Prometheus Lab tests

Did your prometheus IBD lab results match your colonoscopy/biopsy diagnosis?
9
Yes - 50.0%
5
No - 27.8%
4
Maybe-unsure right now (please explain) - 22.2%

 
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jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 10/25/2009 9:43 AM (GMT -7)   
Just curious about the accuracy of the Prometheus lab tests for IBD. I am taking a poll.
diagnosed 1/09 with "diverticular colitis" ?? location, sigmoid colon
localized scleroderma & IBS, low thyroid
 50 +  female
 colazal, fish oil, synthroid, zoloft, VSL#3 probiotic.
Blood test positive for Crohn's
 


vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 10/25/2009 6:13 PM (GMT -7)   
I was diagnosed with Crohn's in 2006 based on a colonoscopy (and biopsies). A colonoscopy (and biopsies) this September showed no signs of disease activity, so my GI ordered a Prometheus test. The results of the test showed patterns consistent with UC.

This really says nothing about the accuracy of the Prometheus test, however, as I still have no idea which (if any) diagnosis I have received is correct.
29f, PhD student, originally diagnosed with Crohn's in 2/06
10/09: Prometheus test shows results consistent with UC
10/12/09: beginning treatment for arthritis
Currently taking: 7.5mg methotrexate weekly (pills), 2g Pentasa, tapering from 20mg prednisone, 150mg Trazadone, multivitamin, vitamin D, magnesium, probiotics, folic acid


MichaelR
Regular Member


Date Joined Aug 2009
Total Posts : 34
   Posted 10/26/2009 10:32 PM (GMT -7)   
The blood test results always look great. I recently had a colonoscopy and MRI, that showed active inflammation. W-T-F.

DFBDAR
New Member


Date Joined Nov 2009
Total Posts : 3
   Posted 11/14/2009 1:26 AM (GMT -7)   
Colonoscopy came back . inflammation all down the right side of my colon, biopsies negative for crohns,,,but prometheus test positive for crohns, now doc is gonna do a camera pill test.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 11/14/2009 10:24 AM (GMT -7)   
I hope the pill test goes well for you. Do you have to take the same prep for that as for the colonoscopy? Keep us posted Dar. So did they think the inflammation was UC? I have my apt next week.
diagnosed 1/09 with "diverticular colitis" ?? location: sigmoid colon
localized scleroderma & IBS, low thyroid,claritin, advair, singulair, lisinopril, progesterone, colazal, fish oil, synthroid, zoloft, wellbutrin, VSL#3 probiotic, Vit. D
Blood test positive for Crohn's via prometheus ibd serology panel
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 11/14/2009 5:01 PM (GMT -7)   
I'm the opposite. My blood tests were off the chart positive for crohns. My colonoscopy showed mild inflamation and nothing in the biopsies. I was diagnosed by symptoms and blood test. My blood test showed "severe" crohns, symptoms were moderate, colonoscopy showed mild if anything.
27 Year old married female lawyer.  Diagnosed w/ CD 5 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant but can handle anything cultured and do well w/ lactose pills and lactaid. For Crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 11/14/2009 5:07 PM (GMT -7)   
FitzyK, do you remember your numbers? My ASCA was 1:120. It was three times the cut off. My sed rate and crp have been high for years and nobody knew why....
diagnosed 1/09 with "diverticular colitis" ?? location: sigmoid colon
localized scleroderma & IBS, low thyroid,claritin, advair, singulair, lisinopril, progesterone, colazal, fish oil, synthroid, zoloft, wellbutrin, VSL#3 probiotic, Vit. D
Blood test positive for Crohn's via prometheus ibd serology panel
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 11/14/2009 5:10 PM (GMT -7)   
I don't. I have my records somewhere. I just moved and wouldn't even know where to look. I know it gave the number and then to the right gave a percent. Mine was 320% on the field about crohns. I'm also lactose intollerant too which I hear can make your numbers higher.
27 Year old married female lawyer.  Diagnosed w/ CD 5 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant but can handle anything cultured and do well w/ lactose pills and lactaid. For Crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 11/14/2009 5:32 PM (GMT -7)   
Yea, I am lactose intolerant too. I didn't get a percentage, just the titer. I have an apt Wednesday and can't wait to hear what they have to say about the test. I sure hope they switch my meds to something that will work. Colazal is not working. I just hope they don't want to scope me again-:) Be well-:)
diagnosed 1/09 with "diverticular colitis" ?? location: sigmoid colon
localized scleroderma & IBS, low thyroid,claritin, advair, singulair, lisinopril, progesterone, colazal, fish oil, synthroid, zoloft, wellbutrin, VSL#3 probiotic, Vit. D
Blood test positive for Crohn's via prometheus ibd serology panel
 


IBD Guy
New Member


Date Joined Dec 2009
Total Posts : 2
   Posted 12/16/2009 4:45 PM (GMT -7)   
Try another serology solution, IBDX, manufactured by Glycominds, uses 4 markers, including a form of ASCA, that are glycan-based markers. Ask your doctor to order this serology test. It can be run at Labcorp or ARUP laboratories. It is a much better serology solution.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 12/16/2009 5:19 PM (GMT -7)   
My docs say they don't use the lab tests much for adults. I guess because they feel it is ok to poke and prod us at will. Ha! I am having a repeat sigmoidoscopy in 3 weeks and a ct scan on monday, so I should have some more answers. The colazal is not keeping it under control. they did admit these diseases can evolve and change. I don't think they are ready to use the lab tests to diagnose me with crohn's yet but obviously with the test and my symptoms they want to look and biopsy.
diagnosed 1/09 with "diverticular colitis" ?? location: sigmoid colon
localized scleroderma & IBS, low thyroid,claritin, advair, singulair, lisinopril, progesterone, colazal, fish oil, synthroid, zoloft, wellbutrin, VSL#3 probiotic, Vit. D
Blood test positive for Crohn's via prometheus ibd serology panel
 


IBD Guy
New Member


Date Joined Dec 2009
Total Posts : 2
   Posted 12/16/2009 5:23 PM (GMT -7)   
You should ask for it. Some docs are reticent to use serology, but the tide is changing with top down therapies and markers that can assist in determining recurrent severe symptoms (prognostic testing). The nice part about the IBDX solution is that it is fully covered/reimbursable, using simple cpt codes. I wish you luck and don't let them prod, poke and cut you if you get answers using much less invasive means.

leysa
Regular Member


Date Joined Oct 2009
Total Posts : 111
   Posted 12/16/2009 6:04 PM (GMT -7)   
Mine came back negative for Crohn's and UC. However, all my other bloodwork points to active inflammation and Crohn's. Biopsies have been postive for focal active colitis. Right now I'm diagnosed as unspecified IBD.
30/f
chronic active colitis/possible Crohn's - unspecified IBD
Lialda 2x/day
Entocort 9mg 1x/day
Darvocet or Tramadol as needed


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 12/16/2009 6:36 PM (GMT -7)   
Wow, at least they put you on some strong meds. I've had a year of misery and all they put me on was colazal and some rectal meds that I hate. So, now they want more tests after my serology was positive.
diagnosed 1/09 with "diverticular colitis" ?? location: sigmoid colon
localized scleroderma & IBS, low thyroid,claritin, advair, singulair, lisinopril, progesterone, colazal, fish oil, synthroid, zoloft, wellbutrin, VSL#3 probiotic, Vit. D
Blood test positive for Crohn's via prometheus ibd serology panel
 


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 12/16/2009 7:12 PM (GMT -7)   
Mine was unsure - they don't know if it's Crohn's or Colitis. The Prometheus tests were ordered by my dr to help determine which, and he also said my insurance would cover them. Neither of those worked out for me, I had no new information and had to pay like $550. If I had the chance, however, to find out exactly what I had and to better treat it I probably would get it done. It's a big disappointment and expense when they tell you they just don't know though.
32 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, trying to remember to take Multivitamin and Calcium, need to start taking Probiotics and Omega 3-6-9 and Vitamin D
 
 


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 12/16/2009 7:40 PM (GMT -7)   
Sorry it didn't solve any problems for you. Yes, you are right, it is upsetting when when you are out so much money and still no answers. My medical bills this year were outrageous and I don't have a lot of answers yet either. Did you keep trying to get your insurance to pay for the tests and appeal the decision? Sometimes it is just too much of a hassle, so you just pay. I didn't even have that much done and my medical bills this year were almost 10k and that is my out of pocket cost. It was so much that I am almost at the point where my insurance picks up 100%. I might actually reach it with this next CT Scan, but it is too late in the year to help. Next year, we are changing to another insurance where our out of pocket won't be so much.
diagnosed 1/09 with "diverticular colitis" ?? location: sigmoid colon
localized scleroderma & IBS, low thyroid,claritin, advair, singulair, lisinopril, progesterone, colazal, fish oil, synthroid, zoloft, wellbutrin, VSL#3 probiotic, Vit. D
Blood test positive for Crohn's via prometheus ibd serology panel
 

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