Backache

MLP her liver tests have all been good there's been no change at all....maybe that's why he wasn't worried. But still why would he wait 4 months to do next blood test....it doesn't sound right to me.

I think the adult GI might be the way to go...I just need to calm down first before l make a decision.

Ugghh, terrible that you have to have this additional worry! :ymad: I would call the GI and just ask for clarification re the elevated levels - hopefully, you'll get some reassurance. :ghug:

How frustrating! Sorry it was such a waste of time. Hope you manage to get some help sooner than 4 months.

I tried to ring the nurse to discuss the lmuran levels but she's not answering.
So l've sent her an e-mail.....now lets see if she replies.

The other thing about this test is it not an approved test, so the test can't be claimed on the medicare system. So the hospital may be wearing the cost for the test.

I think our Nurses generally take a working day to get back to us. I hope you hear back soon. Do they not know how awful it is waiting for a call back!!

No reply from the nurse..:voodoo:

I'll try again on Monday.
If l don't get a reply by next week l think it might be time to move on.....but for some reason l'm scared of changing DR's.

Ugh upsetmom, I am so sorry that you are going through this worry and waiting. :ghug: :ghug:

It surely is hard making the move from one doc to the next when the person it affects most is not yourself. Thinking of you hun.

I will tag Aussie into this regarding metabolite levels.

Dusty. xxx

Hi UpsetMom and Dusty.

Thiopurine metabolites are a tricky area.

6TGN (thioguanine nucleotides)
In studies done in this area, you do need the 6TGN to be above 235, although studies do show benefit upto 400 or so. If the levels get too high, then you can see bone marrow suppression, usual fixed by reducing the dose.

6MMP (methyl mercaptopurine)
Again, studies to show an increased risk of hepatotoxicity (liver inflammation) with levels above 5700, so you would look at your ALT and AST and see if it is trending up. Again, can be fixed with a dose reduction.

The tricky part is the test isn't that accurate - you might see the levels jumping all over the place occasionally, it really depends on how long the blood is kept before doing the test (before 2 days is ideal). Given the test is done infrequently, some labs will stockpile the blood until they get enough requests and then do a bulk run, or perhaps only test a few times per week. Ideally, to get accurate results, you should have the blood tested as soon as possible after collection.

What you can do is repeat the test and watch for a trend. If the levels are stable and the ALT and AST are fine, and there is no evidence of bone marrow suppression (low WCC, low neutrophil count), then continue as is. If there is a some evidence of toxicity, then you can decrease the dose.

With levels of 7750 for 6MMP and 581 for TGN while on Imuran 125, then you could watch the blood tests frequently, or perhaps drop to 100mg of Imuran and recheck levels in four weeks. The other important point would be, what were the levels at 100mg of Imuran, if they were low at that level, then you would be better of holding at 125 and watching the WCC and LFTs (ALT and AST).

Best wishes.

Thanks Aussie. Loads of good info there.

Thanks Aussie...

This is the answer l got from the nurse.

The levels are less than they were last time and all her other bloods look normal. So no concerns from the team here.