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Crohn's Disease Forum » Treatment » Prednisone/Entocort » Entocort Side-effects... Anyone else experience any of these?


 
10-09-2012, 09:35 PM   #1
CourtneyReann
 
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Entocort Side-effects... Anyone else experience any of these?

Back in April of this year I was put on Entocort 9mg/daily. I took the medicine regularly for a couple of weeks and then called my GI doc to see if I could discontinue.
My Entocort side-effects:
* I eat like a pregnant woman constantly
* Can't sleep without the assistance of Tylenol PM
* Confusion and complete inability to focus - Things that typically make sense to me no longer make a lick of sense. Sometimes I just feel flat out stupid.
* No memory whatsoever... I cannot remember anything to save my life.
* Increased heart rate
* Menstrual-like spotting between cycles
* Something similar to "Alice in Wonderland Syndrome" - sometimes I feel like I'm floating outside of my own body watching things happen - like I'm on the outside looking in
* Mood swings
* Dizziness
* Anxiety
* Irritability - sometimes borderline anger and hatred towards everything and everyone around me.
* Depression - especially around the time of my monthly visitor. I have never really considered committing suicide until I started Entocort. I have PMDD (pre-menstrual dysphoric disorder) and adding Entocort on top of that creates so much emotional pain that I just want it to go away... permanently. Sometimes I want to go to sleep and never wake up. In addition to PMDD I have been diagnosed with major depression with postpartum onset (which I take Pristiq 100mg tab for), generalized anxiety disorder (which I take Xanax 0.25mg tab PRN for) and obsessive compulsive disorder. I see a psychiatrist on a regular basis and she has advised me that taking a drug with a steroid in it can cause steroid medication induced psychosis.
Both my GI doc and psychiatrist are aware of all of this. My psychiatrist wanted me to completely go off Entocort...so I did. Then I ended up using 11 days of sick leave because I had the worst, most painful flare up I had ever had. My GI doc put me back on the Entocort... but I am only taking 3mg daily now with the same slew of horrible side-effects. GI doc says my only other option is Pred which would cause even worse psychiatric effects.
I don't know what to do. I cannot function on Entocort but it's the only thing that helps!
10-10-2012, 09:29 PM   #2
lisakuney
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I had most of those side-effects while on Entocort as well. I'm sorry you are having such a hard time. I elected to stop taking it completely and so far am maintaining on Pentasa, but my Crohn's is in the terminal ileum (small intestine). I hope you can find something that works for you.
10-16-2012, 05:41 PM   #3
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I have been taking entocort for 3 years. I have a lot of those symptoms. I also have Cyclic Vomiting Syndrome so i live on zofran too. I have a lot of bone n joint issues and skin problems that resemble excema...i cant take any of the other meds like Pentasas, 6mp, they make me so sick...i feel your frustration. Im up to 3 benedryl a night
12-30-2012, 11:18 PM   #4
Sparkle2012
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Hi, I'm going on my 2nd month out of 3 on Entacort (post op bowel resection and gallbladder removal). I am experiencing the following: The 2 things I notice most are copious gas and hyperactivity bordering on compulsive. I'm sur I'm driving everyone crazy with my emails, texts and facebook posts.
Also sleep issues if I don't take in the morning, slightly more sweating, hungry all the time especially craving sweets, occasional nausea, acid reflex and hot flashes. I never feel "filled" and can always eat more. I'm glad I'm only on these for 3 months, I'd weigh 500 lbs. I also notice a slight dry feeling vaginally...almost as if I'm trying to get a yeast infection. I'm having slight acne which I don't think is the Entacort as I have rosacea. Even so, I find this an easy medicine to tolerate.
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01-13-2013, 08:39 PM   #5
AlliRuns
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I just switched from Prednisone to Entocort and am feeling the "Alice in Wonderland" syndrome as well. The doc said Entocort doesn't really have side effects and the information pamphlet only mentioned headache, nausea, and heartburn. Glad I'm not the only one feeling side effects. On Prednisone I just felt kind of low, on this stuff I almost feel like I'm high. Earlier today I completely missed with a glass of water and dumped it all on myself. Yup, winning.
01-13-2013, 10:12 PM   #6
kiny
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Do you know if any of that is related to Entocort.
01-13-2013, 11:42 PM   #7
Sparkle2012
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Hungry yet? LOL....I've probably gained 10 lbs.
01-13-2013, 11:43 PM   #8
Sparkle2012
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Do you know if any of that is related to Entocort.
All my symptoms have cleared up with the exception of the hunger and a little more hyper than usual.
01-13-2013, 11:51 PM   #9
kiny
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All my symptoms have cleared up with the exception of the hunger and a little more hyper than usual.
Nice, love your avatar.
01-14-2013, 06:31 AM   #10
AlliRuns
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[QUOTE=Sparkle2012;572286]Hungry yet? LOL....I've probably gained 10 lbs.[/]

Hungry but it's a double edged sword; eating is causing me pain.
01-14-2013, 07:46 AM   #11
Sparkle2012
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[QUOTE=AlliRuns;572406]
Hungry yet? LOL....I've probably gained 10 lbs.[/]

Hungry but it's a double edged sword; eating is causing me pain.
Sorry to hear that. That would certainly discourage me too.
01-19-2013, 09:26 AM   #12
AlliRuns
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Happy to report that the side effects I was feeling from Entocort wore off after the first five days. Now I am experiencing almost no side effects and am feeling pretty good.
01-22-2013, 05:43 PM   #13
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I haven't taken entocort in quite a while, but I remember it making me feel dizzy and goofy.

I'm getting ready to start taking it now, so hopefully it was a fluke last time
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01-25-2013, 11:27 AM   #14
CrohnsChicago
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I just started Entocort for the first time 3 days ago. Is it normal to have so much gas on this medication? Or could it be because I have a larger amount of topical medication overall coursing through my terminal ileum and colon now? (Entocort is topical, I am also on Asacol 12pills/day now instead of my former 8pills/day)

I haven't noticed any other side effect yet. The meds COULD be working/healing things, but I can't really tell yet. The gas is really more of a distracting issue at the moment. And its a crampy gassy pain at that sometimes...ugh.
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Last edited by CrohnsChicago; 01-25-2013 at 11:48 AM.
01-25-2013, 03:19 PM   #15
Manzyb
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Crohnschicago... I'm having the same problem. I had it before taking it and now it's definitely worse.
01-25-2013, 03:34 PM   #16
CrohnsChicago
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I actually have not had much gas issues in the past. Since starting this med a few days ago it is becoming an issue. I had an embarrassing and physically uncomfortable gassy situation yesterday and I hope this doesn't become a frequent thing.

Also today I noticed the corner of my eye has been twitching/trembling lightly all day. I just looked it up and it says that involuntary quivering can be a side effect of entocort.

Hopefully this doesn't amount to more side effects and this other stuff wears off. I'm going to keep my side effects posted here as I go along and see if any of them are comparable:
  • extreme gas (trapped gas/gas cramp/gas pain)
  • quivering on the side of my left eye

Here's a WebMD link I found regarding side effects:
http://www.webmd.com/drugs/drug-2200...0&pagenumber=6
01-25-2013, 03:44 PM   #17
723crossroads
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I was only on Entocort for 3 months, and my Dr. said I shouldn't have much in the way of side affects and I didn't really notice anything other than a burning like I was getting a UTI. But, it went away after I finished taking it. Nothing else really noticable. But I guess because I was only on it 3 months, that is why> hope this helps! Hugs! PS. I did gain some weight while on it, I think 5 lbs.
01-26-2013, 10:38 PM   #18
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I started taking budesonide about two weeks ago. I've noticed I feel slightly dizzy with a clouded head. I seem to be more tired. I tend to make more mistakes while typing or doing something similar.
01-26-2013, 11:23 PM   #19
723crossroads
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I started taking budesonide about two weeks ago. I've noticed I feel slightly dizzy with a clouded head. I seem to be more tired. I tend to make more mistakes while typing or doing something similar.
I was on that before I was switched to Effexor XL. It didn't help me at all. I didn't notice the cloudy head except when I am in a flare or on Neurontin. If it doesn't agree with you, they can always switch you to something else later. Good Luck!!!
01-27-2013, 09:22 AM   #20
AlliRuns
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I started taking budesonide about two weeks ago. I've noticed I feel slightly dizzy with a clouded head. I seem to be more tired. I tend to make more mistakes while typing or doing something similar.
I had the cloudy feeling for the first week or so, it went away, now I'm not seeming to be having any side effects at all.
01-27-2013, 03:00 PM   #21
723crossroads
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Well, That's good news! Is it helping you?
It made me sweat really bad too when I was working i remember. Hope it doesn't do that to you!
01-28-2013, 04:53 PM   #22
Sparkle2012
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I have noticed the sweating as well and copius gas...which I'm hopeful will go way; not sure though since I had started the Entacort and my surgery recovery same week. The thing that bothers me the most is the insatiable hunger. I've gained 15 lbs in 2 months.
01-28-2013, 05:33 PM   #23
CrohnsChicago
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Yeah this gas situation is getting pretty irritating especially when most of it gets trapped. On occasion it feels like I have tiny stomach cramps and it all can depend on how i am sitting/standing or nothing at all. It just creeps up on me.

Been one week now on Entocort and still not really sure how it's helping. Bleeding is still there, saw some small amount of blood clots two evenings ago, but I'm not sure if it was because of constipation and it was sitting in there a while or what. Never had blood clot before in stool. But bleeding is still touch and go...sometimes there, sometimes not and the amount varies.

Before the entocort I had urgencies and would go at least 4-8 times/day. Now switch from having to go three times in a row to not being able to relieve myself even if I really feel I want to. Last night I ran to the bathroom 3 times overnight because of cramping. Either the medication is causing it or the baby flare I had is getting worse while the medication is trying to decide if it wants to kick in or not. I really am not sure and it's super frustrating.

I try to drink homemade ginger tea to calm the gas and eat softer foods/soups. I just want to get rid of this crazy and painful gas!

I have noticed the sweating as well and copius gas...which I'm hopeful will go way; not sure though since I had started the Entacort and my surgery recovery same week. The thing that bothers me the most is the insatiable hunger. I've gained 15 lbs in 2 months.

Last edited by CrohnsChicago; 01-28-2013 at 05:50 PM.
01-28-2013, 07:56 PM   #24
Sparkle2012
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Must be the Entacort with the gas then. That's a relief. I thought it was the new after-surgery me. lol Feel better!
01-28-2013, 10:17 PM   #25
723crossroads
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I have gas everyday no matter what and I'm not on it anymore. I take ginger capsules twice a day and I have endless gas. I sharted today and was so embarrassed and it was just my husband here. But usually i'm already running to a bathroom. This time, I didn't even feel it coming at all. Shocked me! Made me mad too. Back to wearing bigger protection just in case!
02-01-2013, 11:49 PM   #26
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I get bloating and gas. Sometimes I need to fully recline in my chair to be comfortable. I have a hard time sitting at a 90 degree angle for long periods of time.
02-02-2013, 12:37 AM   #27
723crossroads
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I get bloating and gas. Sometimes I need to fully recline in my chair to be comfortable. I have a hard time sitting at a 90 degree angle for long periods of time.
Do you get that gurgling, bubbly sound in your gut after you eat? And those weird pains that feel like a bubble getting bigger and then like it is going to burst and then it goes away. It is spasmotic like. This is the
longest I've had the symptoms since diagnosed. I am flaring. I took enuf immodium to stop up an elephant. Today it wore off after 3 days and I ran upstairs screaming at my hubs to get out of the bathroom. He stands out there saying, are you ok? And all I hear is gas and uncontrollable D! I would run if it were me on the other side of that door!!!! I guess that shows real love!
02-02-2013, 12:42 AM   #28
723crossroads
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Yeah this gas situation is getting pretty irritating especially when most of it gets trapped. On occasion it feels like I have tiny stomach cramps and it all can depend on how i am sitting/standing or nothing at all. It just creeps up on me.

Been one week now on Entocort and still not really sure how it's helping. Bleeding is still there, saw some small amount of blood clots two evenings ago, but I'm not sure if it was because of constipation and it was sitting in there a while or what. Never had blood clot before in stool. But bleeding is still touch and go...sometimes there, sometimes not and the amount varies.

Before the entocort I had urgencies and would go at least 4-8 times/day. Now switch from having to go three times in a row to not being able to relieve myself even if I really feel I want to. Last night I ran to the bathroom 3 times overnight because of cramping. Either the medication is causing it or the baby flare I had is getting worse while the medication is trying to decide if it wants to kick in or not. I really am not sure and it's super frustrating.

I try to drink homemade ginger tea to calm the gas and eat softer foods/soups. I just want to get rid of this crazy and painful gas!
Do you get cramps sort of like lower abdomen ever? I do and it wells up and like you said gets trapped. My Dr. said crohn's doesn't cause pain that low!!! I think he doesn't know because he doesn't have crohn's. I get pain under my left breast and my right side and in back around my waistline and my lower back hurts so bad. Even in between my shoulderblades sometimes for 2-3 days. Do you get that ever?
02-02-2013, 07:38 AM   #29
Sparkle2012
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Do you get that gurgling, bubbly sound in your gut after you eat? And those weird pains that feel like a bubble getting bigger and then like it is going to burst and then it goes away. It is spasmotic like. This is the
longest I've had the symptoms since diagnosed. I am flaring. I took enuf immodium to stop up an elephant. Today it wore off after 3 days and I ran upstairs screaming at my hubs to get out of the bathroom. He stands out there saying, are you ok? And all I hear is gas and uncontrollable D! I would run if it were me on the other side of that door!!!! I guess that shows real love!
My stomache sounds like pipes becoming unclogged sometimes...groaning, popping, wooshing...ha. Also, sometimes I get little tiny pinches here and there...I am guessing that is in the bowel? I thought the gas might be from the Entacort...but someone mentioned that after surgery there can be a bacteria causing that. When I'm off the steroids, I'll start the probiotic. I don't like to overwhelm my system with medicine, that's just me. But honestly. I've never seen such huge amounts of gas...its hard to find a quiet place to have some privacy if you are in public. Embarrassing. And people are so rude and thoughtless...I remembere once someone making comments outside the toilet stall within easy hearing distance. Good thing I'm not in my 20's and am old enough not to give a crap (pun intended).

Anybody ever experience that? haha

Last edited by Sparkle2012; 02-02-2013 at 07:40 AM. Reason: adding
02-02-2013, 07:44 AM   #30
Sparkle2012
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Do you get cramps sort of like lower abdomen ever? I do and it wells up and like you said gets trapped. My Dr. said crohn's doesn't cause pain that low!!! I think he doesn't know because he doesn't have crohn's. I get pain under my left breast and my right side and in back around my waistline and my lower back hurts so bad. Even in between my shoulderblades sometimes for 2-3 days. Do you get that ever?
Do you still have your gallbladder? Sounds like gallbladder pain. Mines gone and I no longer have that. Must have been in bad shape because I used to tell my husband that my right sidei seemed "puffier" than my left side and sometimes I would bend over to the right and it felt like my ribs were catching on something. Used to get shooting chest pains from time to time.
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