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12 year Old boy- Alternate to Remicade or biologics?

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Crohn's Disease
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Posted 2/23/2016 5:17 PM (GMT 0)
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.
Posted 2/23/2016 6:16 PM (GMT 0)
I agree with @brelaxed on all of it. Prednisone is a much scarier, harsher drug than Remicade in terms of the damage it can do to your body. I'm only 29, and already have ostepenia and other complications from steroid use (and I only used it for about 10 months). You can quickly become steroid-dependent. Biologics, though, have the potential for scary side effects, but with much less certainty than prednisone problems. I have been on Remicade for almost 4 years and through two pregnancies (I am currently 33 weeks pregnant). My daughter is 2 1/2 and is completely normal in growth and development.
Posted 2/23/2016 9:35 PM (GMT 0)
I was put on remicade for a fistula and what I thought were mild symptoms 6 years ago.
Having a fistula automatically justified the use of a biologic like remicade and would do so for everyone, regardless of age. If there was a way to get rid of my fistula without remicade, I would gladly jump up on it but there isn't one.
It was truly amazing how well remicade made me feel in such a short period of time!
I have never had any side effects aside from increased thirst and headache on the day of the infusion.
Please post here anytime!
Posted 2/23/2016 11:01 PM (GMT 0)
I agree with the others. If he has a fistula and isn't growing at age 12, his disease is serious and needs appropriate treatment.

Diet/lifestyle changes may make tiny differences, but it's wishful thinking - or rare luck - if they work on somebody with a fistula.

Remicade is worth trying. Sure, it's a little scary, but know that most people get significant benefit from it and have few side effects. If your son is one of the unlucky ones who does get side effects, you can change to another biologic.

Prednisone is to be avoided except for short term courses when a person is feeling awful. It helps a person feel better quickly, but it's not very good at actually healing Crohn's, especially when one has a fistula.

Your son is about to enter his critical growth phase for the next few years, and if his disease isn't controlled, he won't grow properly. And once that window of adolescence is closed, he'll never have another chance to grow and could end up short and light in weight for the rest of his life.

So I think it's important to get the Crohn's under control, and Remicade has the best chance of doing that.
Posted 2/24/2016 4:12 AM (GMT 0)
Remicade is seriously a great drug to get your child into remission. I loved being on it before I built up immunity to it. One infusion every 6 weeks or so was totally manageable and easy. I had no side effects, until I began building up immunity, which then I had to switch to Humira. But it's the most effective biologic drug out there currently for Crohns as far as I know.

Prednisone is good for quick fixes of mild to medium cases, or as an assist with other drugs to help curb flares, but honestly it's such a more dangerous drug than Remicade. The list of side effects are also longer and more likely to occur. The longest I was on this drug was for 8 months and it completely wrecked my bladder until I had spasms that lasted years, had trouble sleeping, night terrors, moon face, rage issues, and increased osteoperosis. I've recovered from these side effects, but I will never again use this drug for longer than 3 months at a time (side effects are limited as long as you aren't on it for very long). It's really just a bandaid fix.
Posted 2/24/2016 3:28 PM (GMT 0)
Remicade is proven therapy for fistulae. Prednisone will not heal his fistula and it is a way more dangerous drug than a biologic. I've been on biologics for 14 years and on prednisone for 20 years, so believe me that biologics (for me) have proven more effective and more safe than prednisone.

The side effects for Remicade are rare and I'm sorry, but no amount of Ayurvedic treatment is going to close that fistula. I'm all for natural stuff and dietary changes as I have used those myself but in the case of a fistula, I think the docs are making the right call. I'd go with the remicade. I know you feel scared, but like scifigal I also took it while pregnant and breastfeeding (2 kids- Humira for 1) and I was on it for 6 years. Remicade was a lifesaver for me.
Posted 2/25/2016 1:56 AM (GMT 0)
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 -:)
Posted 2/26/2016 2:38 AM (GMT 0)
Fantastic!
I hope your son feels better soon!
Posted 2/27/2016 2:01 AM (GMT 0)
Yes, I hope the Remicade works quickly! Keep us updated :-)
Posted 2/28/2016 3:25 PM (GMT 0)
I had 2 infusions of Remicade.....It basically made me have a stroke...well not a stroke, but the symptoms....5 months of recovery and Re-hab. No more Remicade for me! I take Entyvio now, going on my 9th infusion. No Problems!. Beware of Remicade.

55 years old. Diagnosed 1982
large intestine removed
2 setons(should be removed soon its been a year)
currently....6mp and Entyvio


Crohn's Sucks.....Yep!
Posted 2/29/2016 12:46 PM (GMT 0)
One thing, Remicare get it, it will save you a bundle. Infusions at the DR's office is a great deal cheaper than a hospital. Read the side effects from the drug and be watchful, I too had side effects,memory loss and stopped using it. it was great while it lasted though.
Currently trying Entyvio. 2nd infusion tomorrow.
Children should not be cursed with this disease.
Hang in there.
T
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