Imuran/6-MP and Genetic testing

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.

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.

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.

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!

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 :)