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


 
10-01-2015, 08:27 PM   #1
Farmwife
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Imuran... here we go!

I hope y'all are well. Fall is here and the farm is slowly returning to a bit of quiet for awhile. Well, until corn season.

Grace got her first set of cortisone injections in her knees at the kids hospital today.
Grace is having a minor system flare (GI, joints, bladder, skin, eyes).

Since Remicade, Mtx and sulfasalazine don't seem to be bringing lasting remission
the doc want to try Imuran.
The other thought was to move Remicade to every 2 weeks but decided against that for now.


So did the combo of Remicade and Imuran work for them?
Did it help if you/they had arthritis?
Side effects?

I'm nervous tonight because her ibd has been somewhat more controlled ( her JIA had been a nightmare) and I don't want it angered it.

Thanks for any advice!
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I'm mom to............... Little Farm Girl 9 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 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
Azathioprine
10-01-2015, 08:53 PM   #2
Maya142
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How did the injections go Farmwife? Was she sedated? M had one in her right knee and it worked like magic. She wasn't sedated but was much older than Grace - I think she was 13.

M had been on Remicade and Imuran and Sulfasalazine. She did ok but not so great. Sulfasalazine was not doing anything so we discontinued it within 3 months of starting that combination. She was on high dose Remicade (15-20mg/kg), every four weeks with the Imuran, and got better but just not good enough, so we had to switch to Simponi. Her IBD did pretty well on that combination but her joints were a real nightmare.

With Imuran, M had nausea for the first week or so and whenever we increased the dose but it settled pretty quickly. Besides that she was fine. No hair loss, blood work looked good (she did have to have weekly bloodwork for a while). The nice part about Imuran is that you can test the levels, and so when hers were found to be too low we were able to increase the dose (unfortunately it didn't help much).

Imuran apparently used to be used a lot for JIA and lupus but not so much anymore.

Good luck!! I hope it helps!
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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
10-01-2015, 09:08 PM   #3
Farmwife
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They wanted to fully sedate but I said let's try the laughing gas and she did great!
Doesn't remember it a bit but I will remember her telling me it was like floating in a bubble

So far the shots seem to be working. Other than the pains from the needles she hasn't mentioned pain. Tomorrow will be the true test.


What time a day did you give the med?
10-01-2015, 09:16 PM   #4
pdx
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That's great that she was able to get by with just the laughing gas. I really hope that the cortisone and Imuran work well for her!
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Daughter E (16) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (20 mg weekly)
vitamin D, folic acid, iron, 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, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
10-01-2015, 09:17 PM   #5
my little penguin
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Hope it helps
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10-01-2015, 09:23 PM   #6
Optimistic
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I feel like this is going to work for her. I hope I am right!
10-01-2015, 09:28 PM   #7
Maya142
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We did Imuran at night at first so she'd sleep through the nausea. When her dose was increased, we split the dose, 50mg in the morning and 50 mg at night.

Glad she did well with the laughing gas!! She's so brave! M's knee was sore from the needles for a day or two but then it did work like magic. She was told to take it easy for a day - they said she should minimize walking, as far as possible (I think she missed a day of school if I'm remembering correctly).

Fingers crossed both Imuran and the steroid shots work well!
10-02-2015, 09:19 AM   #8
FrozenGirl
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Imuran and Remi was a great combo for me. I don't have JIA but it did help my Crohns related joint pain.
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Dx: Ulcerative Colitis, Nov 2013
Currently on:
Mezavant 4.8g
Vitamin D 1000iu
Calcium
Tecta 40mg
Remicade: 600mg, every 4 weeks
Methotrexate: 15 mg (injection)
10-02-2015, 07:11 PM   #9
Farmwife
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We gave the new med and so far no side effects!

But the big new is..........
I gave Grace her last Mtx injection! Grace always handled the shot well and even at the end would inject herself but after 2 years of this it, it's great to be able to stop it!!!!ll
10-02-2015, 07:13 PM   #10
Maya142
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Glad you're done with MTX! M found Imuran much easier to tolerate than MTX. We used to give M Imuran at night after a snack.

Good luck!
10-03-2015, 09:13 PM   #11
Maya142
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Farmwife - just a thought - did the doctor ever consider Arava (Leflunomide) for Grace? It is used quite a lot for JIA. It wouldn't work for IBD but I'm assuming the Remicade is keeping her IBD under control. We found that it worked a LOT better for M's joints than Imuran.

Maybe something to keep in mind if Imuran does not work?
10-04-2015, 07:20 AM   #12
Farmwife
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Thanks, if this doesn't work I will be asking!
10-04-2015, 03:21 PM   #13
kimmidwife
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Prayers being sent that this is her miracle!!!!!!!
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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.
10-05-2015, 04:24 PM   #14
Sascot
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Hope the imuran works great so you don't have to worry about another med change
10-06-2015, 12:06 PM   #15
Jmrogers4
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Hope the Imuran combo works great to control both things
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Jacqui

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
10-27-2015, 06:35 PM   #16
Farmwife
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Rant ahead
I called to get a new longer scrip for Grace's Imuran.
The nurse said she call it in right away.
She called back later and said to drop her back to one pill not two like the bottle said.
I asked why and she said the dose was to high for her weight and have a nice day!

So............ why the mistake. You would think they ( doctors, pharmacy, Insurance...) would have checked for this.

I'm probably missing something but it still ticks me off!

On the bright side Grace's arthritis is doing well
but her tummy is starting to hurt more and more. Go figure
10-27-2015, 06:56 PM   #17
Maya142
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Glad her arthritis is doing better! That's wonderful!

Has she tried having Imuran after a snack? We were told it would be less likely to cause nausea/stomach issues if M had it after food. We ended up giving it to her at night, with a little snack. It worked well for us.

Good luck!
10-27-2015, 07:20 PM   #18
Lady Organic
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maybe the GI wants to start progressively with the Imuran, that would be common practice.
Imuran gave me mild nausea in the first weeks.
It is recommended to eat with Imuran to avoid stomach irritation my pharmacist told me, just as said above. This is different from sister drug 6-mp which should be taken on a empty stomach. I wonder why the difference since both meds are so similar...
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''UC-like Crohn's'' (2001)
wrists + ankles arthropathies (2013)
on: 50mg 6-MP (Purinethol)+ B12 shots


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 (pill, rectal), cortifoam, Imuran, Purinethol, methotrexate.
10-27-2015, 07:53 PM   #19
Farmwife
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Grace so far has no side effects that are obvious to me.
She takes it with dinner.

I guess it could be the new med, that's something to consider if her abdominal pain worsens.

How much Imuran does/did your kiddos take?

Grace is 50 lbs and on 50mg Imuran.
10-27-2015, 08:12 PM   #20
Maya142
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The dose of IBD is typically 2mg/kg- 2.5 mg/kg (and sometimes higher). M was around 40-41 kg (88-91 lbs) and was on 75mg of Imuran, a little less than 2mg/kg.

Her Imuran (6TGN I think?) levels were VERY low at that dose so we increased it to 100mg, making it like 2.4mg/kg. Her levels went up with the dose increased.

If Grace is 50 lbs, then her dose is a little over 2mg/kg of Imuran.
10-27-2015, 08:27 PM   #21
CarolinAlaska
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I'm glad they caught the mistake, and I'm glad her arthritis is improving.
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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.
10-27-2015, 09:04 PM   #22
Farmwife
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Thanks

Grace was told to take 2 a day.
So that would have put her a 100mg total.
Now she's back down to 1 pill at 50mg.
It will be ingesting to see if the pain comes back.
Of course
She gets a dose that works.......... and its to high.
10-27-2015, 09:09 PM   #23
Maya142
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Paging Catherine - I think her daughter was on a very high dose and it worked for her.

Imuran is hard on the liver though, and considering Grace is on other medications, they may not want to give her a very high dose of it.
10-27-2015, 09:30 PM   #24
Jmrogers4
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Jack was up to 150mg which is what the hubby takes and I was freaking out because how could a 200 pound man and 70-75 pound boy be on the same dose especially when it still wasn't at therapeutic levels for Jack. That's when we dropped it back to 50 and added alipurinol he ended up on 75mg of Imuran along side 150mg of alipurinol
10-28-2015, 05:39 AM   #25
Sascot
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Wow, awful when they make a mistake like that! Andrew is on 50mg a day and he is about 68kg
10-28-2015, 07:26 AM   #26
Catherine
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Yes, my daughter is on a higher dose 200mg at 58kg. She dose is 3.4 per kg, I haven't found any on a higher dose for IBD.

Her maximum dose per weight is 125mg. She dose has move up using test for Imuran levels. Her starting dose was 50mg at a weight of 44kg.
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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, 09:31 AM   #27
Farmwife
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Well guess what??????? Her legs pain came back with a vengeance last night.
So just one night with out the pill and she's already hurting. Her stomach was hurting also.


So is there any study on increased Imuran in children?
I don't want to risk her liver but her diseases out of control won't help either.
Thankfully her alt and ast levels are all normal and have never gone up with the higher dose of Remicade.
10-28-2015, 12:37 PM   #28
CarolinAlaska
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Oh no! I'm sorry she's hurting already.
10-28-2015, 12:51 PM   #29
my little penguin
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Typically the half life is 6 days
So unless you changed the dose 6 days ago
Shouldn't make a difference yet .
10-28-2015, 03:08 PM   #30
Catherine
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Have you had any blood tests since starting Imuran?
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Crohn's Disease Forum » Parents of Kids with IBD » Imuran... here we go!
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