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02-27-2013, 10:20 PM   #1
upsetmom
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GI visit

We saw the GI today. A lot of things in the blood test were wrong.
Her ESR and CRP were still climbing since the last test. Her iron levels were low. There were a few more things wrong but i can't remember exactly what.

Shes on Pentasa at the moment and now we are adding Imuran and flagyl .
Does this combination sound right ...to me it seems like too many tablets...

We discussed puberty and the DR thinks she wont get her periods or start developing till we get this disease under control.

I don't like the thought of giving her so many tablets......but hopefully they work.
02-27-2013, 10:28 PM   #2
Devynnsmom
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(((((((hugs))))) I'm sorry the appt wasn't better.
I don't know about the combination. I'm sure somebody will though.
I don't like giving Devynn pills either
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Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
02-27-2013, 10:30 PM   #3
my little penguin
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At one point ds was on 6-mp , allopurinol, asacol, Prevacid, and Zyrtec as far as pills.

We ave found over the years different drugs do different things so as long as the doc is aware of all the different drugs and the pharmacist
Then your ok .

Hope it helps
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02-27-2013, 10:37 PM   #4
Jmrogers4
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Jack was on Apriso and Imuran. Apriso is same class of drugs as Pentasa 5-ASA and no issues with him.
Hope the combo gets it all under control and she is developing as she should soon
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
02-28-2013, 12:16 AM   #5
Catherine
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Upsetmom

The most important thing is they do the TPMT test before starting AZA and the do regular bloods tests at the start. Sarah had weekly blood tests at the beginning.
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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)

Last edited by Catherine; 02-28-2013 at 12:20 AM. Reason: correct test name
02-28-2013, 12:22 AM   #6
upsetmom
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What is a TPMT test? ....no one mentioned anything ...i'm supposed to give her her 1st tablet tonight
02-28-2013, 12:25 AM   #7
upsetmom
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It's ok i just saw it
02-28-2013, 12:29 AM   #8
Catherine
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Click on the highlighted word to my previous post. Sarah didnot have the test until after starting aza either as it was not ordered.

Please don't be overly concerned, I don't think it standard practice to order it Australia but it is available, and there is a small group of people who shouldn't take aza.

Sarah has now had this test. Were you given forms for blood tests?

I have also sent you a PM as I am not to disclose private information (as per Sarah) on here anymore. As people we know can see what we post.
02-28-2013, 12:40 AM   #9
upsetmom
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Thanks Catherine

This was never mentioned to us.

We do have the forms for blood tests
Weekly for 2 weeks..... then every 2 weeks .....then monthly
02-28-2013, 12:44 AM   #10
Catherine
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That sound like to the same schedule to blood tests we had.
02-28-2013, 04:40 PM   #11
Sascot
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Good luck with the new tablets, hope they work soon. My son is on 6mp and we have been told if his fistula flares up then he has to take Flagyl asap.
02-28-2013, 04:46 PM   #12
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Good luck with the new tablets. Hope that combination works for her.

xx
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02-28-2013, 09:53 PM   #13
upsetmom
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Thanks everyone.

Last night she was terrified to take her tablets because they warned us that they might cause nausea....she eventually took them right before bed..This morning she had a sore throat but apart from that she was good.
Her inflammatory markers have never gone down so i hope these meds work.
02-28-2013, 09:57 PM   #14
Jmrogers4
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Hope they work for her as well. Sending lots of prayers and feel good vibes her way.
02-28-2013, 10:38 PM   #15
my little penguin
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Good luck
Remember they can take 4 months to work minimum
03-02-2013, 04:44 AM   #16
DustyKat
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Hi upsetmom,

The combination of meds is not unusual but in view of your daughters continued rise in inflammatory markers I thought they may pull Pred in to hit it hard and fast.

As mlp said, Imuran will take at least 3 months to become fully therapeutic so it vital to have the faster acting meds kick butt in the meantime. The Pentasa is an anti-inflammatory and the Flagyl should treat any infection that is present due to inflammation breaching the mucosa and it is also thought to have anti-inflammatory properties.

Chronic inflammation can and does delay puberty but once remission is achieved the process will begin in earnest!

Good luck Mum, I hope the meds do the trick for your girl.

Dusty. xxx
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03-03-2013, 04:50 AM   #17
upsetmom
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Just an update

Nausea and fatigue started straight after the first tablet...today lots of vomiting couldn't keep anything down....We saw the GP and he gave her nausea tablets...shes now feeling a bit better....Dusty suggested we try giving it with food (Thank you Dusty.. )....Hopefully that helps.
03-03-2013, 03:36 PM   #18
Sascot
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Glad the nausea meds are helping. Have to say I always give my son his 6mp about 15 minutes after dinner (I wanted it to be the biggest meal of the day). So far no nausea thankfully.
03-04-2013, 12:10 AM   #19
DustyKat
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How did your daughter go last night/today?

Dusty.
03-04-2013, 12:15 AM   #20
upsetmom
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She woke and was ready to be sick so she took the nausea tablets...i tried to phone the nurse but she wasn't working today.

I might try giving it to her after dinner like sascot does.
03-04-2013, 05:56 AM   #21
DustyKat
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Good luck! I hope it does the trick!

Dusty.
03-12-2013, 03:38 AM   #22
upsetmom
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I thought i'd give an update.

After a feeling sick from the imuran things have finally settled down. Now on Thursday shes going from 50mg to 125mg.....I'm just wondering will the side effects come back on a higher dose.
03-12-2013, 04:51 AM   #23
Mylittlesunshine
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Hope everything goes well when u increase
The imran dose. Hugs
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03-12-2013, 05:11 AM   #24
Dexky
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I thought i'd give an update.

After a feeling sick from the imuran things have finally settled down. Now on Thursday shes going from 50mg to 125mg.....I'm just wondering will the side effects come back on a higher dose.
When my son was on 6mp, it started at 50mg and stayed there. I would think the build-up to 125mg on Imuran is intended to allow the body to adjust with less side effects. I hope so! Good luck!
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03-13-2013, 02:07 AM   #25
CarolinAlaska
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I hope it goes well. Let us know!
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
03-19-2013, 03:13 AM   #26
upsetmom
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Well things have been going down hill since starting 125mg..i don't know if its from the imuran it might just be a coincidence.

My daughters fingers have been peeling and its spreading. Today she has a red itchy rash on her thighs, the skin in her mouth looks like its peeling, her lips are very dry and her feet have also started peeling. She still has nausea. Our GP said it's an allergic reaction. He suggested i speak with the nurse and see if they can lower the imuran as all these problems started when she started 125mg.

She was going to get a blood test for streptococcus tomorrow but after i sent the nurse an e-mail with the photos from the rash on her thighs she rang me and they want to see her tomorrow...A dermatologist will see her as well.

I just hope this is all caused by the imuran....and not another problem.
03-19-2013, 03:16 AM   #27
Catherine
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Glad they are seeing her tomarrow.
03-19-2013, 03:23 AM   #28
Sascot
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Poor girl!! It definitely sounds like an allergic reaction to the Imuran. That's really good they are seeing her so soon.
03-19-2013, 09:20 AM   #29
Devynnsmom
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That sounds awful I hope you get answers soon!
03-19-2013, 09:41 AM   #30
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I'm glad you're seeing GI and dermatologist tomorrow! Hope they can give you an easy solution!
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May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
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