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.

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.

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.

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!

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?

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!

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).

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.

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.

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.

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.

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.

Tesscorm said:

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).

Click to expand...

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.