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08-31-2016, 09:37 AM   #1
pcsg560
 
Join Date: Aug 2016
Well Imuran it is!

So our little 5 year old lasted for 18 months on Pentasa for her UC (pancolitis). She has been mildly flaring for the last 6-8 weeks with very few symptoms and low inflammation markers. We increased Pentasa and it worked for about a week or two and Monday we had to take her in for massive amounts of bloody diarrhea and pain. Her inflammation sky rocketed. We are on oral prednisone for the first time. We are on day 3 and she feels so much better. As a matter of fact, we may have to give her some Miralax because she hasn't gone since she started the prednisone. Her doc ran some labs to check certain things and will start the Imuran as soon as those come back in the next week. So we are looking at starting on it some time next week. We are on 30 days of pred and then will taper off. Her taper will be done 2 days before we leave for Disney. I am going to ask him for a script for it to take with us on vacation because I am so worried she will flare while we are there. Are there any special precautions we should take on Imuran for germs? I am a germaphobe already and am so panicked about her catching something.
08-31-2016, 11:14 AM   #2
mom5272
 
Join Date: Aug 2010
Location: Virginia
Good idea on the extra script. I like to always have that stuff on hand. I've been on 6mp for 15 plus years and have not had any issues with germs and I touch everything. My only issue I am having is skin issues due to the suppressed immune system long term. Good luck. I can't imagine a child going through this.
08-31-2016, 11:21 AM   #3
my little penguin
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Join Date: Apr 2012

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Ds was age 7 when he was dx and placed on 6-mp
So second grade ...
Only washed his hands
No issues
Immunosuppressants do NOT make you more likely to catch the common cold or the normal school crude
It does make them more susceptible to opportunistic infections like tag a longs woth the flu such as pneumonia

So just wash hands
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DS - -Crohn's -Stelara
08-31-2016, 11:23 AM   #4
pcsg560
 
Join Date: Aug 2016
Ds was age 7 when he was dx and placed on 6-mp
So second grade ...
Only washed his hands
No issues
Immunosuppressants do NOT make you more likely to catch the common cold or the normal school crude
It does make them more susceptible to opportunistic infections like tag a longs woth the flu such as pneumonia

So just wash hands
Thats great to know! She will get a flu shot as soon as she is finished with the steroids.
08-31-2016, 11:35 AM   #5
my little penguin
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Join Date: Apr 2012

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Flu shot
I believe you need to wait 2-3 weeks after steriods before you can get the shot so it's actually effective - please check with your Gi
Also only the actually shot
The mist can't be given if they are on immunosuppressants or biologics
08-31-2016, 12:00 PM   #6
Maya142
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My daughter is on Imuran and a biologic. We don't do anything except have her wash her hands frequently.

She does try to stay away from her friends with they're visibly sick (coughing/sneezing) but it doesn't always work. Plus, at any time, half the class is sick at school, so really nothing we can do.

But anyway, we haven't had any weird infections. She only gets one cold a year or so, which was exactly how she was prior to Imuran.

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
08-31-2016, 02:51 PM   #7
Farmwife
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Hi my 7 year old is on Imran and doing well with it. No side effects.She also is on Remicade.
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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
08-31-2016, 06:58 PM   #8
EmilyTheCrohnie
 
Join Date: Aug 2016
Location: Wichita, Kansas
I think the extra script is a good idea as well. I was recently on Prednisone for months and had a horrible withdraw from it after coming off of it. That would be no fun at Disney. I would think it would be better to talk to her doc about staying on it until after Disney. Even if you have to pack the pill container and choke down the nasty tasting pill on vacation!
Good luck, things will definitely get better!(:
08-31-2016, 07:13 PM   #9
pcsg560
 
Join Date: Aug 2016
I think the extra script is a good idea as well. I was recently on Prednisone for months and had a horrible withdraw from it after coming off of it. That would be no fun at Disney. I would think it would be better to talk to her doc about staying on it until after Disney. Even if you have to pack the pill container and choke down the nasty tasting pill on vacation!
Good luck, things will definitely get better!(:
Thanks! I thought about that. She will actually be tapered so hopefully we would have some symptoms before she comes completely off before we leave. I am considering talking to him about staying on it at Disney. She actually LOVES taking the steroids. Its a liquid because she is only 5 and can't swallow a pill. I don't give her any sugar and its cherry flavored and sweet so she thinks its a treat. Good ideas! Thanks so much!
08-31-2016, 07:17 PM   #10
EmilyTheCrohnie
 
Join Date: Aug 2016
Location: Wichita, Kansas
As long as the taper is given enough time, she should be just fine! I wish the pills tasted better! I'm glad it's not a hassle for her to take it.


08-31-2016, 07:36 PM   #11
Maya142
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My kiddo was once allowed to stay on a low dose of Prednisone for an extra two weeks for sleepaway camp. We didn't want to change anything before she went to camp -- it worked well and she had a great time. It's worth asking about.

Does she get tired easily or is she able to walk a lot? There is a lot of walking at Disney. We had to rent a wheelchair.
09-01-2016, 03:53 PM   #12
Mehita
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Location: Minnesota

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Great advice so far. The only thing I would add is if you're flying, wipe down as much as you can before she gets in her seat. Airplanes are so yucky!
__________________
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
09-01-2016, 04:20 PM   #13
pcsg560
 
Join Date: Aug 2016
My kiddo was once allowed to stay on a low dose of Prednisone for an extra two weeks for sleepaway camp. We didn't want to change anything before she went to camp -- it worked well and she had a great time. It's worth asking about.

Does she get tired easily or is she able to walk a lot? There is a lot of walking at Disney. We had to rent a wheelchair.
Oh I will certainly ask about that. She is a 30 lb 5 year old so she is still in a stroller. She mostly likes to walk though. She is a spunky energetic kid, even in the flare. We go to Disney often. I am a travel agent, so this will be her 5th time. Its our favorite place.

Her taper will be over a month. She is on 15mg daily for 30 days and then will be tapered down over the next 30 days but I will ask if he will leave her on them for the extra week. Great idea!
09-01-2016, 04:43 PM   #14
pcsg560
 
Join Date: Aug 2016
As long as the taper is given enough time, she should be just fine! I wish the pills tasted better! I'm glad it's not a hassle for her to take it.
She will be on it for a month and then taper for a month.
09-01-2016, 04:44 PM   #15
pcsg560
 
Join Date: Aug 2016
Great advice so far. The only thing I would add is if you're flying, wipe down as much as you can before she gets in her seat. Airplanes are so yucky!
We are driving. Its much easier to drive the 11 hours and have our car to pack her food and meds in a cooler.
09-09-2016, 08:32 AM   #16
Catherine
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Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

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My daughter is on high dose imuran. She actually has less illness on imuran that off.
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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)
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