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Ulcerative colitis: experience in children with Azathrioprine or infliximab (intravenous)

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Ulcerative Colitis
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Posted 1/5/2018 9:41 AM (GMT 0)
My niece is suffering from severe ulcerative colitis since more than eight months now, and despite the doctors having tried several medicines (including steroids), nothing quite seems to work to prevent the regular flare-ups.

Now, the doctors have come to the conclusion of soon beginning with the either of Azathrioprine or infliximab (intravenous). Both have serious side-effects, so the hesitation of my sister and her fears are fully justified. She´s really under severe stress due to the mention of these two medicines.

My question is, does anyone of you have an experience of either of these medicines, especially in your children?

I thank you all in advance!
Posted 1/5/2018 1:49 PM (GMT 0)
Hi romeo ! I am abhimanyu staying in India and I am also a 17 yr old boy having ulcerative colitis for the past 8 months(april,2017)
For the past few months I have changed 4 doctors and was on steroids for 2 sessions. After short term remission my doctor advised me azathrioprine and I seriously dont notice any side effects. Currently, I am again getting towards the flareup side because of my stress towards exams. My advice to you is to be strict with your niece towards diet . Dont let her eat outside or eat her raw fruits n veggies. And also give a try to SCD diet. It may help . My parents arnt strict aboit my diet and feel like SCD diet is of no use and I hate this thing the most. If you want her to be perfectly fine just motivate her and keep a check on her diet.If you cant ask her everything you can ask me because I will be able to answer each n every question of yours without hesitation.
Posted 1/5/2018 2:33 PM (GMT 0)
I have been on 6mp (a sister medication to Azathioprine) since 2013, and I have yet to have a side effect from it. I have been on infliximab/remicade since 2013 and I have yet to have a side effect from it. However, those medications have given me a remission, a total absence of UC symptoms.

I was worried too when first starting those medication, but what helped me was looking at the actual risks versus the benefits. Scary when you initially read the possible side effects, we assume the worstcase scenario and that we'll experience them all. Side effects are rare on Aza/Infliximab, and most never experience them. The benefits far out weigh the risks of these medicaitons. If you want to take a deeper dive into the risks versus benefits here is a good read/watch from the Crohn's and Colitis Foundation of America with statistics:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

The bottom line is children will have UC as a part of their lives for a long time, you want to control their UC with appropriate medications that put their UC into a remission for the longest time possible, have the shortest and mildest flares possible, and the best quality of life. It's very difficult for them to enjoy childhood when they're flaring and sick all of the time due to horrible UC symptoms.

I'd go on the Infliximab/remicade. It's fast working, and has worked well for me.
Posted 1/10/2018 5:28 PM (GMT 0)

iPoop said...
I have been on 6mp (a sister medication to Azathioprine) since 2013, and I have yet to have a side effect from it. I have been on infliximab/remicade since 2013 and I have yet to have a side effect from it. However, those medications have given me a remission, a total absence of UC symptoms.

I was worried too when first starting those medication, but what helped me was looking at the actual risks versus the benefits. Scary when you initially read the possible side effects, we assume the worstcase scenario and that we'll experience them all. Side effects are rare on Aza/Infliximab, and most never experience them. The benefits far out weigh the risks of these medicaitons. If you want to take a deeper dive into the risks versus benefits here is a good read/watch from the Crohn's and Colitis Foundation of America with statistics:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

The bottom line is children will have UC as a part of their lives for a long time, you want to control their UC with appropriate medications that put their UC into a remission for the longest time possible, have the shortest and mildest flares possible, and the best quality of life. It's very difficult for them to enjoy childhood when they're flaring and sick all of the time due to horrible UC symptoms.

I'd go on the Infliximab/remicade. It's fast working, and has worked well for me.


Goodboy874565 said...
Hi romeo ! I am abhimanyu staying in India and I am also a 17 yr old boy having ulcerative colitis for the past 8 months(april,2017)
For the past few months I have changed 4 doctors and was on steroids for 2 sessions. After short term remission my doctor advised me azathrioprine and I seriously dont notice any side effects. Currently, I am again getting towards the flareup side because of my stress towards exams. My advice to you is to be strict with your niece towards diet . Dont let her eat outside or eat her raw fruits n veggies. And also give a try to SCD diet. It may help . My parents arnt strict aboit my diet and feel like SCD diet is of no use and I hate this thing the most. If you want her to be perfectly fine just motivate her and keep a check on her diet.If you cant ask her everything you can ask me because I will be able to answer each n every question of yours without hesitation.

I thank you both for your very informative and detailed answers, I really do. And especially best wishes to you Abhimanyu for your own struggles with the illness - from a Pakistani to an Indian. I thank you for willingness to help. Yes, we´ve been very strict on her with regards to her diet. Eliminating a lot of foods does help in terms of keeping a check on the bleeding, but her symptoms stay and very often come even after eating something very, very safe. We´ve removed dairy products from her diet, also almost that contains sugar, also fructose as well as fibre, but none of it has as of no yielded satisfactory results.

As for the medicines, the doctor has recently emailed my sister to express his preference for Infliximab/Remicade, and so it´ll be after a couple of weeks. My sister is worried, obviously.
Posted 1/10/2018 5:31 PM (GMT 0)
A quick question, is there anything particular that we should be careful about when my niece is put on Infliximab/Remicade?

Thanks in advance, everyone.
Posted 1/10/2018 6:20 PM (GMT 0)
Infliximab/Remicade is a slight immunosuppressant, and as such your niece would be a little more prone to get colds and flus (perhaps one extra per year, it might be a little more severe and last a day longer). There's no reason to be afraid of infections and illness as there's medical professionals, teachers, and others on these medications who do just fine on it despite being close to those who are often sick. Most illnesses of that nature (colds flues), are transmitted through commonly shared objects, like door handles. It's a good idea to be more vigilant with handwashing and to keep a distance from those who are sick and coughing.

If you suspect an infection that needs antibiotics (such as bronchitis, sinus infection, or UTI) then it is best to seek treatment sooner, as the infection will onset quicker, and the symptoms will be worse. If she's prone to them, or think one's coming starting then contact a doctor sooner rather than later.

All that said I am on remicade and have not been a more sick than my normal. I am more cautious with hand washing and it seems to help!
Posted 1/14/2018 10:08 AM (GMT 0)

iPoop said...
Infliximab/Remicade is a slight immunosuppressant, and as such your niece would be a little more prone to get colds and flus (perhaps one extra per year, it might be a little more severe and last a day longer). There's no reason to be afraid of infections and illness as there's medical professionals, teachers, and others on these medications who do just fine on it despite being close to those who are often sick. Most illnesses of that nature (colds flues), are transmitted through commonly shared objects, like door handles. It's a good idea to be more vigilant with handwashing and to keep a distance from those who are sick and coughing.

If you suspect an infection that needs antibiotics (such as bronchitis, sinus infection, or UTI) then it is best to seek treatment sooner, as the infection will onset quicker, and the symptoms will be worse. If she's prone to them, or think one's coming starting then contact a doctor sooner rather than later.

All that said I am on remicade and have not been a more sick than my normal. I am more cautious with hand washing and it seems to help!

Thank you for this very helpful post! I value this much.

The issue here´s that my niece is anyway very fragile with regards to getting ill often. She suffers from asthma and gets cold (cough, flue, fever etc.) very often and most of the times it doesn´t relent without the administration of antibiotics. Mind you, there´s a guess by healing practitioners that continuous courses of antibiotics might well have damaged her intestines and as a result led to ulcerative colitis. Again, a guess.

Anyway, let´s see how things proceed from hereon. We´ll keep in mind the tips you´ve given like hand-washing etc.
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