Prometheus?

[Kathy1109]

Hello! I had posted awhile ago regarding my husband. He has severe iron deficiency anemia which led us down the road to investigate Crohns. Colonoscopy just showed some slight irritation in the ileum. However, EGD showed many small ulcerations which were bleeding in the first and second part of the duodenum. All biopsies and bloods have been negative (except low hgb, hct, and ferritin of 7). He was started on Omeprazole. Repeat EGD was this AM and initially areas had healed but while the doctor was watching, areas started bleeding and ulcerating right before his eyes. He said he has never seen this and called another doctor in who hadn't either. He said the tissue was extremely friable. He ordered a Prometheus test for IBD since everything else has been normal. He started him on Budenoside still thinking this may be a weird presentation of crohns. Please help! Has anyone ever heard of this with crohns? We have called another GI doctor for a second opinion. Prometheus test was done this AM. Any insight would be great.....
Thanks for reading.

 

[teeny5]

I have never heard of something starting to ulcer all of a sudden. That's odd! I had the Prometheus test done, but came out negative. My GI was unhappy, said the test was not reliable and that I definitely have IBD. He was hoping it would definitively say Crohn's or UC. CT scan, upper GI, blood work and colonoscopy all looked like Crohn's.

 

[gadgetninjette91]

"Confirmed" Crohn's case here, negative on the Prometheus. Except for the genetic markers, but the test is calculated using an algorithm which put my test in the negative anyway. Actually switched doctors because the one who ordered the test tried to dismiss me even though I was still having problems. The Prometheus test was created by the makers of entocort. I have a feeling it's a marketing gimmick. I wouldn't read too much into that test.

 

[UnXmas]

"Confirmed" Crohn's case here, negative on the Prometheus. Except for the genetic markers, but the test is calculated using an algorithm which put my test in the negative anyway. Actually switched doctors because the one who ordered the test tried to dismiss me even though I was still having problems. The Prometheus test was created by the makers of entocort. I have a feeling it's a marketing gimmick. I wouldn't read too much into that test.

If it were a marketing gimmick, wouldn't it be more likely to give false positives than false negatives?

Kathy - I've not heard of that happening before either. Has the doctor recommended any more tests besides the Prometheus? E.g. capsule endoscopy or small bowel MRI to see the areas not reached by normal endoscopes? Have they checked a stool sample for blood?

 

[SupportiveMom]

Prometheus test has a 92% accuracy. While that's pretty accurate there is potential for errors in any test. It is more reliable than any MRE or Colonoscopy in deciding IBD or not IBD, UC or Crohns. Still can be frustrating not getting clear cut answers. I skipped it for my kid when we were trying to determine UC vs Crohns. That rate of error is a bit bigger & for $500 I figured id wait until she gets a bit older.

 

[gadgetninjette91]

Prometheus test has a 92% accuracy. While that's pretty accurate there is potential for errors in any test. It is more reliable than any MRE or Colonoscopy in deciding IBD or not IBD, UC or Crohns. Still can be frustrating not getting clear cut answers. I skipped it for my kid when we were trying to determine UC vs Crohns. That rate of error is a bit bigger & for $500 I figured id wait until she gets a bit older.

Really? My doctor said a biopsy has way more merit in confirming a diagnosis than Prometheus. Have read that the accuracy rates are much lower than 92%.

 

[gadgetninjette91]

If it were a marketing gimmick, wouldn't it be more likely to give false positives than false negatives?

Kathy - I've not heard of that happening before either. Has the doctor recommended any more tests besides the Prometheus? E.g. capsule endoscopy or small bowel MRI to see the areas not reached by normal endoscopes? Have they checked a stool sample for blood?

I'd imagine so. Not sure who they're trying to sell it to if it's even got anything to do with marketing, but I know the test is not FDA-approved and even says that it's not a good diagnostic tool by itself (I read the disclaimer carefully). Endoscopy/radiology seem way more reliable than this test to me, I don't know. Just my two cents based on my experience.

 

[SupportiveMom]

Biopsy I am told is the most reliable. The 92% is what the fine print says. MRE is more reliable than colonoscopy. I am shocked at this stage there isn't a more reliable confirmation except removal & disection.

Different docs have given my kid different diagnosis so I now tell people IBD until I know for sure, if that day ever comes.

 

[2thFairy]

Prometheus accuracy is MUCH lower than 92%. I don't have the statistics in front of me, but several GI docs have told me it is lower than 60%, probably closer than 40%.

 

[2thFairy]

Prometheus test has a 92% accuracy. While that's pretty accurate there is potential for errors in any test. It is more reliable than any MRE or Colonoscopy in deciding IBD or not IBD, UC or Crohns.

Not true. Visualization (upper endoscopy, colonoscopy, MRE, PillCam) and biopsy is more reliable than Prometheus test.

 

[Lady Organic]

Im sorry about your husband Kathy. Friability of mucosa is a term and symptom often present to describe Ulcerative colitis. extreme to this point seems quite unusual I admit. Often a colitis remains indeterminate and doctor cant tell exactly if its CD or UC, or even possibly another entity, so they call it indeterminate colitis.
However, if your husband has been given Budesonide, it is most likely because the found those ulcers in his right colon? Where were those ulcers in his colon, do you remember which part of the colon?

Its no big deal if a clear name is not given to the inflammation of the colon, medications are basically the same for the 3 types: CD , ulcerative and indeterminate colitis. your Husband seems to already have CD of upper GI track. I dont know how this prometheus test could be able to understand both upper and lower Gi track inflammation if they are of different natures...

 

[SupportiveMom]

Not true. Visualization (upper endoscopy, colonoscopy, MRE, PillCam) and biopsy is more reliable than Prometheus test.

The rate is directly on their literature. Never heard of anyone getting a Prometheus test before a scope. Normally it is to further confirm what docs have seen on an MRE or colonoscopy as an additional diagnostic tool.

Biopsy is the most reliable. Visually not everyone presents clearly. MRE, PillCam & scopes are visual. Even with the 6 scopes, 3 MREs in 3 years we still aren't sure what from of IBD my kid has. For those that are not classic cases Prometheus is supposed to better define that where a doctor can not easily confirm visually.

 

[Kathy1109]

Thanks everyone. We followed up with GI today and the Prometheus is positive for Crohns. He is treating it as such even though everything else has been negative (biopsies, bloods etc..). He has already been taking Budenoside (I question whether this will even work on the duodenum) and they added Pentasa 2 tabs 4 times a day to the mix. A CT is ordered and they will rescope in early September. Very concerned and feeling very overwhelmed!

 

[Mr chicken]

Pentasa used as a monotherapy for crohns in many studies has been shown to be about as effective as giving an aspirin to a patient with a brain tumor
Not going to hurt much but not going to help much either
Pentasa is like cream for just the top layer of the intestine
It doesn't go through the layers which is why it works well for UC ( only affects top layer sometimes ) versus not as effective for crohns ( which goes through all layers ).

Some Gi start at the bottom of the med pyramid -Pentasa is just that
Then move up slowly
Others start at the top( biologics ) and get things under control before moving down

If Pentasa works you should see improvement in 4 weeks

DS started on Pentasa at age 7 - it did nothing
He got worse
He then moved to 6-mp

Good luck

 

[Kathy1109]

Thanks--the doctor told him the next step would be biologics which he doesn't really like to prescribe initially. Everything I have seen about people's experiences with duodenal crohns is that entocort and pentasa do not do much good.

 

[Mr chicken]

Yeah DS had it in his duodendum and about 10 other places so our Gi said entercort was out and DS had to chose between pred or een ( formula only no food for 6-8 weeks)
DS went with een .

 

[sunflower65]

I have had all the tests with full thickness inflammation showing on CT enterography twice, erosions in the areas of inflammation on pill camera and positive ASCA IgA and IgG on prometheus. Still no diagnosis. I am not sure what is needed other than a positive biopsy. Very frustrating.