12-07-2016, 10:50 PM   #1
Join Date: Sep 2015
Location: Novi, Michigan
Traveling to India

We are planning for a month long vacation to India in February 2017. It's my only brother in law's wedding and my in-laws want us to be there.

My son is currently taking budesonide ( was on Remicade earlier this year, which failed.., so we had to stop it). He's doing so much better with budesonide. His weight has increased by 10 lbs in 3 months and fecal calprotection reduced from 1200 to 190.

I want my son to take 3mg budesonide as maintenance medicine when we go to India (he'll taper to 3mg, from next week. He's on 6mg now). Here are my reasons...please tell me if my thinking is valid..

1. He'll not be totally immuno suppressed and will be able to fight infections better at India.
2. My father-in-law has TB, so I dont want to risk taking him if he's on a biologic (Doctor wants us to start Humira and I have told him the same. He's kind of okay with it.., but not fully satisfied). Once, we are back.., we might start Humira.

It's really challenging to take a 10 year Crohn's kid and a then 4 month old infant to India

I'm already dreading going to India and not able to relax or sleep. But.., this is the right time to show my new born to all my relatives there. My Crohnie kid's health is better..., so thinking of taking the risk.
Any suggestions on to what precautions should I take?
12-07-2016, 11:05 PM   #2
my little penguin
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Budesonide is a steroid
And steroid suppress the immune system
So infection is still a risk
Exposure to TB could put him at risk to not be able to get humira when you get back
Latest TB is a big risk
Ds has to be tested annually for it while on biologics
DS - -Crohn's -Stelara -mtx
12-07-2016, 11:11 PM   #3
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I posted on your other thread:

If it's a short time, Budesonide should be no big deal.

But we have actually taken Humira to India (many times!). We take it on the flight in a cooler with an ice pack. Security doesn't give us any trouble as long as we tell them it's a medication (and we have letters from the girls' doctors). It stays cold through the flight and it's no big deal at all to carry.

I was always worried about the girls getting infections in India, especially on meds like Humira + MTX or Remicade + MTX, but both girls have been absolutely fine. We are careful about eating out and water, but we don't do anything special.
Wanted to add that besides being checked for TB when they get back, we don't do anything special. I do encourage the girls to avoid crowded areas and we don't travel much within India, but besides that we really do not do anything special.

But...since your FIL has TB, I would ask the doctor. And by that I mean an infectious diseases specialist and not just his GI. We have been referred to infectious disease more than once.

I would worry about TB if your father-in-law has it even on just a steroid. Steroids also suppress the immune system - arguably more than biologics. For example, my daughter had surgery in October and her surgeon was very concerned that she was on Entocort (6 mg) but not at all concerned that she was on Imuran and Cosentyx. He wanted her off steroids before he did anything.
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
12-08-2016, 08:55 AM   #4
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Personally, I would love to see India! But, I would be very wary about taking my crohns kid there, especially with TB exposure. I would also be extremely cautious about what you eat while there...
Son diagnosed with Crohn's March 2013, at age 8
12-08-2016, 03:55 PM   #5
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I just wanted to add that my son was on budesonide and when he tried to wean it to 3 mg (from 6), his symptoms recurred.
12-09-2016, 09:45 AM   #6
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Location: North Central, Illinois

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Does your father in law have active TB or has he been treated and no longer active. I don't think any of you should go if he has active TB.
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.
12-09-2016, 01:21 PM   #7
Join Date: Sep 2015
Location: Novi, Michigan
Thanks a lot for your responses. My father in law has non pulmonary tb, so the risk is very less. Non pulmonary tb isn't contagious.
Maya142: May I ask to which part of India you go to? Sorry. .if it's too personal. We would be staying in Karnataka.
I'm really confused as to what we should do. ...

12-09-2016, 01:30 PM   #8
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I'll PM you.
12-09-2016, 01:31 PM   #9
Join Date: Sep 2015
Location: Novi, Michigan
I'll PM you.
Thank you

03-21-2017, 10:58 PM   #10
Join Date: Sep 2015
Location: Novi, Michigan
Thank you all. We had a great trip. My Crohnie kid did very well and we didn't have any problems. Knock on wood. He liked India and got so much love from his extended family that. ..he says. .he wants to relocate to India.
03-21-2017, 11:08 PM   #11
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Location: Portland, Oregon

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That's great news! Glad the trip went well, and thanks for the update.
Daughter E (15) 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
03-21-2017, 11:11 PM   #12
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Glad it went well!! Will he be starting Humira soon? Hope he is still feeling well.
03-22-2017, 08:35 AM   #13
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Delighted the trip went well
03-29-2017, 04:30 AM   #14
Join Date: Sep 2015
Location: Novi, Michigan
Thank you all..he is getting his regular blood work. Doctor wants to check for TB before starting Humira.
We are discussing whether to go for Humira or Imuran. He was on Remicade and it did nothing for him (he got a bunch of infections and was always sick). Also...my gut says...let him try Imuran.
Once the blood work is back, we meet thedoctor for the medication plan.

My son is doing good on the outside. He has energy, eats well, putting on weight and Crohn''s symptoms isn't bothering him. But. .he isn't increasing his height and fecal calprotectin is high ( about 400). Doctor isn't very concerned about his fecal calprotectin. He is the shortest at school ( in his grade). Doctor says. .my son is young and he'll catch up his height.
03-29-2017, 09:14 AM   #15
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Location: Michigan

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I'm glad it went well.

Grace did best on Imran but it was with Remicade.
She tried other combos but that had been the best.
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,
03-29-2017, 11:08 AM   #16
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It's worth trying. But know that in terms of immunosuppressants, Imuran is actually more likely to cause infections. My daughter was on it last year - she was taken off it because she got so many infections (including staph. and CDiff - about 8 infections that required antibiotics).

Her GI said it was much more likely to cause infections than her biologic.

Sure enough, no infections at all since she was taken off Imuran. She is still on her biologic.

Imuran also comes with slightly higher cancer risks, so many GIs are beginning to use Methotrexate in place of it. I'd also ask about MTX and see if that is an option for your son.

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