Prometheus blood testing and camera pill

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Clcaj
Regular Member


Date Joined Oct 2007
Total Posts : 82
   Posted 1/30/2008 7:04 AM (GMT -7)   
Has anyone had the Prometheus blood testing done (the IBD testing done by a California lab), and if so, did it tell you anything?   How did your gastro react to it or change your therapy based on it? 
 
After 8 years with one too-laid back gastro that always said I had Crohns (based on a colonoscopy), I tried a new gastro who immediately ordered the blood tests because he doesn't think it's 'really been determined what I have', based on my medical records from my former gastro.   I get my results sometime next week and was wondering what other people's experience has been.   He also said the next step will be the 'camera pill'.
 
How does that the camera-pill work?
 
Thanks!
DX: mild to moderate Crohn's for 34 years
Additional benefits: chronic anemia, B12 deficient, peripheral neuropathy, facial mylagsia, joint pain, underactive thyriod
Current meds: Colozal, Nexium, Entocort, Flagyl, steriod cream, monthly B12 injections, Neurontin, Synthroid, Effexor ER, pain meds as needed


Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 1/30/2008 7:46 AM (GMT -7)   
I had the prometheus test done while in the hospital.  The doctors were starting to question even if I had Crohn's because of some strange symptoms.  Thought it might have been bechet's disease instead.  I can't understand why they questioned it because they had a view of it when I had my resection.  Anyway, the prometheus test did indicate I had Crohn's.  I know it's not 100% accurate but it can give doctors an idea if they are heading in the right direction.  I think it's a good idea to have it whenever there is a question about the diagnosis.
 
Turns out the strange symptoms was caused from bone-marrow failure caused by 6-mp and not bechet's disease.
Vicky / 48 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
 
Daughter (27) also has Crohn's since she was 12.
 
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 1/30/2008 9:02 AM (GMT -7)   
My Prometheus test came back as UC, so did my biopsy. But, the ulceration pattern and the fistulas/abscess and anal tags indicate Crohn's. I have a Crohn's dx and we pretty much ignore the other UC calls. I clearly don't have UC or I would not have the other stuff!
 
Forgot to add, I have never had a camera test.  I had a small bowel follow-through that showed nothing going on in the small intestine.  Since I have not had any symptoms in that area, we don't test that on a regular basis, just use colonoscopies.

CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 1/30/2008 9:46 AM (GMT -7)   
My doc used a combination of biopsies obtained from the colonoscopy and the Prometheus test to make my diagnosis.

The pill cam was no big deal at all. The hardest part was having to go so long without food. It was 24 hours total. Other than that, it was a piece of cake; no aweful laxative prep, no drugs, nothing. Just go in, they put a belt around your waist that has a battery pack and computer on it, tape six sensors on your abdomen and chest (warning: if you're hairy, shave your chest and stomach before you go in... I learned this the hard way), then you swallow the pill cam (about the size of a Centrum multivitamin) with a shot of water. Then you monitor the light on the belt. If it's flashing green, the system is still receiving images from the camera. When it stops flashing green, it means you've either pooped out the pill camera (mine went stem-to-stern in four hours. eek), or the battery in the pill camera is dead (it'll last for 8 hours). At that time, you return all the equipment to the doc's office, and you're done.


Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Pentasa 4 gm/day, started Humira 1/22/08. I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.

Post Edited (CrohnsDaddy) : 1/30/2008 11:03:52 AM (GMT-7)


Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 1/30/2008 10:27 AM (GMT -7)   
I was recently diagnosed with Crohn's based on the combination of colonoscopy/biopsies, ct enterography, and the Prometheus test.

My symptoms are mild, and the inflammation is restricted to ~5 cm of my terminal ileum. However, my antibody titers (especially CBir1 and OmpC) were VERY high. This made the GI doctor want to treat me aggressively, since based on a few recent papers, high antibody levels "may predict complicated small bowel Crohn's." I felt that approach to be misguided, so I'm looking for a new doctor.

The Prometheus test is one of several tools, but I would not give it too much weight. It is very accurate, not 100%. Some doctors (and insurance companies) consider it experimental, and there have been no prospective studies that actually test whether treating someone based on their antibody titers, rather than their symptoms, is effective in the short or long term...and I'm not volunteering to be the guinea pig :-P

Best of luck figuring this all out!
 


CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 1/30/2008 11:05 AM (GMT -7)   
Illini said...
I was recently diagnosed with Crohn's based on the combination of colonoscopy/biopsies, ct enterography, and the Prometheus test.

My symptoms are mild, and the inflammation is restricted to ~5 cm of my terminal ileum. However, my antibody titers (especially CBir1 and OmpC) were VERY high. This made the GI doctor want to treat me aggressively, since based on a few recent papers, high antibody levels "may predict complicated small bowel Crohn's." I felt that approach to be misguided, so I'm looking for a new doctor.

The Prometheus test is one of several tools, but I would not give it too much weight. It is very accurate, not 100%. Some doctors (and insurance companies) consider it experimental, and there have been no prospective studies that actually test whether treating someone based on their antibody titers, rather than their symptoms, is effective in the short or long term...and I'm not volunteering to be the guinea pig :-P

Best of luck figuring this all out!

 
My insurance company is one that considers it experimental. It's costing me 450 bucks out of pocket. Make sure you find out in advance if your insurance will cover it.
Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Pentasa 4 gm/day, started Humira 1/22/08. I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 1/30/2008 11:13 AM (GMT -7)   
There are several Prometheus tests for IBD available. The initial test, prior to the new Lactoferrin, etc. test, definitely indicated positive for Crohn's. But I felt the test was a waste since we KNEW I had Crohn's. I'd had a resection in 1978 at Mayo Clinic for Crohn's. (Then was blessed w/a 20 year remission!).

However, I am a believer in the use of the Prometheus ProPredict Metabolite test to monitor therapeutic level for the Imuran I am taking and possible hepatotoxicity. I know we do the regular hepatic function panel and CBCs w/differentials and platelets but I still prefer we also run the Prometheus ProPredict when I've had a weight change or increase in symptoms, etc.

As for the Pill Camera Endoscopy: I haven't had one yet, my gastro and I are discussing it. I refused one until Givens came out w/the dissolvable pill and my gastro was able to convince the local hospital (the hospital I DISLIKE) that does the PCE to get one in for me. (Odds are too good of the PC getting stuck as we know I have a partial obstruction at the resection anastomosis).

Since I tend to constipation rather than diarrhea my gastro asked that I chart my BMs the last two weeks and I was to go in and see her this past Monday when we would further discuss and decide on the whether to do the PCE and most likely would have swallowed the dissolvable pill then. Unfortunately I was packed off for a cardiac stress test instead. I'm rescheduled to see my gastro about the PCE in two weeks.

I will have to do a bowel prep for the PCE. I am NOT even going to consider doing one for the dissolable pill. It is NOT necessary and no way are she or her NP going to convince me otherwise!!

So: if an obstruction or partial obstruction is suspected, prior to trying the PCE itself, Givens has produced a pill the exact same size as the PCE that has a VERY small rod in it that is detectable by xray or a hand held wand they developed. The patient swallows this pill. The pill is guaranteed to dissolve w/in 3-4 days so if there is an obstruction that it can't pass thru it doesn't create an emergency. It will eventually dissolve w/in that time period w/ocreating injury.

I've read of those who have some difficulty getting a pill that large down being given a gel or slippery type substance on the pill to help it slide down the throat and esophagus.

They then can do an xray to determine whether the dissolvable pill has been passed (remember the tiny rod in it). If the dissolvable pill passed then the PCE will and you are a candidate to have the PCE.

Prior to the adminstering of the PCE I will have to do a prep. (D*mn!). The PCE takes 1,000s of pictures as it passes thru the intestines. Of those 1,000s of pictures the 'puter software singles arranges them in frames of 4 pics per frame. The doctor then goes thru those frames which takes about 2 hours and picks out any suspicious pictures which can then be reproduced and printed out for the doctor and patient. (I'd rather sit thru the 2 hours w/the doctor and see for myself).

My understanding is that there is proprietary software (mucho expensive) that not all places utilizing the PCE purchase, that will put those pictures positive for lesions on CD/DVD but that this local hospital only provides printouts of those pictures as they didn't invest in the mentioned software. Grrrrrr!

If one doesn't SEE the PCE pass from the body then an xray can be done to see if it has passed or is still lodged in the intestines somewhere. And THAT, of course, does eventually produce a problem if it doesn't pass. Doing the dissolvable pill successfully first should negate that problem.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 1/30/2008 11:19:15 AM (GMT-7)


Chasity102304
Regular Member


Date Joined Nov 2007
Total Posts : 165
   Posted 1/30/2008 3:50 PM (GMT -7)   
I did the camera pill on Valentines day last year. I was having lots of pain and many other issues, but colonoscopy didnt tell much. The pill is fairly large but was covered in a slippery gel type material that made it easy to swallow. The battery pack and computer is bulky but I stayed home that day so no one thought I was a bomber or something. HA! Initially I was told that IF the camera got stuck, they would know and could do xrays to locate and then remove with minor surgery. At my next GI appt (which I think was early March) I was told that the camera passed. March 9 I had an exploratory ob/gyn surgery thinking MAYBE these were female issues that I had in the past recurring. Nothing! The next appt in April I was told that the camera may have gotten stuck at the end but eventually came out. I never actually SAW the camera come out but wasn't concerned becasue they said I might not notice it. In May I had a ct enterography because I was still in MAJOR PAIN!! The xray tech told me there was something "metal" showing on the film. I FREAKED OUT!! I had had many surgeries so all I could think was that someone left something inside of me and that's why I was having all these issues. A week later I see my GI who tells me that the camera is STUCK in my small bowel where there was partial blockage. UGH!!!! I was so upset!!! At the end of May I saw a surgeon who wanted to do a colonoscopy to see if he could remove the camera without surgery. By the end of the appt I was so upset thinking that I have this partial blockage and a camera stuck in me, yet they want to do ANOTHER colonoscopy and if that doesn't work they will do surgery. I was in tears telling him how my life was a mess becasue of this everlasting pain!!! They scheduled the bowel resection for July 12. They ended up taking out 14 inches of small bowel that was fused together into a ball...this is where the camera was stuck and the blockage was. They also took out 4 inches of my colon. Not that I want to make the camera sound bad...I just wanted to give MY experience! It was the only way we knew I had the blockage..but found out in a nasty way.

GOODLUCK!!!
Fibromyalgia DX March 2003
Crohn's DX Jan 2006 (Symptoms since 96-Misdiagnosed as "female" problems-Major flare during pregnancy in 05 which lead to DX)
1st resection July 2007
Currently on Remicade/8 weeks


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 1/30/2008 4:47 PM (GMT -7)   
EGG-XACTLY why I would NOT agree to the PCE w/o doing the dissolvable pill first. I don't know what the xtra cost for the dissolvable pill is - but we KNOW that I have a partial obstruction at the anastomosis so WHY would anyone even THINK that I would be foolish enough to agree to a PCE w/o doing the dissolvable pill first? Duh!
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

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