12yr son- What are alternatives to Remicade?

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Voyager

Joined
Dec 17, 2015
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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.
 
Why ....
Are you afraid ..?
His symptoms are not mild at all
Fistulas form for a reason

Crohns on the simple level
If you have a cut on your skin the area around it gets inflamed ( pink ) as the body tries to heal it and then a scab ( scar tissue forms )
In crohns the body is constantly trying to heal the gut that isn't broken and keeps cycling with inflammation . Sometimes ulcers form as a result.
The intestine is a garden hose very soft and flexible made to move.
The constant cycles of inflammation cause scar tissue ( where the intestine becomes hard like a pvc pipe )or too much pressure builds up from the scar tissue and fistulas ( thinner than the intestine tubes ) the body creates to go around the bad area.

You only have so much small intestine and allowing it to constantly cycle in and out of inflammation causes scar tissue which can not be fixed and eventually needs removed .

Odds of surgery for a kid dx with crohns is 75% within 5 years of dx and once they have one surgery odds of having a second are high s well
You can't live without a small intestine period
Short bowel syndrome can result leaving the kiddo tube dependent

Second leaving inflammation to keep cycling ( some kids have little outward symptoms but doesn't mean damage isn't going on ) increase the risk of cancer as well.


Having a fistula puts your kiddo in the moderate to severe category

Remicade or humira decreases the risk of surgery to 30-40%
There are potential side effects

Emphasize potential
Lifestyle does not fix wounds
If your child had a gapping cut on their arm or chest you would try to fix it with organic food and yoga

Adding healthy lifestyle to meds helps the overall person
But meds are needed


Risks
You take them everyday
Your child do any of the following

Risk of dying
In a car 1 in 250
Swimming. 1 in 1000

Risk of T cell Lymphoma for average person without abd autoimmune disease on the street
2 in 10000

Risk when taking biologics PLUS IMMUNOSUPPRESSANTS ( not biologics alone )
6 in 10000

Tylenol causes death as a risk by SJS ( Steven Johnson syndrome )
Plus liver damage again risk is small so it's often given to infants

Advil same way only kidney damage

Amoxiciilan has same risks as Tylenol


So yes remicade has scary potential side effects
But
Big but here it is the most effective med out there for crohns
And gives you child the chance at normal
Not ostomy bags short bowel
Evils of prednisone ( not a maintence med by the way it will ( not might ) cause
osteoporosous , glaucoma , Cushing syndrome , Addison disease , diabetes , stunt growth
Stop puberty etc...)

We have all been there and cried about the meds especially biologics
But once on them you pray they don't stop working and never ever look back

Hugs
 
Howdy neighbor!! I'm so sorry about your son's diagnosis. I have a 15 year old boy and he was diagnosed 2 years ago. I remember very clearly going through the same struggles about what the right treatment is for my son. It is really hard.

Most of us are pro remicade around here. My Little Penguin gave you some great reasons why and lots of statistics. Me? I spend 10 minutes in the adult section under fistulas and I'm scared to death about what lies ahead for my son. Fistulas and abscesses are really serious stuff (my son too has perianal disease) Remicade is the best treatment for healing fistulating crohn's.

For the sake of our children's future, I chose the big guns so that crohn's will not interfere with these precious growing years (both physically and mentally).

I believe Ayurvedic treatment and other homeopathic treatments have their place but I couldn't risk it for my son and the seriousness of this disease.
 
Hey there! I am the crunchy granola mom of the group.

I have done exhaustive research, met with many different docs and keep coming back to the same place...meds are necessary. I even had a natural path and a functional med doc tell me the same thing.

However, I do still believe in dietary interventions for all medical issues along with the drugs. Food is an amazing and powerful healer but with severe Crohn's disease it can not do it on it's own.

If your son has a fistula, he is already classified as severe.

He is 12 and you want to get control of the disease fast so you can capitalize on his growth potential. I made the mistake of waiting to get my second daughter dx'd and appropriately treated and she is a full 3 inches shorter than her sisters and her growth potential is over.

As for meds...I guess you could change to another immunomodulator called Methotrexate but it takes about 12 weeks to build to therapeutic levels. In the meanwhile you would need something like steroids or Exclusive Enteral Nutrition to handle the disease until Mtx could take over. Sounds like you prefer a more natural way of dealing with things so before I went to steroids I would look at EEN. We used it for both of my girls and it worked wonders. The problem is, it is not as successful as a maintenance therapy. As soon as we introduce food back in, inflammation returns so my girls need a drug of some sort.

Some people are lucky to maintain remission cycling on and off EEN (One month on/2 off) or doing an exclusive period followed by 50/50...paging optimistic. However, neither EEN or mtx are proven to be very successful with fistulas. Your best bet with fistulas is the anti tnf biologics.

I know how hard these decisions are and it really stinks to be facing another med decision so soon after the first...Good Luck!
 
My almost 15 year old was diagnosed in October with Crohn's and a fistula in October too, Voyager, so I closely relate to you. Our doctor strongly recommended Remicade from the start. We went for a second opinion at Johns Hopkins and the doctor there agreed for all of the reasons already mentioned by those who have posted above. A month after diagnosis, we started Remicade. She'll have her 4th treatment next week.

We also combined with 6-MP about a month after starting Remicade. That was also something strongly recommended by the GI. The 2nd opinion doctor didn't think it was necessary to combine right away (she thought it was fine to wait and see if my daughter formed antibodies and, if so, then add 6-MP). Our local GI convinced us that (1) we needed the strongest course of action ASAP to try to heal the damage/fistula; (2) it takes several months for 6-MP to kick in, so waiting until after antibodies formed was too late; (3) once antibodies formed, you can't undo it.

Our daughter also is on a partial enteral nutrition diet (she drinks about 1500-1700 Ensure calories a day). She started off with 100% EN and has backed off from that gradually over time. It made her pain go away IMMEDIATELY.

That's about all I know right now. I think next week we'll be talking about a repeat MRE to see how things are going. Right now, according to blood tests, inflammation is way down/normalized. Now whether that's from Ensure or Remicade or 6-MP, I couldn't say. And whether the fistula is healed or not, I'm not sure. But so far, I feel confident that we have made the right decision about treatment.

Best of luck to you and your son.
 
Pro Remicade here as well but it was a long journey to get there. As you are now I was terrified of the side effects, of admitting that my son needed it, that everything wasn't going to magically improve...
My son's symptoms were pretty much the same as yours except the fistula but that may have been just a matter of time given that he has the genetic mutations for stricturing/fistulizing Crohns (and his father had dealt with several until the level of meds caught up to being able to control his disease).
We tried for 4 years of "lesser" meds, diet, etc. We could never get weight on him, growth was virtually non-existent but no diarrhea, stomach pains were random and rarely. He played sports, did well in school, was happy, never complained. Even his labs were in the normal range, couldn't figure out what was going on. After dealing with this for 4 years and endocrinologist testing that nothing else was wrong, we scheduled an MRE for further investigation and found inflammation throughout the small intestine. Figuring that it had been present for most of the 4 years at some level and after my son just wanted to be normal, he was at that point now the smallest in his class and virtually no sign of puberty at 14 1/2. I agreed to try even if it just gave him a better quality of life. It was a complete turn around, he has grown about 10" in the last 2 years, went through about 3 years of puberty in 1 year and says he has never felt better.
It was not an easy decision to make until I got to the point of something had to change and just like I'm telling you, those before me told me all the same things but it's easy sitting where I am now to say remicade is the da Bomb but unfortunately this dang disease is a journey and no ones path seems to be the same and what works for one child does nothing or has side effects for another. All you can do is make choices with the information you have.
 
You mentioned pred bursts as treatment, pred is the med we all love to hate. It has so many side effects and there is a chance that the kid will have enough a hard time coming off the med. The thing is pred only works while you're on it so when you taper off if there isn't a maintenance med in place the inflammation will come back. Exclusive enteral nutrition(formula feed only) for a number of weeks has an equal efficacy level for many kids and avoids the nasty, sometimes lingering, side effects of pred.

My son has been asymptomatic for a few years, yet simmering inflammation was wreaking havoc. This eventually required surgery which increases his risk for further surgeries. And my son's disease isn't even fistulizing yet which is definitely labeled severe.

We were afraid of the biologics as well but now we fear the possibility of them not working. This disease can be devastating even without symptoms. My son(who is still asymptomatic) has yet to find a biologic that will keep the disease at bay and what that can lead to has scared us much more than the fears of rare side effects.

If your concerns persist maybe putting them all down on paper along with your questions to go over with your GI may be a good option.

Good luck with whatever treatment you choose and may your son achieve long lasting remission far into his future!
 
Out of all the meds I would be most comfortable with Remicade because it seems to have a lot of success. It should hopefully help the fistulas heal. We tried 6 months med free and things only got worse. I definitely wouldn't be keen on Pred unless it's a short course.
 
I can't add much more in terms of advice, you've already been been lots of great advice and information. But, I do want to say that I, as we all do, understand how difficult this is - it broke my heart to agree to start remicade for my son.

While he was a bit older when starting remicade, 18 years old, I can share his perspective. At the time, his only treatment for two years had been supplemental EN (which I was ecstatic over - no side effects and good nutrition for a picky eater! Win-Win!!) but MREs had shown a consistent level of inflammation over the two years (he had no outward symptoms either). Upon transfer to an adult GI, the new GI was adamant that remicade was necessary. That allowing the continuing inflammation would eventually lead to problems such as scar tissue, surgery, etc. I had wanted to try LDN, a more 'alternative' option. As my son was 18, I felt he needed to make the final decision. None of us, GI, me or my son could see into the future so, in the end, it comes down to potential risk, reward, etc. I gave my son all the info I could on both remi and LDN, side effects, study results, etc., etc. He felt strongly that he would rather take the very small risks of remicade over the much greater risk of worsening crohns, surgery, etc. and the impact this would have on his life.

He's now been on remicade for approx. 3 years - and all has been well. :)

Hugs... it's never an easy decision but, once made and you see your son thrive, is much easier to live with. :ghug:
 
One last thing
When Ds was dx at age 7
I cried
He had next to no blood
No diarrhea
Just couldnt eat vomited and stopped gaining weight

I was determine to fix it naturally
Didn't want Pentasa even but agreed finally
Convinced he could just not eat and do EEN ( formula only no food )
Well one month in he got did EEN and 6-mp
That failed and never got him better after 8 months
Got vasculitis with Mtx and pred
So after a year he ended up on remicade at 8
Within 7 weeks the difference was night and day
You just don't realize how sick they really are since you see them every day
Until you see them well again

No one says gee please give me remicade when their kid first gets dx
But once you see the magic
It gets a lot easier
 
Hi voyager.

I am sorry about the diagnosis. It really hits you hard, doesn't it?

I see that crohninct tagged me to respond and I am happy to tell my son's story. I'm doing it less and less publicly but it isn't that popular with some posters! But I'm thick skinned today and think the more educated you are the better you learn to deal with this nightmare.

My son does not have fistulas so I'm not much help with that. He was described as moderate to severe with pretty much his entire track impacted at his first flare. His symptoms were losing 25 pounds and then what we thought was food poisoning, as he unable to keep anything he ate or drank and had severe pain. I'm not sure what put him in remission but he went from hospital to about 3 months of steroids to EEN, and finally now he is on the specific carbohydrate diet for about 70% of his diet and formula for rest. He also takes Omaprizole bc one of his affected areas that was slow to reach mucosal healing was his duodenum. He is doing great a year and a grid later. and is closely monitors by Drs in two cities including Boston children's. He has been tested for and approved for remicade if that becomes needed.

I hope your son sees progress soon. Crohn's sucks!
 
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 -:)
 
I'm a little late to the conversation, but I'll just add a bit about our experience to help ease your mind about Remicade. My son was on MTX injections, which I gave him at home. It failed almost a year ago and he was switched to Remicade with a low dose of oral MTX. My son has had fewer side effects from the Remicade and much prefers the infusions to the weekly needles at home. There is always the worry of the risks of these meds, but the risks of untreated disease are more in the forefront of my mind.
 
My daughter went into full remission on the SCD. She has been symptom and drug free for 10 years. The diet did not work for my son who is now on Remicade, since April and still having symptoms, though fewer. Diet seems to work for some.
 
Hi Malorymug,

Thank you for keeping us in your thoughts. I know, we talked couple of times being in the same city.

Unfortunately, we did not start Remicade 2 weeks ago. We did MRE before we start. After doing that, we "started" Remicade today. Our son is doing well so far. We will have next milestone in 2-3 weeks (after his 2 weeks infusion). We will update you and this group then.

We like to take this opportunity to thank you and each of here who helped us in the decision process.


Thank you,
 
Yay. I'm glad he is doing well and hope he continues to do well. My son is going to his first "teen group" next week for kids with crohn's. I'll let you know how it goes and maybe you all can join us for the next one.
 
Hello everyone,

First of all, apologies for not updating you on our son's condition and treatment plans. He is doing well.

The intent of this post is - Thank each one of you for the help and support you provided when we needed most. Secondly, share our experience.


Where is our son? He is 14, now. Has grown by 7 inches and weight has steadily gone up. He is still on Remicade.

Did we experience bump(s) along the road last 2 years?Yes, every few months, we had one-two challenges(symptoms).

What did we do right? - Obviously, first thing is - Remicade. (Thank you, all). We tried to make everything simple.
1. Changed diet (removed meat, dairy, uncooked, spicy, acidic food. Tried to do as much natural and cooked food as possible. We did spend lot of time on this one. We slowly added homemade Yogurt and other foods (including occasional pizza other things he craved for)
2. No other medication/supplement. we wanted to keep one variable. Added probiotics and multi-vitamin last month to the regime.
3. We kept him active(very active)- Encouraged him to play sports for school. He played football, soccer, basketball for his school team.

Hope this synopsis of our experience adds some value. We would love to share more if needed. We wish we had experience raising a teenager.

What's next? Continue the therapy of Remicade. Explore other options as contingency.

Again- Thank you all for helping us. We have tremendous gratitude towards this forum and each one of you.

MaloryMug, Thank you for taking time and talking with us couple of times.

Please do NOT hesitate to reach us if you need anything.

Wish you happy and healthier year for you and your loved ones.

Thanks,
Parents.
 
So glad he is doing better!! It's great that he is playing sports and feeling normal :). Love hearing success stories!
 
So great to hear! Exercise has been shown in studies to be VERY beneficial for IBD!

May I trouble you to duplicate post this on the Success Stories thread. http://www.crohnsforum.com/showthread.php?t=27079

We often send people there for some encouragement that things do get better but we also often forget to post there so the thread gets stale.
 
Thanks for the update, and glad to hear that things are going well, despite the bumps in the road!
 
@crohnsinct, we think, it is a long road. Success is a relative (in our opinion). We shared some of the positives as we express the gratitude to the forum. An attempt to pause and celebrate small milestones/goals.

However, as you know, with the challenges of Crohn's (so many variables) compounded with physical and mental growth at teenage years, we have plenty of milestones to achieve. Our son is still on higher dosage. Some of his reports and symptoms are not completely normal while improving/improved remarkably. We will definitely post this(similar) message on success stories at the right time.

Anyway, we would love to share both positives and challenges. Also, note that we still feel that we seek a lot information from this group and others.

Thank you and hope this gives a bit more realistic perspective to our earlier post.
 
Hang in there. It does take time. Can I ask what dose of Remicade he is on and how frequent? As you said, sometimes it takes a higher dose and frequency before a kiddo is in remission.

We went from 5 mg/kg to 7.5 mg/kg to 10 mg/kg every 4-5 weeks. There are some GIs who will even go above 10 mg/kg.

My daughter's rheumatologist used "high dose Remicade" for particularly difficult patients with severe arthritis, and put my daughter on it a couple of years ago. That was 20 mg/kg every 4 weeks. At the time, her Crohn's was in remission but her arthritis continued to flare. She had no increase in infections or side effects even with the super high dose.

I mention it because you probably still have room to go up if your son is still having symptoms. You can also add MTX - that sometimes gives Remicade the "boost" it needs to really get the disease under control. Full mucosal healing is now the goal - not just clinical remission.

Sending hugs :ghug:.
 
My apologies for a delayed response, @Maya142. Was out of town for few...

He is on 10 mg/kg per 6 weeks. He had started from 5mg/8 wks. As you said, the unpredictability of the disease makes one have guarded optimism/joy of achieving certain milestones. While we have room to go up, we are exploring if there are any natural supplements we could use, in the event, we have to use them.

Anyway, we wish all the good luck and strength in your daughter's case. Realize that you are facing double challenges. Please do let us know if you need any other information. As you noticed, we spent lot of time on "pattern recognition". However, we did not succeed as much as we wanted to since the teenager's expected co-operation in collecting data points was not as high as it is needed. I would recommend that one should keep diary of highlight events and more importantly find out family history of lifestyle (we tried to give the food which our parents/grandparents used to eat). Obviously, lot of this has very limited impact on whole things of schemes. However, the idea is simplification "may" lead for better analysis (on the contrary, too much effort on simplification may be stressing for patient as well as parents...).

Again, apologies for the delay. We will be seeing his GI in late March or April. Will update you.

Thank you to you and everyone for fighting it together..
 

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