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Crohn's Disease Forum » Parents of Kids with IBD » Imuran... here we go!


 
10-28-2015, 03:18 PM   #31
my little penguin
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http://www.ncbi.nlm.nih.gov/m/pubmed/15167634/
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10-28-2015, 03:25 PM   #32
Maya142
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I would also guess that the increased pain is a coincidence and not related to decreasing the dose. We weren't even allowed to test Imuran levels until she'd been on the drug for 6 weeks, so it probably does take a while for a change in dose to make a difference.

Good luck!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
10-28-2015, 04:25 PM   #33
Catherine
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Asking about the standard blood tests for Imuran not testing of levels.

Most GI do blood tests weekly or every two weeks for least the first six weeks after starting Imuran or increasing Imuran dose rate.
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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)
10-28-2015, 04:38 PM   #34
kimmidwife
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Sorry to hear hope you get it figured out quickly!
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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.
10-28-2015, 05:44 PM   #35
Farmwife
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Have you had any blood tests since starting Imuran?
2 weeks at her Remicade. Her levels were fine for her liver.
No mention for doing labs closer than 4 weeks at her infusions.
Her teacher told me that Grace had a lot of pain today and was nauseous most the morning.
I can't figure this out.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
10-28-2015, 09:29 PM   #36
Catherine
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2 weeks at her Remicade. Her levels were fine for her liver.
No mention for doing labs closer than 4 weeks at her infusions.
Her teacher told me that Grace had a lot of pain today and was nauseous most the morning.
I can't figure this out.
4 weeks is too long to wait for blood tests. Although Imuran can effect the liver at any time. The most common times are within the first six weeks or after an increase in dosage. They should be using the Imuran schedule for blood tests.

http://www.healio.com/gastroenterolo...-monitor-patie
10-28-2015, 09:47 PM   #37
Maya142
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We did weekly blood tests for a while, then every other week and then every month and then every two months and so on. I agree with Catherine, they should be testing more often.

Also, pancreatitis can be a side effect of Imuran. Extreme nausea, vomiting, abdominal pain can all be signs of it.
10-29-2015, 12:56 PM   #38
CrohnsKidMom
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My son tried Imuran when first diagnosed, but was only on it for a week or so as he couldn't tolerate it. I remember the bloodwork protocol was weekly testing for the first 6 to 8 weeks, then biweekly (I think for 2 months), then down to monthly for a bit, ending up at bimonthly. My son switched to MTX after that and bloodwork was done every 8 weeks, which is the same now that he's on Remicade. They really watch the liver numbers when someone starts Imuran.
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10-30-2015, 08:21 AM   #39
Farmwife
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THEY MESSED UP AGAIN!!!!!!!!!!!
I ( notice it says I) called last night a left a message asking about lab testing every week for this new drug!
The nurse called this morning and said, ya, she needs it tested every 2 weeks for the next 3 months!!!!!
I love this doc and he's nurses but they've messed up twice and it could have damaged Grace's liver.
Of course I'm being dramatic.... but I don't care.


Moral of the story parents,
Double check everything!!!!
10-30-2015, 10:03 AM   #40
pdx
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I'm glad that you called!
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
10-30-2015, 12:39 PM   #41
CarolinAlaska
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THEY MESSED UP AGAIN!!!!!!!!!!!
I ( notice it says I) called last night a left a message asking about lab testing every week for this new drug!
The nurse called this morning and said, ya, she needs it tested every 2 weeks for the next 3 months!!!!!
I love this doc and he's nurses but they've messed up twice and it could have damaged Grace's liver.
Of course I'm being dramatic.... but I don't care.


Moral of the story parents,
Double check everything!!!!
That is the beauty of this forum, isn't it! These docs are so swamped, stuff like this is becoming common...
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. 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.
10-30-2015, 01:00 PM   #42
kimmidwife
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That is really scary! Glad you are on top of it!
11-06-2015, 07:58 PM   #43
Farmwife
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Let's play.....
Out Guess the Doctors

2 weeks past Remicade and any ground gained has ben lost.
She's has pain in her stomach, abdominal, JOINTS, skin (toes are cracking again).

We have an emergency appointment set for Monday with her Rheumatologist and hopefully the GI.


We've maxed out Remicade and she's at full dose for Imuran.

Now I play the game

Options left.....
1-Up her back to the double dose of Imuran and/or push for an even high Remicade dose.
2-Switch to another med all together.
3-Put her back on EEN (not looking forward to that one)!!!! This might give the bowel rest long enough to help any simmering gut inflammation settle down.
4-Remicade Infusions every 2 weeks.

Wasn't there someone here that did a short course of Remicade AND Humira TOGETHER?

Any other options I'm not thinking about?
11-06-2015, 08:33 PM   #44
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im sorry to hear that.

iF EEN worked in the past, I'd go for that option. That would give a chance for Imuran to kick in, which can be a few months.
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
11-06-2015, 08:41 PM   #45
my little penguin
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Thinking een to buy time for Imuran as well
Plus there is amplified pain syndrome which is common in JIA kids
What PT is she doing ?
Swimming ? How many days a week?
Stretches daily ?
Any limits on diet ?
NSAID gel ?


My pint sometimes if you are not working all of the non med options it can increase psi significantly
11-06-2015, 08:52 PM   #46
Maya142
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We've done high dose Remicade. There's not a huge difference between doing high dose Remicade (15mg/kg to 20 mg/kg) every 4 weeks and doing regular dose Remicade (5mg/kg - 10 mg/kg) every two weeks.

For M, high dose Remicade didn't really do much more than regular Remicade. We did it every 4 weeks (once at 3.5 weeks). M did get better but not much - there were still BIG problems with her joints. Her Crohn's was mostly under control though on the high dose Remi though her FC was around 250.

Doubling Imuran is difficult because Imuran can be very hard on the liver. But you could try it.

We ended up switching M to Simponi which was a great decision. It has helped quite a bit. Her FC is now 26 (!!!) and her joints are doing better, though she does still struggle with pain. She currently doing a pain rehab program and is improving every day!

Since you've just added the Imuran, it's probably kind of early to switch.

I think your best bet is either EEN or Prednisone to give the Imuran time to kick in. The issue with EEN is that it may not work for her joints. If her joints are the worst, I'd ask for prednisone, but if it's her gut, then I'd do the EEN.
11-06-2015, 08:56 PM   #47
Farmwife
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She's in PT and OT, weekly. February is the soonest we could get her in for water therapy.
Stretches with her dad and will be doing cross country skiing and or ice skating soon.

If this is life then the docs need to tell us. We'll learn to live with it but if there's a chance of something more to help her, I'm willing to consider the possibility!
11-06-2015, 08:58 PM   #48
Maya142
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Wanted to clarify - M has amplified pain syndrome. It is VERY common is JIA kids I believe. You need to make sure the pain in her joints is from inflammation and it is not just chronic pain before changing her meds.

This was very difficult to do for M because her inflammatory markers aren't ever raised. We ended up having to do MRI's of her very painful joints (it was like 8 MRI's). Most of her MRI's looked better than before and she was in a lot more pain than she should have been for the amount of inflammation that was visible in most of her joints. Once we got those results, her rheumatologist and pain management doctors (both locally and at Boston Children's) diagnosed her with pain amplification.

Medications like Lyrica and Gabapentin are used to treat pain amplification as well as a lot of PT and OT. If all else fails, pediatric pain rehabs are recommended.

M is doing GREAT now at the pain rehab program. She has only been here 4 days and her sleep issues have gotten MUCH better.
11-06-2015, 08:59 PM   #49
Maya142
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Is Grace allowed NSAIDs? They make a BIG difference for M - she can't manage without them. In her case since the IBD isn't quite as bad as her AS, she is allowed to use them.

We had to try like 12 NSAIDs before we found one that worked and didn't upset her stomach. She used Mobic for a long time and is now on Relafen.
11-06-2015, 09:03 PM   #50
Maya142
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One more thing - there are completely different biologics that are options for kids with JIA. These are Orencia (T cell inhibitor or something like that) and Actemra (IL-6 inhibitor). The issue is that they probably wouldn't work for the IBD, so you'd need something else (Imuran, MTX) for the IBD.

I have heard of one kid who was on BOTH Humira and Actemra. You can't be on Humira and Remicade because they suppress the same part of the immune system (TNF) but since Actemra and Humira suppress different parts, they are used together (very rarely). The kiddo we met went to BCH and was only on Actemra and Humira for a short time.
11-07-2015, 01:50 AM   #51
Catherine
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Increasing imuran maybe an option but you would need test levels first.

It may be too too soon to increase yet.

With Sarah we increase by 25mg at a time over a period of approximately two years. 7 increase in dose in all.
11-07-2015, 05:12 AM   #52
CarolinAlaska
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Poor farmgirl and farmwife. I'm sorry she is suffering so. Not fair! Foul! I'm praying for her.
11-07-2015, 07:50 AM   #53
CrohnsKidMom
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Poor child! I'm praying too-that a solution is found, for her pain, and for your stress level!
11-07-2015, 11:41 AM   #54
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So sorry to hear that! I have no experience of other meds so no advice, sorry.
11-17-2015, 04:52 PM   #55
Farmwife
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Tomorrow is another big conference with the rheumatologist. Here's what I know so far from them,
* see my questions below*

1- The believe the Imuran should have worked by now. *

2- Remicade is losing its effectiveness. *

*1- How long did it take for Imuran to kick in for your kid? I just feel that it's too early to tell.
*2- So if Remicade can lose " effectiveness" does that mean the body can build up resistance against the drug?

Now just thinking out loud.........

If it's still working for a week or two after infusion, is it still worth fighting to keep the Remicade?
Also, if her intestines are not absorbing properly; wouldn't that mean her pills are not absorbing either?????
11-17-2015, 04:58 PM   #56
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Not sure about the absorbing. It took us a long time past the time when it should have been effective to even get the dosing right so in all it was about a year before we saw effectiveness from Imuran only to find out a couple of years later that it was probably not ever as effective as we thought.
Have they tested therapeutic levels for Imuran if so I would think at least 12 weeks to see if it was going to make any difference.
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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
11-17-2015, 05:27 PM   #57
Maya142
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I would also have them test Imuran levels. How long has she been on the right dose? It took months before Imuran was effective for M's IBD, we never saw a difference in the arthritis with it, unfortunately.

You could try high dose Remicade (15mg/kg-20mg/kg) or regular Remicade (5-10mg/kg) every two weeks. We thought it was worth a try for M, and the high dose Remicade worked a bit for her, it just didn't do enough.

Her other options are Simponi and Cimzia if they want to treat both the JIA and IBD with the biologic. Stelara but I've never heard of it being used on a kiddo Grace's age.

If they think the Imuran will control the IBD by itself, then you could try other biologics that don't work for IBD but do work for JIA and are approved for JIA: Orencia and Actemra. Kineret also may be an option.

M has never tried these but we have met other kiddos with JIA who are doing well on them. None of them had IBD too though.

I would test Imuran levels and give it some more time. And maybe try high dose Remicade, depending on the levels.

Good luck - thinking of you both!!
11-17-2015, 07:20 PM   #58
Farmwife
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Oct. 1st was the first time.
So 4 plus weeks isn't long enough. I'll make sure to ask about the testing tomorrow.


Is there anyway to monitor the joints other than an x-ray?
11-17-2015, 07:36 PM   #59
my little penguin
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Took ds 5 months to get to therapeutic levels for 6 mp
4 weeks is not long enough at all
11-17-2015, 09:48 PM   #60
Lady Organic
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ultrasounds for joints. Some rhuemies have ultrasound machines in their office and can operate it. my rhuemy does it and has such a machine. US is no longer reserved to radiologists. ER doctors use them. Ultrasound is a tool that is being increasingly though and used in different specialities now. They are also studying its efficacy for cronh's disease for easier and faster diagnosis, they call it Surface abdominal US I think, and so far its promising, especially for small bowel. so eventually GI will prolly have ultrasound machines in their offices too.
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