Imuran/6-MP and Genetic testing

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ognibene
Regular Member


Date Joined Apr 2003
Total Posts : 22
   Posted 8/21/2010 2:24 PM (GMT -7)   
Hi everyone,

After being mostly in remission the past 7 years, my doc and I agree that it is active again. Now she wants me to start Imuran, but told me that we had to do a genetic/enzyme test first. I don't have a problem with that, but what I do have a problem with is my insurance. They won't pay for it. The way I understand it is that they won't pay, because only 10% of the people that get tested CAN NOT metabolize the medication and 90% CAN.

My question to you all is this: Did your doc order e test for you or did he/she just started you on the meeds and just did regular blood work every 2 weeks. If so, did it go well for you or did you have problems? On the other hand if you did had the test, did your insurance give you problems and where you able to get it approved after all!

My doc says it is standard testing for that medication and after doing a lot of research online, I feel I don't want to start the meeds before getting the test done. With my luck I will have issues, since I do not do anything by the book when it comes to CD.

tooth
Regular Member


Date Joined Jun 2010
Total Posts : 337
   Posted 8/21/2010 3:04 PM (GMT -7)   
I never heard about a test to see if your body will metabolize Imuran. I've been on it for about 7 years now and when my doctor started me on it, he just put me on it and checked my blood work weekly for a month and every month after that.

I've never had any problems with the medication. Once I tried to up my dose to 100mg about 3 years ago and my white count dropped to a low side of normal, so my doctor put me back on 75mg which I took until I recently made the jump to 100mg again. Have not any problems yet and the 75mg I took for those 7 years kept me in remission for that amount of time.

The only side effect I've ever had from Imuran is that I bruise pretty easily, have more scars, get sunburned really easily and it takes my cuts a few more days to heal then before. But those were all a small price to pay for keeping my disease from being active.
Diagnosed 2002 at 18. Remission for about 7 years. Getting back into the swing of things at 26.

100mg Imuran, 750mg Balsalazide 3x day, Flagyl (death pills. yuck)

Flaring...

Had to abandon SCD...for now.

ognibene
Regular Member


Date Joined Apr 2003
Total Posts : 22
   Posted 8/21/2010 4:36 PM (GMT -7)   
I have been doing a lot of research on the genetic test. Here is an example of what I found and that is why I am concerned.

"Azathioprine is converted into 6-MP in the body and 6-MP then is partially converted in the body into inactive and non-toxic chemicals by an enzyme called thiopurine methyltransferase (TPMT). These chemicals then are eliminated from the body. The activity of TPMT enzyme (the ability of the enzyme to convert 6-MP into inactive and non-toxic chemicals) is genetically determined, and approximately 10% of the population in the Untied States has a reduced or absent TPMT activity. In this 10% of patients, 6-MP accumulates and is converted into chemicals that are toxic to the bone marrow where blood cells are produced. Thus, when given normal doses of azathioprine or 6-MP, these patients with reduced or absent TPMT activities can develop seriously low white blood cell counts for prolonged periods of time, exposing them to serious life-threatening infections."

I know it is a low percentage, but if you consider how many people don't have insurance that would cover the cost for the test and therefore don't have the test done, by how much would the %age grow?

Since my diagnosis and ultimately my first surgery I have not been the typical CD patient.
Everything happens for a reason, sometime it just takes longer to find out what the reason is!

tooth
Regular Member


Date Joined Jun 2010
Total Posts : 337
   Posted 8/21/2010 5:11 PM (GMT -7)   
Honestly, I'm not sure how much the percentage would grow if the test was done. But I think since it sounds like 10% is standard, I don't think the percentage would raise if insurance companies started paying for the test. As far as I know, that's why blood levels are checked every week for the first month because people who would have an adverse reaction will have a very fast drop in WBCs. At any point, the white blood cells plummet the GI takes the patient off the med and the white blood cells normalize.

If you're concerned about having the test done, you could try appealing your insurance company's decision to not pay for the test. Sometimes they cover them, if you write a letter and explain to them why its neccessary.
Diagnosed 2002 at 18. Remission for about 7 years. Getting back into the swing of things at 26.

100mg Imuran, 750mg Balsalazide 3x day, Flagyl (death pills. yuck)

Flaring...

Had to abandon SCD...for now.

ognibene
Regular Member


Date Joined Apr 2003
Total Posts : 22
   Posted 8/21/2010 5:24 PM (GMT -7)   
My insurance denies payment, now my doc is trying to change their mind.

I really would like to have the test done, so that in my mind I can be at ease when I finally do start the new meds.

LabCorp used to do the testing and the daughter of a colleague had the same blood work done back in May. Insurance paid without a fuss. Now it is August, LabCorp and any other lab in network no longer do the testing, now it has to be sent off to Prometheus and they are not cheap and of course not in network.

If it wouldn't have been for that, I bet that my insurance would have paid.
Everything happens for a reason, sometime it just takes longer to find out what the reason is!

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 14166
   Posted 8/21/2010 5:31 PM (GMT -7)   
I had the test before starting 6mp and my insurance covered it without any questions. I did have to have bloodwork every 2 weeks and now every 4 weeks. My CBC and liver panels have always come back normal but I did have a special test recently that showed slightly increased liver enzymes and I don't think I am seeing too many benefits from the drug. It is unfortunate, I thought it would help me more.
March 2007: Diagnosed with Mild Proctitis - Canasa as needed.
August 2008 - December 2008: FLARE & Anemic - Started Asacol!!
January 2009 - December 2009: REMISSION!! Asacol (9) + Canasa 2x Daily
December 2009 - January 2010: FLARE!! Asacol + Prednisone + Canasa
February 2010 - April 2010: Colazal + Prednisone + Canasa
May 2010 - June 2010: Lialda + Cort Enema + Prednisone : Colonoscopy: Mild / Moderate Active Pancolitis
CURRENT: DOING OK! Prednisone, 6mp, klonopin, Canasa + Vitamin D

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 8/21/2010 6:18 PM (GMT -7)   
My doc ordered that test for me before starting me on imuran.  My insurance balked a little bit but ending up covering it.
 
It's not terribly expensive (relatively speaking, that is) - I think it's three or four hundred dollars.  That might be a lot to a patient, but to an insurance company it's not much at all, when you consider a single night in the hospital can cost thousand of dollars.
 
The test is becoming more and more common before starting imuran or 6mp.  Having the proper genetic makeup to metabolize these drugs does not guarantee that you will tolerate them well, but *not* having the proper genes to metabolize just about guarantees you'd have problems, potentially serious problems at that.  From that point of view, I think the test is worth it for you and for the insurance company.  Have your doctor appeal them and tell them it's cheaper to do the test than to pay for you to be in the hospital if you take the drug and find out after the fact that you can't metabolize it.
 
Studies of large populations have shown that 90% of people have the genes to metabolize it properly, while 10% of people don't.  Of that 10%, most (about 9%) are partial metabolizers, meaning they can metabolize only smaller amounts.  The remaining 1% have a genetic mutation that makes them unable to metabolize these drugs at all.  For those, it could lead to serious consequences with just a dose or two.
 
Like I said, even those people in the 90% who have the proper genes to metabolize these drugs still need to have blood tests done and be followed by their doctor after starting 6mp or imuran, because they could still potentially have problems, but if you're in the 10% (or especially the 1%), it's pretty much a guarantee you'll have problems.
 
Appeal with your insurance.  In the end, it might be cheaper for them to just pay for it than to fight your appeal too long!

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 8/21/2010 6:26 PM (GMT -7)   
I found that it was a good idea...I was one of the heterozygotes that could possibly have issues with it...because of this they had me on a lower loading dose, and were VERY cautious...with good reason...I ended up with pancreatitis, but not severe enough that I need intervention...I just had to stop the medication, and was told never, ever to try it again...others have had to be hospitalized...so this actually SAVED the insurance company money...because they were warned...and because I had two docs pushing for it (my GI and Rhuematologist), it seems when you have two docs calling the insurance company, things get done...good luck...
"The earth laughs in flowers"

ognibene
Regular Member


Date Joined Apr 2003
Total Posts : 22
   Posted 8/22/2010 3:57 AM (GMT -7)   
Thanks everyone for your comments. I'll give you an update once I find out from my doc what's happening.

I am tired of being in pain again and just want to be able to move on. I guess I got spoiled by being in remission for so long :)
Everything happens for a reason, sometime it just takes longer to find out what the reason is!

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 8/22/2010 7:27 PM (GMT -7)   
There are actually two tests. 
 
1)  The TPMT genotype test tests to see whether you have the ability to make the enzyme necessary to metabolize the medication BUT it is not foolproof and it is not able to tell you whether you have enough of the enzyme to do the job.  
 
2) The other test checks to see how much of the TPMT you have.
 
Since it is important to measure the quantity of the enzyme made, test #2 seems to be the most important.

Post Edited (njmom) : 8/23/2010 10:21:31 PM (GMT-6)

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