Share Facebook
Crohn's Disease Forum » Treatment » Prednisone/Entocort » When Entocort isn't working?


 
08-19-2016, 06:12 AM   #1
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
When Entocort isn't working?

Hi all, brief history on me - I'm not fully diagnosed yet but it's almost certainly some type of IBD. Entocort has always worked well on my flare-ups in the past, usually it kicks in fairly quickly and I feel noticeably better.

However, not this time. I started flaring 4 weeks ago. Called my GI and he put me back on Entocort (9 mg). I've been back on the Entocort for nearly 4 weeks. But, it doesn't seem to have kicked in. I've been feeling worse, especially this week. Still having a lot of nausea, fatigue, urgent watery diarrhea anywhere from 10 - 20 times per day.

Anybody else had this happen? Did the Entocort eventually kick in? Or did the "flare" turn out to be something else like an infection? I did stool samples on Tuesday and will be calling my GI's nurse as soon as the office opens up to see if those results are back yet. I just don't know what to do, though. This really feels like a flare, and I'm super frustrated that I'm getting worse instead of better. I see my GI on Monday so hopefully then he'll have some answers for me, but in the meantime I thought I'd ask you guys. Anybody else experience an Entocort fail when it worked great in the past?
08-19-2016, 02:21 PM   #2
aypues
Senior Member
 
Join Date: Mar 2013
Location: San Diego, California

My Support Groups:
Could be C diff with that much D.
Entocort has usually worked well for me in the past too, but not in my current flare. I am bleeding pretty quickly now. I am seeing a new IBD specialist on Weds and will probably be put on Prednisone to stop the bleeding and then switch me to Remicade as the Humira isn't doing anything.
08-19-2016, 05:30 PM   #3
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
Thanks for your response! I was also thinking it might be c diff. However, I got my stool sample results back today, and I tested negative for c diff. I'm also thinking I'm going to ask my GI to switch me to pred, as that might work better, and I am going to ask him about enteral nutrition as well.
08-19-2016, 06:17 PM   #4
Maya142
Forum Monitor
 
Maya142's Avatar
Have you had a Fecal Calprotectin and other stools tests done (other infections besides CDiff)? FC can tell you if it's inflammation (which I'm guessing it is). It's a pretty accurate test. But if it's not inflammation, that might be why Entocort is not working.

Other than that, some people respond better to Pred. It depends where your disease is and how severe it is. If it's in your terminal ileum/ascending colon and is not so bad, Entocort should work.

Enteral Nutrition is much less popular with adult GI's, just as a head's up. It doesn't work quite as well in adults. But it's definitely worth asking for!
__________________
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
08-19-2016, 06:19 PM   #5
Maya142
Forum Monitor
 
Maya142's Avatar
I'll tag my little penguin. Her son had similar diarrhea and it wasn't IBD or an infection, as far as they could tell. He used EEN as treatment.
08-19-2016, 06:37 PM   #6
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
Maya, yes, my fecal calprotectin was within the normal range (they said it was 32 and the normal range is 0-50). I was told that my CRP and ESR were also normal although I wasn't given those numbers (I'm sure my GI will discuss them with me on Monday).

And yeah, unfortunately I'm not fully diagnosed yet so we're not exactly sure which IBD I have or where exactly it's located. Entocort has worked great in the past which leads me to think I have colon and TI involvement.

My GI doesn't like to put me on a lot of IBD meds since I'm not officially diagnosed, so I'm willing to bet he'd be open to the idea of putting me on EEN since it's not actually medication. Honestly, he's probably going to be more on board with that idea than pred (although I'm going to push for both).
08-19-2016, 06:43 PM   #7
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
Oh, and I just realized I didn't answer your question about other stool tests - yes, they tested for a variety of bacteria (campylobater, salmonella, e coli, etc) and a couple other things (cryptosporidium and one other that I don't remember). My GI is very thorough so he had me do a whole bunch of stool tests. They also were very thorough when I went to the ER today (that's where they did CRP and ESR, and they also did CBC, electrolytes, etc). The only abnormal result was that my potassium was low, that was it. Everything else normal.
08-19-2016, 06:44 PM   #8
Maya142
Forum Monitor
 
Maya142's Avatar
What about scoping you now when you're flaring? They're more likely to find something if you're flaring.

FC is not a perfect test, so you may still have inflammation. But with an FC that low, I agree, Pred might be hard to get .

The other thing you could do is try to get some Boost or Ensure and start enteral nutrition by yourself. There are kids on the parents forum who have used those formulas to do EEN. You don't necessarily need something like Peptamen which is much more expensive. Insurance may not even cover it.

But if you try Boost/Ensure and it works for you, well, then perhaps that will convince your GI to give you a script.

Kids are typically put on 100% formula. Sometimes 80-90% works too. We have used supplemental EN (first Peptamen Jr then Neocate) for my daughter, but that works better for weight gain. Our insurance does cover the formula but that is because she has a feeding tube.

Good luck!!
08-19-2016, 10:13 PM   #9
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Big hugs
Ds had diarrhea for about 6 weeks
Tried EEN with peptamen Jr. didn't stop it
Admired for fluids and npo diarrhea stopped
Started clears including ensure clear ( milk protein )
Yep diarrhea came back
Npo again stopped
You get the idea
Multiple c diff and stool tests/Mre /pill cam /upper lower scope plus tons of other tests
All normal
After clean scope tried neocate Jr as EEN
Diarrhea slowly stopped and hasn't been back thankfully since end of May
Ds has slowly reintroduced single foods since the end of June
Still avoiding milk /wheat and some EEN of neocate Jr
But adding things one at a time

No one has any idea of the cause
Or if it will happen again
Iv steriods for his Mre did not stop the diarrhea btw
Or the oral pred he was on for his sweets syndrome

Hopefully een will help you
But realized ds had to basically protein free just amino acids and it tastes bad but he does drink it orally
In the beginning he had 66 oz a day
Completely get the wanting it to just stop

Good luck
__________________
DS - -Crohn's -Stelara
08-19-2016, 11:35 PM   #10
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
Maya, the thought of doing a scope has crossed my mind as well. I guess it all depends on how quickly my GI can get me in. I'll definitely mention it to him on Monday.

That's good to know about insurance maybe not covering EEN. I don't like to do Boost/Ensure because of the carrageenan, but I think Ensure Clear is carrageenan-free. Yet another thing to talk about with my GI.

As far as supplementing EN for weight gain, I wouldn't be opposed to that idea either - I've lost about 9 lbs so far in just 4 weeks, and I am not overweight to begin with (I started at 5'8" and 146 lbs before this flare, I'm now at about 137 lbs and starting to get worried because I can't seem to stop the weight loss). I think ideally I'd like to do EEN for awhile because food is just not my friend right now. I'm having an inordinate amount of diarrhea compared to the very small amount of food I'm eating. Today I had a banana and an english muffin, but I've been to the bathroom probably 20 times with watery d. Hey, if my GI does want to do a scope, I won't even have to prep! I end up basically cleaned out just by eating something small!

MLP, that sounds horrendous. I'm glad to hear your son is doing better now but what a tough road to get to feeling better. I'm in awe of the kiddos who go through this horribleness, I'm a 36 year old woman and I'm crying every day because it's so ridiculously hard. I can't imagine being a child and having to deal with this. Give your son a big hug for me!

When you say NPO, do you mean he was still drinking water, or nothing at all? I've had such issues with diarrhea lately, I still need to drink a lot of water to stay somewhat hydrated (and I've had to go and get IV fluids twice this week so I'm not even doing a good job at that). How long was he NPO before going on EEN?
08-19-2016, 11:43 PM   #11
Maya142
Forum Monitor
 
Maya142's Avatar
I believe MLP's son was hospitalized and on IV fluids and popsicles/pedialyte.

As for carrageenan, Peptamen and Neocate definitely do not have it. But both are very expensive. Typically semi-elemental formulas like Peptamen are pretty bad tasting. Elemental formulas like Neocate are even worse (my daughter made me try both ). Neocate was truly awful -- I could barely get that down. I'm amazed by kids who can do it!

If you look for powders -- Ensure has a powdered vanilla version I think -- those are typically Carrageenan free.

If you are going to do EN or EEN seeing a nutritionist or dietician might help. They can tell you how many calories you need to supplement or if you want it to replace food entirely.

People with IBD often need more calories than you'd expect. My daughter is tiny -- 5'2 and 82 lbs at the time -- and she needed between 2400 and 2600 to gain. We had aimed for 2000 and couldn't figure out why she wasn't gaining. Even her nutritionist was surprised.
08-19-2016, 11:45 PM   #12
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
You sometimes just gotta find the humor in this nonsense. I have been scribbling notes of what I want to talk with my GI about on Monday. I now have 2 full handwritten pages of notes and I'll surely have even more than that by Monday afternoon. I have a feeling it's going to be a loooong appointment!
08-19-2016, 11:48 PM   #13
Maya142
Forum Monitor
 
Maya142's Avatar
Good luck on Monday! I'm sure it seems SO far away when you feel awful. These things always get worse on weekends, don't they?!

I don't know if adult GI practices have an on-call doctor, but our pediatric practice has a GI on-call at all times. They could prescribe something like Pred to get you through until you see your GI. I know the fact that you're technically undiagnosed might make it a bit harder, but it's worth trying if there is an on-call GI.

Are you drinking Gatorade or Pedialyte? That might at least prevent dehydration if you're having so many BMs.
08-19-2016, 11:51 PM   #14
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
As for gaining weight, usually when I'm on steroids I balloon up. I've been on Entocort for 4 weeks now and I've lost 9 lbs when I should have gained a couple lbs. I'm hoping that if I can switch to pred, that'll help me regain or at least stabilize. Normally in a flare I lose weight, on steroids I gain, and in remission I maintain. The steroids should at least be giving me a larger-than-usual appetite, but nope, I have had basically zero appetite during this flare and have had to force myself to eat. So there won't be a big jump from forcing myself to eat to forcing myself to drink EEN.

That's a good thought about the powdered versions of Ensure. Do you just mix those with water? I actually can't do the vanilla version of Ensure - I tried it a few times and it gave me bad diarrhea. But when I tried the chocolate version, it was fine. Must have been some weird ingredient in the vanilla that didn't agree with me. But any flavor other than vanilla should be okay.

I'm guessing my GI will know, but what's the typical timeframe for doing EEN? Or does it differ from person to person?
08-19-2016, 11:56 PM   #15
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
Yes, I've been drinking gatorade. But my taste buds are more sensitive or something in this flare, maybe it's just the constant nausea (zofran takes the edge off but it's always somewhat there). Gatorade tastes SO sugary sweet, it's like it coats my tongue with sugar and it just seems gross to me right now. So I'll have a sip of gatorade and then not drink it again for like an hour, that's how it's been going.

Yes, my GI's clinic has an on-call doctor. But, my GI is really particular about being in charge of my care - years ago when I was first sick, I asked a different doctor to do a prednisone trial. My GI was super mad when he found out! He said he'd never give an undiagnosed person such a harsh medication. But, he did change his tune when I told him that I had a really good reaction to pred. He started taking things more seriously, because of course pred only works on inflammation. I think my GI was starting to go down the "you just have IBS" route, but when pred worked so well for me then he started treating me as though I likely have IBD. So my GI knows that pred works well for me and I think I can use that to convince him to prescribe me some.

And yeah, the weekend is daunting. It seems like such a long wait even though it's only 2 days. Monday is going to feel long as well, because my appointment isn't until 3:40 PM. I will be counting the minutes that day until I can go to my appointment.
08-20-2016, 12:01 AM   #16
Maya142
Forum Monitor
 
Maya142's Avatar
Typically it's 6-8 weeks, but it can be longer. My daughter found it too hard not to eat at all, even when she was at her worst. She has, however, been on about 85% EN when she was very underweight.

Some people with IBD (including my daughter) aren't able to tolerate polymeric forumlas like Ensure. Peptamen and other semi-elemental formulas are more broken down and so are easier to tolerate. There are definitely other semi-elemental formulas but I only know the pediatric ones (Pediasure Peptide for example).

I think powdered Ensure would be mixed with water but we've never actually tried it. We were told that the regular Ensure with carrageenan was ok. There have actually been trials with it and it does induce remission in patients with IBD, despite the carrageenan. I worried about it too though.

Ensure definitely tasted the best to my daughter, but it caused diarrhea for her.

Blender bottles are good for powdered formula. Also, keep the formula cold (tastes better). Drinking with a straw and drinking out of a cup with a covered lid might help.

There are MANY EEN threads on the parent's forum and lots of tips. Bribery is used a lot with kids to get them to do it so you might want to treat yourself if you try it!
08-20-2016, 06:39 AM   #17
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
I have 2 blender bottles - when I'm in remission, I make myself protein shakes using a Ninja blender, then I use a blender bottle to keep the mixture nicely mixed. So I definitely have the equipment needed to mix up the powders.

I'm thinking I might just try some Ensure Clear today as I'm pretty sure that doesn't have carrageenan, and I seem to recall that while it doesn't taste wonderful, it isn't awful either. I'm thinking I might just go get some and do a trial day of liquids only to see how I do. My guts wouldn't let me go to sleep until after midnight, and then they woke me up at 5 AM with urgency, so I'm just not keen on eating food right now. Eating, sleeping, and staying hydrated - those seem to be the basic necessities of life, yet I'm failing at all 3, ugh. At least I still got breathing going for me.

I'm very good at treating myself! Too good, ha ha. When I first got sick, I decided to buy myself a new nail polish after every doctor appointment, diagnostic test, or pharmacy run. It was inexpensive and pretty and made me happy, and I could paint my nails even when I wasn't feeling well. But, of course, I was going to the doctor and pharmacy a lot, so I quickly ended up with wayyyyy too much nail polish, ha ha. Now I'm more diverse at treating myself so that I don't end up being a hoarder of one particular item. I've added a bunch of items to my amazon wish list lately, so I'm sure I'll be treating myself to some of those things.
08-20-2016, 07:55 AM   #18
Charlotte.
Senior Member
 
Join Date: Nov 2014

My Support Groups:
Hi all, brief history on me - I'm not fully diagnosed yet but it's almost certainly some type of IBD. Entocort has always worked well on my flare-ups in the past, usually it kicks in fairly quickly and I feel noticeably better.

However, not this time. I started flaring 4 weeks ago. Called my GI and he put me back on Entocort (9 mg). I've been back on the Entocort for nearly 4 weeks. But, it doesn't seem to have kicked in. I've been feeling worse, especially this week. Still having a lot of nausea, fatigue, urgent watery diarrhea anywhere from 10 - 20 times per day.

Anybody else had this happen? Did the Entocort eventually kick in? Or did the "flare" turn out to be something else like an infection? I did stool samples on Tuesday and will be calling my GI's nurse as soon as the office opens up to see if those results are back yet. I just don't know what to do, though. This really feels like a flare, and I'm super frustrated that I'm getting worse instead of better. I see my GI on Monday so hopefully then he'll have some answers for me, but in the meantime I thought I'd ask you guys. Anybody else experience an Entocort fail when it worked great in the past?

Could you try Uceris instead? First, Entocort did work for me but now Uceris is way more effective, even little to no side effects (water retention etc. which I had with Entocort, but that's very individual). I normally see effects after 1-3 days.

Uceris is Budesonide as well, coated differently, released in the TI and absorbed throughout the whole colon, so maybe more stable (?), at least it covers a larger area. All these drugs are released ph-dependent, so if there is a small change in ph-value, the place where the drug is released may be different from where you want it to be released. Maybe worth trying, so maybe you want to ask your consultant about Uceris.

Fingers crossed you don't need to go back on Prednisone or Prednisolone.
__________________
Crohn's Disease: diagnosed 2014 (at 24), symptoms for 10 years now
Enteropathic Arthritis, Sacroliitis, Osteopenia

Stelara; Uceris; Lansoprazole; Domperidone.

Previously: Remicade, Humira, Simponi, Azathioprine, Methotrexate, Sulfasalazine, Entocort, Uceris, Prednisolone, TPN, EEN, different alternative treatments.
08-20-2016, 08:07 AM   #19
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
DS was hospitalized with an iv drip and nothing by mouth
Then it would stop
Still had D on ensure clear /Popsicles
At home he had pedialyte and neocate Jr while it slowed down
This kept us from needing more iv
Pedialyte makes powder singles for 16 oz of water
We used these vs the already made much more exspensive liter bottles
08-20-2016, 10:46 AM   #20
Maya142
Forum Monitor
 
Maya142's Avatar
Looks like there is a new Boost (Boost Simply Complete) without carrageenan: https://nestleboost-develop.catapult...imply-complete

They have both chocolate and vanilla. That might be one to check out -- I bet it tastes better than Ensure Clear!
08-20-2016, 11:50 AM   #21
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
Thanks, I'll look for that next time I'm at the store! I actually just got back from the store, I bought some Ensure Clear. It's similar to Gatorade, I'd say. It's very sugary sweet and leaves a sugary taste on my tongue that I feel the need to wash out with water. And if I drink too much at once I get a bit nauseous, so it's taken me over an hour and I think I'm only about halfway done with the bottle. Ugh.

I also did buy some Ensure powder as it didn't have carrageenan. It does have a small (less than 0.5%, according to the label) amount of whey, so I'm hoping that's not going to be problematic for me. I do have trouble with whey, but hopefully the amount is negligible and won't bother me. I think I'll try that for dinner.

So far so good on my liquid diet trial today. I don't feel better but I also don't feel any worse than normal. Still a bit nauseated because I just had a sip of the Ensure clear, ha ha.

Less than 52 hours to go until my GI appointment! Not that I'm counting the minutes or anything...
08-20-2016, 01:31 PM   #22
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Ensure clear has whey as its source of protein
It's third on the list
https://ensure.com/nutrition-product...nk#mixed-fruit

Good luck
08-20-2016, 01:41 PM   #23
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
I didn't even notice that! Maybe that's why I got a bit nauseous after each sip. I don't feel too bad now, though. If anything, I'm feeling a slight improvement on liquids only. When I got sick on whey, I think whey was the first ingredient (and maybe only ingredient? A friend of mine gave me some of her whey protein to try and I didn't get to look at the ingredient list). So maybe I can have whey in small amounts. Every day I learn something new about this illness and how it affects me!
08-21-2016, 01:17 AM   #24
aypues
Senior Member
 
Join Date: Mar 2013
Location: San Diego, California

My Support Groups:
Ugh, i was on Entocort and Humira and they werent doing anything. I just started on 40mg of Prednisone today . Hope it works. I am in constant pain, i took half a percocet earlier that took the edge off.
08-21-2016, 06:55 AM   #25
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Ugh, i was on Entocort and Humira and they werent doing anything. I just started on 40mg of Prednisone today . Hope it works. I am in constant pain, i took half a percocet earlier that took the edge off.
I hope you get relief soon.
08-21-2016, 07:55 AM   #26
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
Good luck on the pred, aypues! I hope you get some relief really soon!

As for me, I'm on day 2 of my liquid/Ensure diet. I had a fair bit of cramping and very watery d for about the first hour of the morning. I've also lost another 2 lbs - guess I didn't drink enough calories yesterday. I'm going to make an effort to drink more calories today - I've got a double Ensure (it said to mix 1/2 cup of the powder into 8 oz of water, so I doubled that in my big blender bottle). I've just started drinking it, very slowly, because I don't want to give myself more cramps/d. I also ordered a couple more blender bottles and another thing of powdered Ensure online.

Less than 32 hours until I see my GI!! Starting to get nervous. I now have 3 pages of notes and questions for him.
08-21-2016, 09:08 AM   #27
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
I should also add, I actually slept last night! Lately, my guts haven't been letting me sleep. At bedtime, I tend to get really nauseous and crampy and refluxy, and I end up staying awake until midnight or later waiting for various meds to kick in. Then my guts wake me up at like 5 AM with more cramps and urgency. But last night, I went to bed around 10:30 and I got up at 7. It was wonderful to actually be able to sleep! As I mentioned in my previous post, I did have some d and cramping, but it didn't wake me up. It didn't start until after I was already awake. That's great, being able to sleep was so nice!
08-21-2016, 09:15 AM   #28
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I just weaned off Entocort and wonder why I am experiencing some of the symptoms I have had recently.
08-21-2016, 10:02 AM   #29
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Doubling the ensure isn't recommended since the concentration to powder to water really needs to be very accurate - that alone can cause lots of Gi issues
The powder needs to be dissolved in liquid at the right ratio for your body to process it properly .
Typically Ds needed to drink 66 oz of neocate Jr which is 2000 calories.
30 calories /oz
They do make 1.5 ensure which is more calories per oz but it's harder on your system than regular ensure of 1.0 .

Some are very sensitive to the concentrations and need a kitchen gram scale to measure it .

Good luck with your Gi appt
08-21-2016, 10:17 AM   #30
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
MLP, ah, that might explain why I've been crampy and having d all morning. Ugh. I'm starting to doubt whether I can do this as I still don't feel very well. After yesterday's slight improvement, I'm sort of backsliding again.

Ron, call your doctor tomorrow. You might need to go back on Entocort for longer. As for me, I'm on 9 mg (3 capsules) of Entocort, the highest recommended dose, but I'm still doing this poorly. Ugh.
Reply

Crohn's Disease Forum » Treatment » Prednisone/Entocort » When Entocort isn't working?
Thread Tools


All times are GMT -5. The time now is 08:06 AM.
Copyright 2006-2017 Crohnsforum.com