I had it but put me on Asacol anyway to see how I would do, it is working - thus confirming the diagnosis of Crohns.

Not everyone fits in a cookie-cutter, you may want to remind them of that!

 

[mrs. vr]

Thanks. The pain meds I'm on for the joint pain isn't doing much if anything, I still have terrible flares that last for days, and my hair has been falling out. I think no matter what we decide and what happens with this test, I'm just going to ask them to try SOMETHING to see if it slows things down. The GI doc said the meds I'm on might actually be making things worse, which would make sense with the timeline of symptoms, so I know SOMETHING has to change.

 

[drew_wymore]

I'm the complete opposite of Isla Mrs V. I had the Prometheus panel and it came back negative but my colonoscopy and pill cam does show something. I personally would have not made the financial outlay if my insurance hadn't paid for it.

 

[mrs. vr]

Thanks, Drew, I really appreciate the input. We're really on the fence here.

 

[teeny5]

My prometheus test came back negative but my colonoscopy showed disease...my GI seemed frustrated as he hoped the test would help diagnose too. I wouldn't get it as it isn't that accurate - especially if insurance doesn't pay for it.

 

[drew_wymore]

There are plenty of other cheaper tests they can issue, such as a CBC, SED rates etc that show inflammatory processes. It would be nice if the Prometheus was the magic bullet answer but as has been discussed its not incredibly accurate.

 

[mrs. vr]

I know it's gonna sound like I asked and then didn't listen anyway, but my husband and I talked about it for a long time last night, and he wanted me to go ahead with it. If there is even a teeny possibility it'll get things settled, at this point, it'll be worth it. I went today after I had my abdominal ultrasound. When they bill us, we're going to request they bill us at the insurance rate. Can't hurt to ask. Yesterday I had a blood test for lipase, amalyase, and IgG4. I feel like I pincushion.

Oh, and the radiologist went back over my gall bladder a couple of times, wouldn't that just be the icing on the cake? She also mentioned that I had this done back in 2000 when I had an attack, and they thought it might be gallbladder(it wasn't), so that confirms to me that this has really been going on a long time.

I really DO appreciate all the input, at least I know not to be OVERLY hopeful that this will solve everything.

 

[butt-eze]

I can't blame you for getting this test. You would have always wondered if you could have resolved things faster.

I got the Prometheus test done. Mine was positive for Crohn's. This helped my GI and me decide it was Crohn's over UC. So, it eliminated the potential for colon removal as a cure. I have since had a colonoscopy that confirmed inflammation in my stomach and small intestines.

Have they tried prednisone to see if that reduces your SED rate???

 

[mrs. vr]

I can't blame you for getting this test. You would have always wondered if you could have resolved things faster.

I got the Prometheus test done. Mine was positive for Crohn's. This helped my GI and me decide it was Crohn's over UC. So, it eliminated the potential for colon removal as a cure. I have since had a colonoscopy that confirmed inflammation in my stomach and small intestines.

Have they tried prednisone to see if that reduces your SED rate???

Thanks, that's encouraging to hear.

Yeah, I've done two short bursts of prednisone. They tested me after the first one, it did lower my SED rate, although not significantly, but it was only a ten day course. The bigger thing was, after the third day on pred, I was able to kneel down to get something under the bed...and get back up again! Also, my poop started to resemble poop, as opposed to really gross applesauce. (sorry for that visual, it's the best I can do )

My rheum has planned to put me back on it for a couple months at a low dose if nothing comes up with all this new testing.