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12 year Boy. Any alternative to Remicade or Biologics?

V

Voyager

Our son was diagnosed with Crohn's in October 2015. He had reaction to Azathioprine after 3 weeks; discontinued. Now, doctors(checked with 2 GIs) are saying Remicade. We are very concerned about it's side effects.

Symptoms:
He has perianal Fistula but NO bleeding or diarrhea. Only other symptoms is loss of weight (no gain in last 8 months) and stomach pain sometimes. Anemic due to low iron. Lives normal life with multiple sports. (very high CRP- 15)

Question:
What are alternatives for us? We are thinking asking doctors Prednisone and follow that with alternative therapy such as diet/lifestyle changes or Ayurvedic treatment. Are we crazy? Do you think Remicade is extreme since his symptoms are(/seems to be) not as severe?

Thank you for your help. This forum has been invaluable source.
 
nitty

nitty

Hi!

If your son has a fistula and the other problems you mentioned then I don't think I would class his condition as not severe. You need to get him onto the stronger drugs now to try and stop this from getting any worse.

I believe Remicade is better suited to treat fistulas than azathioprine anyway. There are many people who, understandably, post on here reluctant to take certain drugs. Yes, the side effects are scary, but the risks and consequences of not treating this disease are worse in most cases. Concentrate on the benefits of these drugs instead of the negatives which may never happen.

Try to imagine finding a drug that is successful and that helps your son into remission. And if Remicade doesn't work then try another biologic. This disease is hard enough to deal with as an adult, but for a 12 year old boy it must be even worse.

You might find it useful to look at the 'Parents of kids with IBD' subforum here if you haven't already.

All the best.
 
Last edited:
ronroush7

ronroush7

nitty said:
Hi!

If your son has a fistula and the other problems you mentioned then I don't think I would class his condition as not severe. You need to get him onto the stronger drugs now to try and stop this from getting any worse.

I believe Remicade is better suited to treat fistulas than azathioprine anyway. There are many people who. understandably post on here reluctant to take certain drugs. Yes, the side effects are scary, but the risks and consequences of not treating this disease are worse in most cases. Concentrate on the benefits of these drugs instead of the negatives which may never happen.

Try to imagine finding a drug that is successful and that helps you son into remission. And if Remicade doesn't work then try another biologic. This disease is hard enough to deal with as an adult, but for a 12 year old boy it must be even worse.

You might find it useful to look at the 'Parents of kids with IBD' subforum here if you haven't already.

All the best.
Click to expand...
I agree
 
2

2010mustang

Location
Kansas, USA
Im on remicade and have no side effects. Feeling much better then i was. Have also been on humira which also had no side effects, it just didnt work well for me. Remicade has given me my life back.
 
S

shamrock15

I am with mustang. Remicade gave me my life back. Nothing else even came close to doing it. 6 surgeries and not one of them bought me more than 6 months of relief. Remicade can be discontinued if it is problematic. Surgeries are permanent.
 
V

Voyager

We thank each one you for the quick and exceptionally helpful responses. Amazing!!!

Infusion is scheduled next week.

We do appreciate the time you took and detailed feedback. We will be researching "monitoring" and "To-Do's/Not ToDo" next -:)
 
L

LeafCrAzY

I'm in the same situation as your son. No bleeding etc and old mild pain once in awhile. However, I also have a Fistula. My GI wants me to go on remicade but I want nothing to do with it.

Something I'm goin to ask my GI about is Hyperbaric Therapy as some studies have found it has healed perianal disease.
 
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