Prometheus IBD Serology 7

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geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 12/2/2009 7:54 AM (GMT -7)   
Has anyone had this test done? If so, how accurate was it?

Although every pathology test done so far indicates UC, my dr also sees signs of Crohns. He thinks it's pretty much 50/50 if I have UC or Crohns. He said the test may help determine which disease I have, but that it could also come back without a firm diagnosis. My insurance doesn't cover the test and it's $445. I'm trying to decide if it's worth spending the out-of-pocket $$.

Thanks.
GeminiSunset</FONT>
Diagnosed w/IBS:
Oct. 2006 Jan. 2007 (proctitis), July 2008 (pancolitis)

<FONT color=#800080>1st Surgery for J-Pouch:
May 22, 2009 - need 2 more surgeries, dates TBD

Canasa </STRIKE>; ; <FONT color=red>Lialda; Prednisone;]Protonix; Remicade</FONT>;]Zyrtec-D; [color=#ff0000>Toprol[color=#000000>;


<FONT color=#800080>Current Status: Nov, 2009 - Still recovering from the 1st stage of J-Pouch surgery (need to gain back another 20lbs); temp ileostomy; 2 more surgeries to go as there was too much damage to create a J-pouch


JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 12/2/2009 10:23 AM (GMT -7)   
Try talking with your insurance company.  I had a doctor once do the test and my insurance didn't cover it.  However, because they are the only company that does the test, they said if he would right a note saying this, they would cover it. 

36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009


onedaymore
Regular Member


Date Joined Apr 2009
Total Posts : 111
   Posted 12/3/2009 7:53 AM (GMT -7)   
From what I've read, it's an accurate test.

I had it done about a year and a half ago. It wasn't expensive, even without insurance covering it. Only about $200 (which is way more than I pay out of pocket for CT scans!). They give you a big discount if you pay on the first bill, too.

Mine was very specific for Crohn's. It helped me get a diagnosis, and I think that without it and the pill cam, I would have continued to have been shuttled off from clueless GI to clueless GI.

In my opinion, it's definitely worth it to get it.
Diagnosed with Crohn's in 2008 at the age of 22.
Currently taking: Azathioprine, tramadol, welchol, promethazine
Surgeries: Cholecystectomy (2007)


leysa
Regular Member


Date Joined Oct 2009
Total Posts : 111
   Posted 12/3/2009 10:07 AM (GMT -7)   
I had it done and it was inconclusive. Not enough to be full-blown Crohn's or UC, but enough to classify me as unspecified IBD.
30/f
chronic active colitis/possible Crohn's
Lialda 2x/day
darvocet as needed
 


JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 12/3/2009 10:12 AM (GMT -7)   
leysa said...
I had it done and it was inconclusive. Not enough to be full-blown Crohn's or UC, but enough to classify me as unspecified IBD.

Same here.  I had it done twice and I still don't know what I have except that it is IBD.
36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009


leysa
Regular Member


Date Joined Oct 2009
Total Posts : 111
   Posted 12/3/2009 10:26 AM (GMT -7)   
Oh. It's also worth noting that it was a NIGHTMARE for me to get the test done, as there was not a single local lab that would draw the test. I had to make a 2 hour trip to Shands, and then spent the entire day there waiting while they tried to straighten it out with my insurance (even though my insurance had previously said they would cover it....). It was a mess. In the end I did have it done and it was covered, but man, I don't ever want to deal with that again. And, of course, in the end I still don't have a conclusive diagnosis. :(
30/f
chronic active colitis/possible Crohn's - unspecified IBD

Lialda 2x/day
Entocort 9mg 1x/day
Darvocet or Tramadol as needed


karasmommy
Veteran Member


Date Joined Mar 2005
Total Posts : 589
   Posted 12/3/2009 10:38 AM (GMT -7)   

I had the test done and it came back inconclusive - even though my Colonoscopy results and pathology definitely showed Crohn's - my dr. stuck with the Crohn's diagnosis from all the tests he did. 

my insurance at the time paid for the test 100%.


Ellen
Diagnosed with Lupus - April 2002
Diagnosed with Crohn's Disease (and all the lovely things that come with it) - January 2003 (problems since early 1990)
Fibromyalgia 2005 
Normal Meds:  Ambian 10mg, Flexeril 10mg as needed, Plaquenil 400mg, MTX 25mg Injection, Probiotics
"Extras" Right Now for Crohn's Flare:  Pred 5mg, Entocort 9mg


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 12/5/2009 7:16 PM (GMT -7)   
My insurance paid 100% and I was off the charts positive for crohns. My colonoscopy showed inflamation but they couldn't say if it was IBD or not. The blood test confirmed it.
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 12/5/2009 9:25 PM (GMT -7)   
I was told I had diverticular colitis but my asca was 129, which is way over the cut off for crohn's. My doctor wants to do another scope and ct scan. Getting them done next mont when new insurance kicks in. However, my doc feels these tests often muddy the water of diagnosis. I take it that means sometimes it correlates with the diagnosis and other times it doesn't. So, I don't know what it all means. I read somewhere that the asca can be positive if you have celiac. Has anyone else heard this?

My insurance covered my test. I think I owed $65 afterwards.
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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