Long term Entocort use & weight gain

[Dragon]

My son has been on Entocort for 3-4 years now. We stepped him down to 2 pills a day successfully after about a year, but every time we try to step him down to 1 pill a day, he starts to flare.

He is starting to have an odd appearance in his abdomen. To me, it looks like his upper abdomen is swollen. The GI dr says that is is weight gain from the Entocort and a normal side effect. He isn't getting that low hanging beer gut that I associate with normal abdominal weight gain. Does anyone else have this? In addition to the Crohn's my son has High functioning autism, so he doesn't always effectively communicate his Crohn's symptoms.

He's currently on Methotrexate, Apriso, Entocort, and follic acid to control his Crohn's, and except for his CRP levels he seems to be well controlled. His last Colonoscopy in October 2013 was clear of active Crohn's.

thanks!

 

[Patricia56]

I would say that his CD is not well controlled if he needs steroids - which is what Entocort is and that's why he's getting abdominal fat that's sounds more typical of someone with metabolic syndrome.

I don't know what the risk of diabetes is with Entocort but you might want to make sure they are checking his glucose levels regularly. Or better yet ask his doctor about the risk of diabetes and what should be done to monitor for it.

Also has he had a DXA scan recently? entocort thins the bones much like prednisone does.

why isn't he on a biologic when the methotrexate is clearly not enough?

Did they do an MRE at the same time they did the scope? What were the results?

 

[Dragon]

He's on Methotrexate instead of a biologic because Remicade (while a miracle drug that prevented him from having a major bowel resection) after a year or so, induced a seizure disorder. He's had 2 grand mal (tonic clonic) seizures. One, in the middle of a remicade infusion, and a second, 6 months after stopping his seizure medication b/c he had been seizure free. He remains on the seizure medication and has not had a seizure on the medication.

I believe they monitor his glucose as part of his routine blood work. He has blood draws every 1-3m depending on symptoms. They go a CBC, CRP, Sed Rate, and metabolic panel. His CRP is consistently between 1-2 normally on the entocort, but has spiked up to 4. (we're in the US, so multiple that by 10 if you are not)

We haven't had a dexa done recently, but the last one that was done did show some signs of osteopenia, so he takes a calcium supplement.

I'm not sure what an MRE is, so I don't know if one was done.

Thanks for the suggestions and input.

 

[Patricia56]

An MRE is an MRI of the abdomen. It helps reveal inflammation in the small intestines.

I certainly understand the need to avoid Remicade if it's going to cause seizures. Did they think there was a similar risk with the other biologics and that's why they didn't try those? Or was it because of behavioral concerns since Humira and Cimzia are shots?

Did he try 6-MP/AZA/Imuran before the methotrexate?

The only other thing is that some kids and adults have found using enteral nutrition as a supplement has helped to keep them in remission when meds alone weren't quite enough.

Just wondering because Entocort isn't supposed to be used as a long term maintenance med. Glad to hear they are doing his labs regularly. Sounds like you are on top of things.

Sorry I've gone astray from your original question. If you're concerned about it you might want to consider getting a 2nd opinion.

 

[Dragon]

Since he had the seizure in the middle of a remicade infusion and a second one later, with no previous seizure history, the drs have completely ruled out biologics for both him and myself (I have RA, which is reasonably controlled with Methotrexate). All biologics have a risk of "neurologic side effects". They did try the 6MP in the very beginning, but it was quickly stopped once they realized the severity of his crohn's flare and remicade was begun. Given how long it takes for 6MP to work, I doubt it was enough time.

Thanks for explaining the MRE. No, they have not conducted one on him.

He is supposed to begin a new taper of the entocort this week. 2 pills one 1 day, 1 pill the next, repeating for a month. I think I am going to encourage an enteral plan during the taper and see how he does. He follows a dairy free diet, so we can't use the regular ensure. Not sure what we can use. The soy we used previously has been discontinued by the manufacturer.

 

[Maya142]

There are certain drinks that are used specifically for IBD - the one we used is Peptamen Jr but I'm sure there are others. I'm sure there are dairy-free ones since many kids with IBD have problems with dairy!

I know there is another member (tagging AZMOM!) whose daughter had some sort of neurologic reaction to a TNF-inhibitor and has been allowed to try Stelara (off-label). Might be something to ask your doctor about!

I hope things get better soon!

 

[AZMOM]

Dragon - Maya is right. We can't use TNF blockers because of neuro side effects as well. There are a couple of new ones out. Stelara (which we are on) is one that blocks interlukin 12 & 23. There are a couple of other kids on here on Stelara (Ustekinumab).

Then there's a brand new one as well - Entyvio (Vedolizumab).

Claire's been on Uceris (Entocort with a different release mechanism) for way too long (over a year) and has had side effects like typical steroid use, including drastically decreased growth rate. So, we have started EN (Vital 1.5 formula) to help us wean the Uceris.

As far as the distended abdomen....yeah, I'd say it's the Entocort if all else points to normal. BUT, we've had that upper abdomen distended when she's had flares as well. That's a tough one.

Julie

 

[Dragon]

Thank you both. I am going to call his dr this week and talk about enteral options. I have to say, it's kind of nice in a weird way to see a list of meds that's as long as his cocktail.

Since I don't know how to add signatures to this forum, and don't post very often. here's our lists.

G is 19yo
Diagnosed with Autism 5/98
ADHD about 9/99
Crohn's 7/3/07
First seizure 2/13/09

Current Meds-
Methotrexate 1ml in a 25mg/ml solution once weekly - Crohn’s
Keppra 500 mg 2x/day – Seizures
Folic Acid 1mg 1x/day 5 days per week – Crohn’s
Entocort EC 3mg 2 pills 1x/day – Crohn’s
Strattera 60 mg 1x daily – ADHD
Apriso .375gm 4 pills 1x/day – Crohn’s
Tenex 1mg 2x/day – ADHD
Prozac – 10 mg 1x/day (Anxiety/Autism)
Calcium 500mg 2z/day
Benzaclin topical daily - Acne
Multivitamin
Fish Oil 1000mg 2x day

 

[Dragon]

UPDATE--Met with the dr today. He doesn't believe EN induces or supports long term remission. Without his rx, insurance won't pay for it. :yrolleyes: So if anyone has any links to studies to support EN's benefits, that would be awesome.

On the plus side, the dr has agreed to do a pill cam study. Apparently, it can take a while to get a pre-auth from the insurance, so it's scheduled on 9/2.

Thanks again for all the support and advice. I still think EN is the way to go, and will work on convincing him or seeking another GI. We'll see what the pill cam shows.