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Crohn's Disease Forum » Parents of Kids with IBD » Change in treatment necessary-here are the options. Got advice?


06-22-2015, 01:08 PM   #1
CrohnsKidMom
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Change in treatment necessary-here are the options. Got advice?

My 10 yr old son has been on MTX injections for just about 2 yrs. It was working well. He started having an increase in symptoms in March and his subsequent bloodwork and fecal calprotectin results suggested a flare. He had an MRE 2 week ago and saw the GI today. My son has inflammation from the bottom of his stomach to the bottom of his small intestine. There is also thickening of the intestine wall. The GI believes we caught this in time to reverse the thickening, but a change in treatment is necessary. Here are the options we've been given. Any insight, cautions, or advice, would be so appreciated!

1. Prednisone and increase MTX dosage. GI's least favourite option. He believes this is just a temporary fix.

2. EEN via NG tube, 24-7, for a total of 12 weeks. After 12 weeks my son could do NG tube EN feelings 5 nights a week for maintenance. MTX injections would also continue.

3. 8 week Remicade infusions, with oral MTX.

While I don't relish the idea of the risks of Remicade, I think the EEN would be hard on my son emotionally. That's what holding us back there. And while prednisone works well, I have a love-hate relationship with it. And I'm not really interested in temporary fixes. My son prefers the Remicade option, and I think we do too. But I don't know. I just don't know...

Thoughts?
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Son diagnosed with Crohn's March 2013, at age 8
06-22-2015, 01:27 PM   #2
Mr chicken
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My vote remicade+oral Mtx
Remicade is way less risky than immunosuppresants from all the research I have done
Lower cancer risk etc...
Lower surgery risk
Doesn't hurt the liver
Extremely effective
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DS dx at age 7 Crohns
Humira 40 mg every 10 days
Mtx 12.5 mg -due to juvenile spondyloarthritis associated inflammatory bowel disease

Vsl#3ds iron Zantac folic acid


Aka MLP....
06-22-2015, 01:35 PM   #3
Mr chicken
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There is controversy regarding the best treatment for patients with Crohn’s disease because of the lack of direct comparative trials. We compared therapies for induction and maintenance of remission in patients with Crohn’s disease, based on direct and indirect evidence.

Methods
We performed systematic reviews of MEDLINE, EMBASE, and Cochrane Central databases, through June 2014. We identified randomized controlled trials (N = 39) comparing methotrexate, azathioprine/6-mercaptopurine, infliximab, adalimumab, certolizumab, vedolizumab, or combined therapies with placebo or an active agent for induction and maintenance of remission in adult patients with Crohn’s disease. Pairwise treatment effects were estimated through a Bayesian random-effects network meta-analysis and reported as odds ratios (OR) with a 95% credible interval (CrI).

Results
Infliximab, the combination of infliximab and azathioprine (infliximab + azathioprine), adalimumab, and vedolizumab were superior to placebo for induction of remission. In pair-wise comparisons of anti–tumor necrosis factor agents, infliximab + azathioprine (OR, 3.1; 95% CrI, 1.4–7.7) and adalimumab (OR, 2.1; 95% CrI, 1.0–4.6) were superior to certolizumab for induction of remission. All treatments were superior to placebo for maintaining remission, except for the combination of infliximab and methotrexate. Adalimumab, infliximab, and infliximab + azathioprine were superior to azathioprine/6-mercaptopurine: adalimumab (OR, 2.9; 95% CrI, 1.6–5.1), infliximab (OR, 1.6; 95% CrI, 1.0–2.5), infliximab + azathioprine (OR, 3.0; 95% CrI, 1.7–5.5) for maintenance of remission. Adalimumab and infliximab + azathioprine were superior to certolizumab: adalimumab (OR, 2.5; 95% CrI, 1.4–4.6) and infliximab + azathioprine (OR, 2.6; 95% CrI, 1.3–6.0). Adalimumab was superior to vedolizumab (OR, 2.4; 95% CrI, 1.2–4.6).

Conclusions
Based on a network meta-analysis, adalimumab and infliximab + azathioprine are the most effective therapies for induction and maintenance of remission of Crohn’s disease
From
http://www.sciencedirect.com/science...16508514012682
06-22-2015, 01:47 PM   #4
Mr chicken
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Abstract

Background & Aims There is controversy regarding the best treatment for patients with Crohn's disease because of the lack of direct comparative trials. We compared therapies for induction and maintenance of remission in patients with Crohn's disease, based on direct and indirect evidence.

Methods We performed systematic reviews of MEDLINE, EMBASE, and Cochrane Central databases, through June 2014. We identified randomized controlled trials (N ¼ 39) comparing methotrexate, azathioprine/6-mercaptopurine, infliximab, adalimumab, certolizumab, vedolizumab, or combined therapies with placebo or an active agent for induction and maintenance of remission in adult patients with Crohn's disease. Pairwise treatment effects were estimated through a Bayesian random-effects network meta-analysis and reported as odds ratios (OR) with a 95% credible interval (CrI).

Results Infliximab, the combination of infliximab and azathioprine (infliximab + azathioprine), adalimumab, and vedolizumab were superior to placebo for induction of remission. In pairwise comparisons of anti–tumor necrosis factor agents, infliximab + azathioprine (OR, 3.1; 95% CrI, 1.4–7.7) and adalimumab (OR, 2.1; 95% CrI, 1.0–4.6) were superior to certolizumab for induction of remission. All treatments were superior to placebo for maintaining remission, except for the combination of infliximab and methotrexate. Adalimumab, infliximab, and infliximab + azathioprine were superior to azathioprine/6-mercaptopurine: adalimumab (OR, 2.9; 95% CrI, 1.6–5.1), infliximab (OR, 1.6; 95% CrI, 1.0–2.5), infliximab + azathioprine (OR, 3.0; 95% CrI, 1.7–5.5) for maintenance of remission. Adalimumab and infliximab + azathioprine were superior to certolizumab: adalimumab (OR, 2.5; 95% CrI, 1.4–4.6) and infliximab + azathioprine (OR, 2.6; 95% CrI, 1.3–6.0). Adalimumab was superior to vedolizumab (OR, 2.4; 95% CrI, 1.2–4.6).

Conclusions Based on a network meta-analysis, adalimumab and infliximab + azathioprine are the most effective therapies for induction and maintenance of remission of Crohn's disease
From
http://www.medscape.com/viewarticle/843712


Full text on medscape
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06-22-2015, 01:49 PM   #5
Mr chicken
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http://www.wjgnet.com/1007-9327/pdf/v20/i29/9675.pdf

Optimization of the treatment with immunosuppressants and biologics in inflammatory bowel disease
Sara Renna, Mario Cottone, Ambrogio Orlando
Sara Renna, Mario Cottone, Ambrogio Orlando, Division of Internal Medicine, ‘‘Villa Sofia-V. Cervello’’ Hospital, 90146 Pal- ermo, Italy
Author contributions: Renna S, Cottone M and Orlando A de- signed and wrote the introductory editorial for the Topic Highlights. Correspondence to: Sara Renna, MD, Division of Internal Medicine, ‘‘Villa Sofia-V. Cervello’’ Hospital, 90146 Palermo, Italy. [email protected]
Telephone: +39-091-6802966 Fax: +39-091-6802042 Received: October 29, 2013 Revised: January 18, 2014 Accepted: April 28, 2014
Published online: August 7, 2014
Abstract
Many placebo controlled trials and meta-analyses evalu- ated the efficacy of different drugs for the treatment of inflammatory bowel disease (IBD), including immu- nosuppressants and biologics. Their use is indicated in moderate to severe disease in non responders to corti- costeroids and in steroid-dependent patients, as induc- tion and maintainance treatment. Infliximab, as well as cyclosporine, is considered a second line therapy in the case of severe ulcerative colitis, or non-responders to in- travenous corticosteroids. An adequate dosage and dura- tion of therapy with thiopurines should be reached before evaluating their efficacy. Methotrexate is a valid option in patients with Crohn’s disease but its use is confined to patients who are intolerant or non-responders to thiopu- rines. Evidence for the use of methotrexate in ulcerative colitis is insufficient. The use of thalidomide and myco- phenolate mofetil is not recommended in patients with inflammatory bowel disease, these treatments could be considered in case of failure of all other therapeutic op- tions. In patients with moderately active ulcerative colitis, refractory to thiopurines, the use of tacrolimus is consid- ered an alternative to biologics. An increase of the dose or a decrease in the interval of administration of biologi- cal treatment could be useful in the presence of an in- complete clinical response. In the case of primary failure
of an anti-tumor necrosis factor alpha a switch to another one should be considered. Data on the efficacy of com- bination therapy are up to now insufficient to consider this strategy in all IBD patients. The final outcome of the treatment should be considered the clinical remission, with mucosa healing, and not the clinical response. The evaluation of serum concentration of thiopurine methyl transferase activity, thiopurine metabolites, biologic se- rum levels and antibiologic antibodies could be useful for the management of the treatment but it has not been routinely applied in clinical practice. The evidence of high risk development of lymphoma and cutaneous malignan- cies should be considered in patients treated with immu- nosuppressants and biologics for a long period.
© 2014 Baishideng Publishing Group Inc. All rights reserved.
Key words: Inflammatory bowel disease; Optimization; Immosuppressants; Biologics; Crohn’s disease; Ulcera- tive colitis
Core tip: The clinical expression of inflammatory bowel disease (IBD) is heterogeneous with different clinical courses, so it is not easy to find the best therapy for all patients. In recent years the goals of the therapy for IBD patients have evolved from symptomatic control to altering the course of disease by achieving a “deep remission”. Many trials have evaluated the efficacy of immunosuppressants and biologics in achieving clinical and endoscopic remission but the optimization of these treatments is still a debated point. We propose some recommendations about the correct use of immunosup- pressants and biologics for the treatment of IBD, based on the current evidence.
Renna S, Cottone M, Orlando A. Optimization of the treatment with immunosuppressants and biologics in inflammatory bowel disease. World J Gastroenterol 2014; 20(29): 9675-9690 Avail- able from: URL: http://www.wjgnet.com/1007-9327/full/v20/ i29/9675.htm DOI: http://dx.doi.org/10.3748/wjg.v20.i29.9675
06-22-2015, 01:50 PM   #6
Tesscorm
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At dx, my son did six weeks EEN to induce remission, we then reintroduced food and maintained supplemental EN (at half dose, 5 nights/wk) for two years. Inflammatory markets showed that EEN took down his inflammation (believe markers were at normal, or close to, levels). After adding back food, markers started to tick up but then stabilized. Subsequent MREs showed a constant 20-30 cm of inflammation over the two years. So... I think EEN took him into remission, the reintro of food bumped him back out of remission but the consistent supplemental EN kept a lid on the extent of crohns activity....

After switching to an adult ped, he was not comfortable with the simmering inflammation (even though it hadn't worsened in two years) and we started remicade. I think we were lucky in that the two years of inflammation didn't leave any lasting damage.

Recent scope, after two years on remicade, showed no active crohns.

Recent studies seem to be showing remicade is safer than what was previously thought (as far as cancer risk). I was terrified of starting on remi but, now... really very few worries about it. Risks seem to be less than I'd thought and crohns is under control.

Never easy to make the decision.
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
06-22-2015, 02:15 PM   #7
Jmrogers4
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6 months prior to jack starting remicade we did the increase meds, adding Imuran back in, then prednisone burst, then 8 weeks of EEN, FC was still rising and MRE at the end showed similar results as your son. Remicade for him had been a miracle. It's been a year and a half now and FC from 2 weeks ago was 68, normal range 0-168.
Not an easy decision when you just want what's best with least amount of risks. It's hard to think of any risks now when I look at him and he is so healthy and happy.

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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
06-22-2015, 02:16 PM   #8
Maya142
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My daughter loved Remicade. Infusions were very easy, one poke every 4-6 weeks (for her) and no infections or anything like that. The risks of immunomodulators (Imuran, MTX) also scare me more than biologics now. But even then, the risks of the combination seem way less scary to me than the risks of the disease.

My daughter would never have done EEN (stubborn teenager!) but supplemental EN did help at least for weight gain.

Hope you can reverse the thickening and get your boy feeling better. That's the other advantage of Remicade, it often works relatively fast.

Sending HUGS!
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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
06-22-2015, 02:24 PM   #9
CrohnsKidMom
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I am crying right now because I am so encouraged by your comments and thoughtful support. I really wish I could meet all of you and give each of you a big hug. Thank you for taking the time to give me advice and provide these articles. It is so helpful!
06-22-2015, 02:52 PM   #10
Maya142
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If it helps, M was on high dose Remicade for her arthritis for 8 months or so. It was 20mg/kg (10mg/kg is the max FDA approved dose) every 3.5 to 4 weeks - so a LOT of Remicade.

I was very worried about this high experimental dose, particularly since she was on Imuran at the same time, but even at that high dose, with Imuran, she had no increase in infections or viruses. Not even any side effects, except some tiredness the day after the infusion.

Whatever you end up choosing, hope it works like a miracle!
06-22-2015, 04:20 PM   #11
Mehita
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Big Remicade fans here. Once remission was acquired... what Crohn's? To only have to think about it every eight weeks was a nice emotional break for my son. I think it's a pretty big deal that your son has an opinion.

The other thing to consider is puberty. Your son is right there and the quicker you can get him into remission right now, the better chance of following a normal puberty timeline - with his peers. Delayed puberty can be hard on our kids, especially if they are already small.

DS has had no side effects to speak of. Just a little tired on infusion day, but he is always back to normal the next day. He likes being spoiled at the clinic and aside from the poke, it's usually a low key and relaxing afternoon... and unlimited video games for four hours.

I wish we would have started Remicade sooner.
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
06-22-2015, 05:55 PM   #12
Farmwife
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We've done the...
EEN, pred plus full EEN, Mtx plus EEN, Mtx plus Humira & EN, Mtx plus Remicade and as of today.... Remicade & Mtx & sulfasalazine & EN.
Remicade by far had been best!

I hope it gets better. Your doing a great job mama, hang in there!
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
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,
Azathioprine
06-22-2015, 06:34 PM   #13
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I was recently in hospital with a nasty flare and after they converted me from the IV steroids to the oral, my CRP shot back up again. They started me on Infliximab and within 24 hours the bleeding had stopped and within about 72 hours I was back to normal stools.

I have now had my second infusion and I am due my 3rd in a couple of weeks. So far I have not had no side effects, not been pre-medicated before either infusion and have not felt any ill effects during or after. So far so good!!!
06-22-2015, 07:48 PM   #14
Pilgrim
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What really worries me is seeing the bowel wall thickening. If I were in your shoes I would go right to Remicade + Mtx.

I have read some research papers which suggest that top down therapy in children can have more positive results for mucosal healing and longer remission periods.

Plus he'll get spoiled in the hospital by the nurses. He might pretend he won't like that but I'll bet he will!

It seems good for a combo because you won't have to fret about the thiopurine/IFX combo in boys.

Thinking of you and I'm sorry you didn't see a beautiful MRE
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Mom to daughter,age 7, diagnosed at age 3 with Crohn's Disease and son, age 9, diagnosed at age 9 with Crohn's Disease

Current Treatment: Daughter - 40mg weekly Humira,
10mg oral Methotrexate, iron, zinc, Vitamin D.

Son - 20mg Methotrexate injections, 8 weeks EEN
06-22-2015, 08:21 PM   #15
CrohnsKidMom
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Thank you everyone! It is so encouraging to hear such good things about Remicade. I am glad it has worked so well for most of you! I think that is what we are leaning toward, but I'm going to give myself another day to process. Thanks again!
06-23-2015, 01:43 PM   #16
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Hi CrohnsKidMom, as you noticed from my previous post, my son is older, but we are going through the same phase and the same (difficult/impossible) decisions. My heart goes out to you and my thoughts are with you as you go through these decisions.

It is nearly impossible to give you advice, because decisions are so very personal. But here is how we went through it:

Steroids are the devil for us. Our GI is fighting very hard to keep my son out of the "steroid dependent" category (he has a history of Entocort), plus his inflammation is very active right now and steroids are not going to resolve it. He also had a perianal fistula back in the day, and prednisone won't help us prevent fistula, stricture or abscess, which is a big fear of ours. So while GI did give us the option, he made it clear that this was not recommended for us for a number of reasons, and we are not even considering it as a primary treatment at this point.

I think enteral nutrition is an option and has worked well for others. My son just won't go for it though - he is fighting like hell for some normalcy, and there is just no way he's ready to accept a tube feeding. Would I do it if I myself if I had to - yes. Would I do it when I was a kid, I don't know. As you said, it is more an emotional thing - and my son has a perception of what that represents, which in his mind is that he is sick/different/a perpetual patient. It is a hard thing to ask a kid to do. I am in total awe of the children I see doing it, putting in their own NG tubes, etc. I am just brought to tears by their maturity and poise. I wish my son was that kid, but alas he is not, and in the end, it has got to be his decision (esp. at his age).

And then there was one. Remicade. As you saw from my post, we are making the decision to go for it. I am so thankful for the support and information we are getting on the forum, because it is making me much less of a basket case about it. And in my son's case, we are out of choices - his inflammation is reaching a critical point, we have a fistula history, and we need to resolve things as effectively and quickly as possible. So we are going all in, and he's going to combo with Imuran or MTX. Both GI and my son are very optimistic that it is the right thing for him at this time, so I will do my best to get on the bus with them, and not worry until there's a reason to worry. Sometimes you have to solve the problem in front of you, and not worry about the problems that don't exist yet. I have to keep reminding myself of that every day.

Good luck to you, and thank you again to all the brave and wonderful souls on this forum that give your time and support to help others get through these difficult times. You're all amazing
__________________
Mom of son with Crohn's Disease
DX'd 2011 @ age 17

Current Meds:
Remicade (2015)
Imuran 100mg (2012)

Previous Meds:
Endocort
Lo Dose Naltrexone

Current Supplements:
EPA/DHA
AKBA
Iron
Vitamin D
ALIVE multi
Metamucil
Probiotics
06-23-2015, 08:22 PM   #17
araceli
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Another fan of Remicade here. Almost three years and counting.
__________________
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
06-24-2015, 06:30 AM   #18
CrohnsKidMom
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You are all so helpful! It really do appreciate it.

Well, we have decided to board the Remicade train. Now comes the insurance paperwork. I am optimistic there won't be much delay. Now that we've made a decision, I'd like to get moving on this right away.

Thanks again for your comments!
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