04-13-2013, 03:25 PM   #1
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Mylittlesunshine's Avatar
Join Date: Dec 2012

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Maintance meds

Hi everyone

Just a quick thread, Lucy has mickey button
Fitted next week , then will be discussing
Maintance meds, I'm scared of giving her
These big scary meds .
So my question is WHAT MAINTANCE MED
Any advise would be great
Currently on EN
Neacate LCP
Calcium sandos
Inhalers x3
Pred tapering
04-13-2013, 03:43 PM   #2
my little penguin
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Join Date: Apr 2012

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Within 1 year

DS started with Pentasa ( lasted 1 month) - did NOTHING- he just got worse
EEN + 6-MP (3 months last)
Add allopurinol due to liver stuff ( Lasted 3month)
added pred( 2 months course) + ASacol
FInally moved to MTX and Pred 9 mths after dx for 8 weeks + ASacol
Finally remicade after almost 1 year ( lasted 9 months) + Asacol

Now Humira(starting May) + Asacol + peptamen jr
DS - -Crohn's -Stelara -mtx
04-13-2013, 04:08 PM   #3
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Location: Minnesota

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DS has only been on Pentasa. I don't think it does much. Switching to 6MP or Remicade in June.
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013

Last edited by Mehita; 07-20-2013 at 11:31 PM.
04-13-2013, 04:18 PM   #4
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Join Date: Mar 2011
Location: North East Coast - USA

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Alex has been on Pentasa for 3 years now 3500 mg/day. We just switched (last week) to Lialda (suppose to be the same med, but in less pills - before 7 pills a day, now 3 pills a day).

Mom of Champ (Alex)
Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
Priesthood Blessings
04-13-2013, 05:18 PM   #5
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upsetmom's Avatar
Join Date: May 2012
Location: New South Wales, Australia

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My daughter started on sulfasalazine and was ok for a few weeks and then started to get diarrhea.
Next was salofalk which caused diarrhea as well.
Then was Pentasa which hasn't been enough to get the inflammation down so they recently added imuran, they said she could probably come off the Pentasa in about a year.
Daughter dx CD March2012...
(aged 14)

Currently on:
125mg Imuran

Dx Premature Ovarian Failure 2014

04-13-2013, 06:48 PM   #6
Tesscorm's Avatar
Join Date: Jun 2011
Location: Ontario

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My son was on supplemental EN for 1.5 years. Kept him in clinical remission (no symptoms) and kept the inflammation from spreading but did not eliminate all the inflammation. He just started on remicade in Feb.
Tess, mom to S
Diagnosed May 2011

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
04-13-2013, 08:09 PM   #7
Jmrogers4's Avatar
started on 50mg of Imuran kept upping dose until we reached 150mg/day and still was not at theraputic levels. no growth/weight gain
Tried Methotrexate developed bronchitis/lung issues. Skin on hands dried and cracked and bled. gained 5 lbs grew 1/2 inch
Back to Imuran 75mg and added allipurinol 100mg was on this combo for 2 years still had joint pain, eczema and stomach pains but far less than previous. no weight gain/growth
LDN now in 10th month - labs normal, scopes normal, no joint pain, no eczema, no stomach pains, normal bowl movements. 1-8 months - no weight gain/growth 1"; 8-10 month with addition of supplemental EN 20 lb weight gain/ growth 1"

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

Husband dx Crohn's 3/1993
currently none due to liver issues
04-13-2013, 08:41 PM   #8
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Join Date: Feb 2012
Location: Canada

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Started on azathioprine (Imuran) in Feb. 2012 and have stayed on it. He seems mostly better although he still has the odd bad day here and there. Azathioprine takes a long time to become effective (3 months or more). I understand not wanting to add the big scary drugs but once you take the plunge it doesn't seem so bad.
Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.

Last edited by Twiggy930; 04-13-2013 at 10:49 PM. Reason: typo
04-13-2013, 09:02 PM   #9
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Join Date: Jan 2013
Location: North Central, Illinois

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We started 6MP and it is going well. I agree with those who say that once you start, it isn't so bad. Jae has not side effects of it other than it lowering her white count (which is part of the reason she takes it...), so far. It is one pill a day.
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
04-13-2013, 09:42 PM   #10
AZMOM's Avatar
Join Date: Nov 2010

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We started with 6MP

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
04-13-2013, 10:37 PM   #11
S mom
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Join Date: Jan 2012
Location: Ontario

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We did EEN and started methotrexate at first. It worked for almost a year but then stopped so now we've added Humira too. It's really scary when you read all the possible side effects but it actually was just as scary watching him in pain, losing weight and looking sicker and sicker. Humira has quickly made a huge difference for him overall - so an acceptable risk, I guess.
04-14-2013, 02:22 AM   #12
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Join Date: Apr 2012
Location: Michigan

My Support Groups:
Grace thus far.................
EEN and Pred

Grace's future (we hope).........
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
04-14-2013, 03:36 AM   #13
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Sascot's Avatar
Join Date: Aug 2011
Location: Falkirk, United Kingdom

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Hi, good luck with the mickey button placement next week.
Andrew had the EN first, failed Aza and is now on 6mp. So far so good with tiredness being the main issue unresolved (but I do keep forgetting to give him his iron )
04-14-2013, 05:07 AM   #14
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Ands's Avatar
Join Date: Aug 2012
Location: Somerset, UK

My Support Groups:
Joseph was the same as Sascot's son Andrew, it must be a UK thing!!!!!!!

We are 9 months since diagnoses.

Best of luck.

.................................................. .............................
Son Joseph diagnosed July 2012 (aged 10)
Crohn's: oesophageal, ileal, oral and perianal disease
6 week exclusive modulen
8 weeks predisolone
2 weeks azathioprine - stopped after reaction
6-MP 50mg - stopped June 2014 (after 18 months)
Currently on:
Sennoside 18ml daily
Multi Vitamin
Omeprazole 10mg
Prochlorperazine 2 x 5mg
Predisolone as a mouth-wash (as and when needed)
04-14-2013, 08:54 AM   #15
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Location: west coast scotland., United Kingdom

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We started with salofalk then introduced 6mp. Has been on both since diagnosed 3 years ago and currently doing fine. xx
04-15-2013, 05:11 AM   #16
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Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

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Sarah takes aza, no side effects 14 months on this treatment.
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)
04-15-2013, 08:18 AM   #17
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Join Date: Dec 2010
Location: Kansas

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We started with sulfasalazine.
At age 10 we quickly went thru meds. Started with Prednisone, azathioprine, and pentasa. After few rounds of pred...he kept getting worse. Went to Remicade and pentasa. Then to Humira (bi weekly) and Pentasa. Now we're on Humira (10 days) and Methotrexate (orally) and Rowasa enemas. Waiting to see if that works
Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
04-19-2013, 04:55 AM   #18
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DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
Both kids started with and have continued with Imuran.

04-19-2013, 05:37 AM   #19
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Location: Tipperary, Ireland

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Started low key on flagyll and cirpro, saw an improvement for a few weeks, then started prednisone and 6 mp prednisone worked well but once we started to taper symptoms returned. We then tried the 6mp in conjunction with flagyll for a few months again it worked for a while , then it was infliximab ( huge decision) and 6 mp - started off really well but not so great now. 6 mp is now stopped and we are due to replace it with methotrexate when it is flushed out in about six weeks, so it will be infliximab and methotrexate and we will see how it goes.

This is a really scary time mlp these drugs are heavy duty and the last thing you would want to give to your four year old but for us we felt we didn't have a choice - we have watched our baby in pain since she was 9 months old and at this stage I think we would try anything if we thought it would stop the pain. Having said that agreeing to give her those drugs was one of the hardest things we had to do but for now and for Lucy we think we made the right decision.

Your Lucy is very young also and our experience is that our GI did not give these drugs lightly and sought a second opinion in relation to infliximab so again we took comfort in the fact that he considered all options and consulted with other experts before making the decision to recommend infliximab. We also felt we were given enough information to make an informed decision. I suppose what I am saying is that we trust our GI and believe he is acting in Lucy's best interest at all times.


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