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07-24-2013, 07:36 AM   #61
Catherine
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Asked about the 6TGN 6MMP hopefully it will be back.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
07-24-2013, 07:37 AM   #62
Johnnysmom
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The feeling full can also be somewhat psychological. My son experienced it because he had acid refux and nausea from eating. It was sort of a learned response. Eating=pain=don't eat, no pain. He would get most anxious around dinner time when eating out. It was unknowingly made worse by us because we would constantly bring attention to how much he wasn't eating. Horrible cycle. A PPI helped a lot. The prednisone helped too, either because it worked on the inflammation or just increased his appetite.

It is so stressful to see them not eating well, hope she is feeling better soon. ((((hugs)))
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Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
Vitamin D3 1000mg
Prayer
07-24-2013, 10:57 PM   #63
DustyKat
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How are things going upsetmom?

Have the Tums made a difference?

Dusty. xxx
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07-25-2013, 12:32 AM   #64
upsetmom
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So far so good.. but l don't know if it's from the tums as she sometimes doesn't get pain for a few days.

I tried ringing to change the appointment but the answering machine kept coming on.
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Daughter dx CD March2012...
(aged 14)

Currently on:
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Dx Premature Ovarian Failure 2014



07-25-2013, 12:43 AM   #65
DustyKat
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Well I hope it's the Tums and not the days between attacks!

Ugh, bloody answering machines! At least it's Thursday so hopefully you either get a response or get onto them before the weekend. Good luck!

Dusty. xxx
07-26-2013, 03:32 AM   #66
upsetmom
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No luck getting through. I think they must have been closed as the recorded message said to ring between certain times and l kept ringing all day.

Anyway l received a script in the mail for Nexium with a note from the nurse that said try this to see if pain the eases.

She's had no pain so tomorrow l might stop the Tums and see if the pain returns. I'm still not convinced that this is acid so l'm not sure if l should give her the Nexium or not. A few months ago l asked my GP about PPI and he told me once someone starts a PPI its usually for life ...l don't know how true this is...l don't want to add another med if it's not necessary.
07-26-2013, 04:17 AM   #67
DustyKat
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The problem with PPI cessation is debatable. I have seen studies that suggest there is little problem when ceased but most indicate there is a problem with rebound reflux. To give your daughter Nexium for a short period of time is not the issue and IIRC the sort of time frames I have seen suggested for rebound reflux to occur is 8 weeks plus. Don't quote me on that though!

Rebound reflux is when the symptoms that the drug is mean't to treat by reducing acid production actually become worse when the drug is ceased as the body starts producing more acid than before the PPI was commenced. This issue should abate over time though as far as I know.

I am wary in prescribing meds when the indication to do so is uncertain but in view of the symptoms your daughter has I don't know that you could say there is no indication for it. I personally don't feel that a short regime will be detrimental and may well give you the answer you need one way or the other. I would commence the Nexium when the pain starts up again and go from there.

Dusty. xxx
07-26-2013, 05:03 AM   #68
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A few months ago l asked my GP about PPI and he told me once someone starts a PPI its usually for life ...l don't know how true this is...l don't want to add another med if it's not necessary.
What prompted you to ask? I don't blame you for your skepticism about starting the meds! It doesn't seem very professional for them to prescribe meds based on phone conversations!

I know it's not the same situation but my son was on Nexium for both of his pred courses over the last few years. He stopped both times w/o problem. He's never had acid reflux though. I think it's just standard to take ppi with pred.
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07-26-2013, 06:32 AM   #69
upsetmom
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What prompted you to ask?
They tried to put her on a PPI awhile ago when she was having stabbing chest pain.

I've had a bad experience with a PPI. I was put on it for 4 weeks when l didn't even have acid to begin with. When l was told to stop it by my current GP l had a lot of trouble trying to get off it...the rebound was horrible...That's why l questioned my GP if l had trouble after 4 weeks what would the rebound be after a few months.

I want to be 100% sure its acid before l put her on a PPI.

Last edited by upsetmom; 07-26-2013 at 07:13 AM.
07-27-2013, 05:34 AM   #70
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I want to be 100% sure its acid before l put her on a PPI.
One would think that statement would come from the doc!!
07-27-2013, 08:28 AM   #71
my little penguin
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There is a ph probe study they could do to see if its acid but you have to stay overnight in a hospital for that one .
You can wean off a ppi but you have to do it very slowly to avoid rebound reflux
.
As in decrease a tiny but using a kitchen gram scale each week or two .
07-27-2013, 03:55 PM   #72
upsetmom
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Thanks everyone l've decided to put my own bad experience aside and if the pain starts again she's going to try the Nexium. Hopefully the pain doesn't return.
08-18-2013, 06:11 AM   #73
upsetmom
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I'd thought l'd update..... I'll probably speak too soon.

No pain at all after eating for a few weeks so she never started the nexium.
Still occasionally getting back pain but apart from that everything's been good.

We have an appointment with GI on Wednesday.
08-18-2013, 06:18 AM   #74
DustyKat
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Thanks for the update upsetmom and what a fab one it is!

I am so glad to hear that things have settled and I hope it continues that way!

Good luck with the appointment on Wednesday. Fingers, toes and everything else crossed that all goes well!

Dusty. xxx
08-18-2013, 07:19 AM   #75
my little penguin
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Hope it goes well Wednesday
08-18-2013, 07:41 AM   #76
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I hope your appt goes well.
I never knew that about PPI's so thanks for that info. My daughter was put it on last June 2012 when on Pred at 15 mg Lansoprazole, she has been off it a couple of times but is now on 30 mg a day. She still has what I think sounds like heartburn and chest pain.
The only thing the dr told me when she came off it was alt days as she may get stomach pain.
This is site is so informative. Thank you.
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Mum to Ella diagnosed with Crohn's disease June 2012 aged 9yrs


Medications:
125mg Azathioprine

3 monthly bloods and calprotectin.

Past Medications

Lansoprazole 30mg
Ferrous Fumerate iron

Infliximab infusion on hold due to reactions.
Scopes being done Mar 2014 to determine whether Ella can maintain without infliximab.
Scopes showed remission, biopsies showed mild inflammation.
Sulfasalazine stopped due to neutropenia
E.N tried and failed.
08-18-2013, 06:26 PM   #77
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Hope the appt goes well! Will keep my fingers crossed for you guys!
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
08-21-2013, 04:21 AM   #78
upsetmom
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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.

Last edited by upsetmom; 08-21-2013 at 05:26 AM.
08-21-2013, 05:10 AM   #79
Catherine
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Have you got the results for the aza levels yet?
08-21-2013, 05:21 AM   #80
upsetmom
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Therapeutic Drug Monoitoring

6 Methyl Mercaptopurine level....7,750
Thioguanine level....581

Are these it?

He said they were good.
08-21-2013, 05:36 AM   #81
Dexky
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She's on 6mp and Thioguanine?
08-21-2013, 05:39 AM   #82
upsetmom
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She's on Pentasa and Imuran.
08-21-2013, 05:53 AM   #83
Dexky
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Where does thioguanine come into it? Is it metabolized from the Imuran?
08-21-2013, 05:53 AM   #84
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Hi I'm sorry to hear it wasn't a worthwhile appt.
I wanted to share the theraputic ranges that we have for Ella and her Azathioprine monitoring.
6TGN (235-450)
6-MMPN (<5700)

I know when Ella had 6-TG levels were 574 her Aza was stopped, she also had low neutrophils at the time so our situation was different.
Looking at your results they are higher than our reference ranges.
Do you have the range next to the result for your tests?
I hope I haven't confused you just wanted to help.
08-21-2013, 05:56 AM   #85
upsetmom
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Where does thioguanine come into it?
No idea.
Don't even know what it is.
08-21-2013, 05:59 AM   #86
upsetmom
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Do you have the range next to the result for your tests?
I've got no ranges.
The last results were higher.
08-21-2013, 05:59 AM   #87
Dexky
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It is a drug on its own but I'm guessing it is the 6TGN and is a metabolite of the Imuran?? I'm gonna see what Google says...
08-21-2013, 06:04 AM   #88
upsetmom
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I think it might be the 6TGN as l can't see it anywhere on the paper and l know it was tested.
08-21-2013, 06:12 AM   #89
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Might be an interesting read for those with celiac as it appears to have possibilities at very low doses.

It is used to treat childhood leukemia at high doses and apparently is quite dangerous. It is used on its own at low doses to treat IBD.
08-21-2013, 08:35 AM   #90
Catherine
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It written like this on mine

6 - thioguanine nucleotide ( 6-TGN). Reference range 235-450 pmol/8 x 10^8 RBCs
6- methylmercotpurine (6-MMP) reference range <5,700 pmol/8 x 10^8 RBCs
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