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Crohn's Disease Forum » Parents of Kids with IBD » MRE results - active acute inflammation - what now?


07-24-2014, 09:05 AM   #1
jamesmom
 
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MRE results - active acute inflammation - what now?

The GI called yesterday to tell me she had results from the MRE done 7/22. The MRE showed "active acute inflammation in 25 cm of the terminal ileum". She consulted with her colleagues as to whether a more aggressive treatment is warranted, and they agreed that 6MP should be given time to work. So the plan is to stay the course with the current medication.

I was not expecting the phone call and was totally unprepared. I already new there was an issue with the terminal ileum (and the esophagus, stomach, cecum and ascending colon) from the scopes. So like an idiot I didn't ask any questions and said, ok and thanks for calling.

Now, though, I'm wondering what all this means. Does 25cm of active acute inflammation make this more serious? I just don't know how to process this information.
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Mom to James, age 11, Crohn's dx June 2014
Erythema Nodosum dx July 2014

Colazal, 750mg 3X/day
Budesonide, 9mg daily
6MP, 37.5mg daily
Slow FE iron supplement (2 tablets)
Centrum Children's Multivitamin
07-24-2014, 09:17 AM   #2
kimmidwife
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Jamesmom,
I see your child is newly diagnosed in June. So what does this 25cm mean? It means there is inflammation showing active Crohn's. But you already know there is an issue and you know there is inflammation. The important thing is treatment at this point. Your doctors are absolutely correct in their saying 6MP takes time to work. Make sure your child is taking the medication and getting the labs done as directed. Hopefully he will start to show improvement slowly but surely. If the 6mp does not kick in and begin to work then you will need to look at other treatment options available. Sending you lots of hugs and prayers that the medicine kicks in quickly and he starts to improve.
__________________

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
07-24-2014, 09:58 AM   #3
Patricia56
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Mostly what it does is confirm the extent of inflammation in a measurable way so that comparisons can be made in the future. The next MRE they will be able to compare the two and see to what extent the previous area of inflammation has healed.Going ahead with the 6MP is a good treatment plan.

The only question I would have had was whether to bump him up to prednisone given the erthyrma nodosum and extent of inflammation found. But that is entirely a clinical judgment call. And you don't want pred if you don't really, really need it.
__________________
Badger, 18, CD, overall great guy
Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
07-24-2014, 10:11 AM   #4
Maya142
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Yeah, if he's completely miserable from the erthryma nodosum, it might be worth asking if he can try prednisone especially since he also still has inflammation in his GI tract.
Prednisone has WAY more side effects than Entocort, so I agree with Patricia - you really don't want to use unless he REALLY needs it!
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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
07-24-2014, 10:37 AM   #5
jamesmom
 
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He's okay with the erythema nodosum. He's went up to 18 nodules on Tuesday, but no new ones on Wednesday and they seem to be less inflamed today. So I wouldn't consider it worthwhile asking to bump him up to prednisone.

I guess I'm wondering if remicade would be more appropriate than 6MP? Also, a label characterizing his condition would help me understand. Is his current condition mild, moderate or severe? or are those labels not used anymore?
07-24-2014, 10:55 AM   #6
Maya142
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I'm not sure how they categorize disease - someone more experienced will answer that.

But there are usually two approaches - top down and step up. Your doctor seems to be using step up - starting with milder meds to see if they will do the job.
There are now studies that support the top down approach - which gets the disease under control quickly by using the "big" meds like biologics (Remicade, Humira etc.).

If you're not comfortable with the approach your doctor is using, you could definitely get a second opinion. I see you're in NY - we are too and went to CHOP. Boston Children's also has a great reputation.

You could also ask for an appointment with your son's GI and talk to him about why he chose 6MP over Remicade and if he thinks Remicade would be right for your son. It may be that he assumed that you (like many parents) would prefer the "milder" approach.

We went straight to Remicade and I have absolutely no regrets!
Good luck!
07-24-2014, 10:56 AM   #7
Tesscorm
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My son's earlier MRE results also showed 25-30 cm of inflammation. And, as Patricia said, this result was used for comparison to future MREs.

I don't have experience with 6MP but, from all I've read, it does take a bit of time to become therapeutic.

As far as moving to remicade?? While there are a number of meds used to treat crohns, the number is limited... so, you would definitely want to be sure you've given a med (6MP) a chance to work before deciding to move on to the next one.

I don't know if enteral nutrition would have any impact on erythema nodosum but exclusive enteral nutrition does have a comparable success rate at inducing crohns remission as do steroids. It could be used with 6MP to try to induce remission while 6MP is coming up to therapeutic levels. And, perhaps, once the intestinal inflammationis under control, his erythema nodosum will also be alleviated. Of course, it won't be an easy sell to convince him to try this as it does entail approx. 6 weeks of nutritional formula only and no food (some GIs now allow 10% of daily calories in food).
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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
07-24-2014, 11:14 AM   #8
kimmidwife
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Who are you seeing in New York?
Like Maya said it might be worth getting a second opinion. CHOP in Philadelphia is really good. I would stay away from Boston Children's after the whole Justina Pettellier thing but that is just me.
07-24-2014, 12:00 PM   #9
Patricia56
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The data we have on the top down approach suggests that as long as remicade is started within 18 months to 2 years of diagnosis you are likely to see a greater benefit than if you had waited longer.

So waiting for the 6-MP isn't necessarily a bad plan from that perspective. If it works then you have saved Remicade for another day if it's needed.

Of course on the other hand if the 6-MP isn't enough and you end up with remicade anyway you have waited several months when he might have been better.

I think it would be reasonable to ask your GI for a game plan. How long will they wait to see if 6-MP is working? What will be the criteria for deciding that? What would trigger a change in treatment in the meantime? What if he only gets partial remission?

Knowing the plan helps everyone and avoids miscommunication in my experience.
07-24-2014, 01:24 PM   #10
Cupkatemom
 
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My daughter developed the Erythema Nodusum while we were at Disney World - she was miserable and we had to rent a wheelchair for her. When we returned, she was put on Prednisone for 5 days and it helped with the pain immensely. She, too, is on a drug similar to 6MP (Imuran), we noticed improvements with her bowel movements and weight gain beginning around the 6 week mark. Reese has needle phobia so I'm glad that Imuran finally began to work and we have not had to change to Remicade, although it seems to have a great reputation among this forum.
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Daughter dx Crohn's Dec. 2013
Imuran 75mg
07-25-2014, 03:25 PM   #11
malorymug
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I could have written your post 8 weeks ago. I'm still not sure why the MRE results were shocking to me, but I was really bothered by them and wanted to skip the 6mp and go for Remicade. But we stayed the course and 10 weeks in to 6mp my 13 year old boy is feeling better and hold his weight at 91 lbs. up from 78.
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Mom to: 15 year old boy
Crohn's in stomach, small intestine, large intestine, and perianal disease
Diagnosed April 2014, at age 13

Currently taking:
Remicade 10mg/kg every 6 wks
Methotrexate 7.5 mg/wk
Cipro
Augmentin
Miralax

previous meds:
6mp 50mg
Flagyl
Cipro
Prednisone 30 mg
07-25-2014, 03:28 PM   #12
malorymug
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Oh, and, our doc. Said that if we stopped 6mp it would no longer be an option for later. That it just isn't as effective the next time around. I fully except 6mp to not work for us in the future but I'd love to get a couple of years out of it.
07-25-2014, 04:07 PM   #13
David
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I don't know if enteral nutrition would have any impact on erythema nodosum but exclusive enteral nutrition does have a comparable success rate at inducing crohns remission as do steroids. It could be used with 6MP to try to induce remission while 6MP is coming up to therapeutic levels. And, perhaps, once the intestinal inflammationis under control, his erythema nodosum will also be alleviated. Of course, it won't be an easy sell to convince him to try this as it does entail approx. 6 weeks of nutritional formula only and no food (some GIs now allow 10% of daily calories in food).
I was going to bring up the idea of enteral nutrition as well but figured I should read the replies first I'm glad I did and I'm glad you brought up the idea Tesscorm. I'm a big fan of EN in children not just to help bring about and maintain remission, but to help make sure they're getting the nutrition they need in these important growing years.
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