Newly diagnosed and a little confused

[taureantiger]

I was diagnosed with moderately severe Crohn's Disease a little over three months ago. Further tests showed both my small and large bowel are affected. I am currently taking Pentasa and Azathioprine (100mg daily).

I have today received a copy of a report from my GI to my GP, saying my TPMT level is "low normal suggesting that she may be at slightly increased risk of adverse events from Azathioprine" and that he would follow up on this when he sees me again in two months.

My 6 GT levels are not available as yet (I live in NZ and our blood tests for these two things are done at a laboratory in Christchurch. Due to the lab being affected by a major earthquake in the city last year, test results are very slow coming through).

I have several questions I'm hoping someone out there can help me with.

1/ Does it seem normal that I should wait two months before my medication is reviewed?

2/ I have forgotten to take my medication on more than just a few occasions. Could this affect my TMPT levels?

3/ If I become more diligent about taking my medication, will this help, or will it have an adverse affect?

 

[David]

Welcome! I'm really glad you joined TPMT can be a bit confusing but as I understand it (I've read up on it quite a bit) here is my interpretation and thus my answers:

1. If they are monitoring your blood levels (stuff like WBC, RBC and platelets) closely, meaning getting routine blood tests every week or two (at most), then it's not a huge deal as that will tip them off if something is going wrong that is affected by TPMT levels.

2. Not in any meaningful way as far as I can see. Taking your medicine does affect your levels though which is why TMPT is supposed to be tested before you ever get your first dose of a thiopurine. What good is finding out you're completely deficient in TPMT if you're already experiencing myelosuppression because they started you on the med before getting the results?

3. I can't see it making a difference. Well, I can, but it would take a novel to explain and the statistical probability is low so why confuse both of us Simplistically put, you're either going to have an adverse reaction based upon TPMT levels and genetics and your current dosage or you're not. But take your meds diligently

 

[Angrybird]

Hello and welcome to the forum. I agree that you will either have a reaction to a med or you won't, it is important though to make sure you are taking the med properly otherwise how is it going to settle in the system as it should and do it's job....

How are you feeling at the moment? Has there been any improvement in your symptoms?

AB
xx

 

[Josephine]

Welcome and hope you feel better soon.

 

[taureantiger]

Thanks everyone. And you are quite right, I need to make sure I take the meds regularly.

So far I've been pretty good, Angrybird, and have had little in the way of severe symptons since starting treatment.

I was fine with taking prednisone but felt pretty yuk when I swithched to the Azathioprine. But I took the advice? of someone on this site and starting taking them at night and all has been good till now.

Lately, though, I have been getting some odds pains...last night it was in my left groin and going down my thigh...but that has gone this morning.

I was really just concerned that if I did start taking my meds properly, I would get the full dose of the azathioprine and trigger a reaction.

Other than the low normal TPMT, all the other blood tests have come back fine.

Because I have been doing so well, I'm down to having blood tests once a month and seeing the Gi every two months.

But good call guys, if it's going to happen it's going to happen...and I can deal with it then.