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08-21-2013, 08:52 AM   #91
Johnnysmom
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My son's dose of 6mp was cut in half and the GI added allopurinol when his numbers reached 6-MMPN-6,968 and 6TGN - 606. Once we moved to Cincinnati our new GI felt Johnny's numbers did not necessitate adding the Allopurinol. Johnnys levels have sort of been all over the place and the GI doesn't really have an explanation for this but we are watching for a trend and hopefully some stabilization.

I think one high number is not anything to worry about but it seems there are different schools of thought on this. When Johnny's level was that high the GI ordered metabolite testing 5 weeks later. So if he is comfortable with this number for now, I would want a re-check soon.

The fun never stops does it?!?
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08-21-2013, 08:55 AM   #92
Johnnysmom
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Not sure if this was clear for you-

Anything over 400 for 6-TGN increases the likelihood of Leucopenia. Anything between 230-400 is in the "therapeutic range" and indicates a higher likelihood of remission.

The 6-MMPN shows damage to the liver. Anything over 5700 is a higher risk of Hepatotoxicity.
08-21-2013, 09:32 AM   #93
Mehita
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Our range is the same too...

For 6-TGN, between 230-400 is good. 6-MMPN, anything over 5700 is concerning.

Maybe the ranges are slightly different in Aus?
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08-21-2013, 02:08 PM   #94
upsetmom
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Thanks everyone.

He did tell me they were within the normal ranges but doing my own research they're not....I think its the same ranges everywhere.

Our next appointment is in 4 months.

I think it might be time to find a new DR as this one didn't seem concerned about anything...

I'm actually scared to give her her tablets...
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Last edited by upsetmom; 08-21-2013 at 02:33 PM.
08-21-2013, 02:15 PM   #95
723crossroads
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Went to see our GI today...I'm not very happy.

Blood test still shows inflammation ...CRP was 2 gone up to 7
ESR.... still at 42. Iron levels were also on the low side. GI said as long as she's feeling good he's not worried about about the blood test.

The pain she was getting after eating, he said it was probably cramping but now that its gone he's not worried so he doesn't want to do an MRI. He said if the pain starts again and she is vomiting as well then he might consider an MRI.

We told him that she gets back, ankle and knee pain but again he wasn't worried.

What a waste of a day...l could have just rang up and got the results over the phone.
But then they wouldn't get paid.....Sorry Mom!!!!
08-21-2013, 02:19 PM   #96
Stephyjane
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Gosh I feel for you. That's a really tricky one and I would feel exactly the same as you. Do you have an IBD nurse you could chat to or even a different doctor at the hospital. It does seem that everyone on here has the same ranges that the tests cover.
Being in the UK I dont know how it works in Australia, what about calling the Crohn's and Colitis association for advice.
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Scopes showed remission, biopsies showed mild inflammation.
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08-21-2013, 02:29 PM   #97
upsetmom
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We do have a nurse...but she just goes by what the DR says.

And the other DR l think only works on Thursdays and that day isn't good for us as my daughter has a lot on at school.
08-21-2013, 02:35 PM   #98
Johnnysmom
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I would call and discuss it. My son's GI in Cincinnati didn't think the levels were bad either. I would just say you know they are above normal and you would like to know why they aren't going to check her earlier than 4 months. I have done this before for other things and then once I speak to them I am satisfied with the reason given for why the GI is doing things. If your aren't satisfied with the explanation or they seem to just blow you off then I would start looking for a new GI.

I think the levels have to be high for a long time to cause any damage. Once you talk to the nurse or GI maybe you will feel better about giving her the tablets. I had a few times I wanted to give up on 6mp too, but I am glad I didn't. There are not a lot of options out there and you don't want to give it up till you have to. And now 6mp works great for my son.

Good luck!!
08-21-2013, 04:17 PM   #99
my little penguin
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How are her liver numbers ( AST/ALT)?
I know DS's numbers for 6-mp where high for a small amount of time -weeks-but GI was "ok" since his AST/ALT were ok.
that said it didnt take long a matter of weeks and his liver numbers went too.
WE immediately got a call from the GI to stop the 6-mp that night.


I would still look for another GI if you didnt like the explanation.
regardless of if it was a good schedule fit. since hospital stays tend to not fit onto a schedule either- what about an adult GI?
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08-21-2013, 04:49 PM   #100
Catherine
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http://www.healio.com/gastroenterolo...-monitor-patie

Numerically, 6-TGN levels of greater than 235 pmol/8 x 108 RBC correlate with an increased likelihood of response, while 6-MMP levels of greater than 5,700 pmol/8 x 108 RBC are associated with potentially dose-limiting hepatotoxicity.1-3

The above is article by Australian researcher.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
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Has previously taken Multi B, Caltrate, B12 & Iron

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08-21-2013, 07:01 PM   #101
upsetmom
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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.
08-21-2013, 07:21 PM   #102
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Ugghh, terrible that you have to have this additional worry! I would call the GI and just ask for clarification re the elevated levels - hopefully, you'll get some reassurance.
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08-22-2013, 03:10 AM   #103
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How frustrating! Sorry it was such a waste of time. Hope you manage to get some help sooner than 4 months.
08-22-2013, 09:08 PM   #104
upsetmom
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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.
08-23-2013, 02:11 AM   #105
Catherine
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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.
08-23-2013, 02:22 AM   #106
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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!!
08-23-2013, 02:30 AM   #107
upsetmom
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No reply from the nurse..

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.
08-23-2013, 07:03 AM   #108
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Ugh upsetmom, I am so sorry that you are going through this worry and waiting.

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
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08-23-2013, 11:20 PM   #109
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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.
08-24-2013, 12:08 AM   #110
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Thanks Aussie. Loads of good info there.
08-24-2013, 01:06 AM   #111
upsetmom
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Thanks Aussie...
08-26-2013, 01:59 AM   #112
upsetmom
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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.
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