Entocort Side-effects... Anyone else experience any of these?

[CourtneyReann]

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!

 

[lisakuney]

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.

 

[crohnschickadee]

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

 

[Sparkle2012]

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. :lol2:
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.

 

[AlliRuns]

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.

 

[kiny]

Do you know if any of that is related to Entocort.

 

[Sparkle2012]

Hungry yet? LOL....I've probably gained 10 lbs.

 

[Sparkle2012]

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.

 

[kiny]

All my symptoms have cleared up with the exception of the hunger and a little more hyper than usual.

Nice, love your avatar.

 

[AlliRuns]

Hungry yet? LOL....I've probably gained 10 lbs.[/]

Hungry but it's a double edged sword; eating is causing me pain.

 

[Sparkle2012]

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.

 

[AlliRuns]

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.

 

[Manzyb]

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

 

[CrohnsChicago]

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.

 

[Manzyb]

Crohnschicago... I'm having the same problem. I had it before taking it and now it's definitely worse.

 

[CrohnsChicago]

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-220...ugname=Entocort+EC+Oral&source=0&pagenumber=6

 

[723crossroads]

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!:Karl::hang::bigwave: PS. I did gain some weight while on it, I think 5 lbs.:frown:

 

[Vantage26]

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.

 

[723crossroads]

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!!!

 

[AlliRuns]

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.

 

[723crossroads]

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!:rosette2:

 

[Sparkle2012]

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.

 

[CrohnsChicago]

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.

 

[Sparkle2012]

Must be the Entacort with the gas then. That's a relief. I thought it was the new after-surgery me. lol Feel better!

 

[723crossroads]

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!

 

[Vantage26]

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.

 

[723crossroads]

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!:heart::heart::heart:

 

[723crossroads]

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?

 

[Sparkle2012]

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!:heart::heart::heart:

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). :biggrin:

Anybody ever experience that? haha

 

[Sparkle2012]

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.

 

[Sparkle2012]

Anyone try GAS-X? Wonder if that would help.

 

[723crossroads]

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.

Yes I still have my gall bladder. Why would it cause lower abdominal pain and pain at my waist side?

 

[Sparkle2012]

I was told could cause radiating pain around waist and toward back and up in between shoulder blades. I experienced some sharp stabbing pains several times in the back waist area...don't have those now. ALSO nausea is gone that came and went for no reason. I feel GREAT. Best gift was take away the gallbladder. Oh and the 2 strictures.

 

[Sparkle2012]

Had popcorn for the first time in years....no issues. No hurting, no cramps, no "plugged up bowel." Stricture surgery has really increased my quality of life triple.

 

[Vantage26]

My stomach usually doesn't gurgle too much. I notice that the lower part of my abdomen feels full even if I haven't eaten in a while. I have gas and pressure build up. Unfortunately, gas-x has never helped me. My GI said that my pressure is too far down my digestive system for gas-x to have a good effect. I've tried beano too, but that didn't do anything. Now I just try to eat smaller meals and lighter items; however, I always have gas. You are right about some people being inconsiderate.

 

[Sparkle2012]

I get that full feeling too...more like big air bubble that I can feel inside my abdominal cavity...it doesn't take long for it to find it's way out....especially if I'm laying down. The public bathroom experience causes anxiety sometimes. I ordered some mini spray Lysol direct from the company and I keep them with me anytime I travel and get an upset tummy. Crohns is Crohns. It is what it is. I'd almost rather go in the woods sometimes. haha I have never actually expressed that to another human being. LOL

 

[723crossroads]

Once you have to do this for awhile in stores or wherever, you learn to hide out till eveyone leaves the bathroom.LOL!:thumright:

 

[Sparkle2012]

Once you have to do this for awhile in stores or wherever, you learn to hide out till eveyone leaves the bathroom.LOL!:thumright:

Oh yes indeed, whenever possible. My last experience like that was when we all unboarded from a train and everyone headed for the bathroom and there was a long line waiting in the bathroom...and as I exited my stall...the walk of shame...there was a gal I used to work with. {groan} Sounds like comedy skit. :rof: If I were wearing a jacket, I would have pulled it up over my head and walked out of there like the headless horseman. LOL

 

[723crossroads]

When I'm going i keep flushing the toilet over and over and that helps some. I used to carry air freshener in a tiny squirt bottle!!!
My hubs thought i was crazy. It made me feel better that I was hopefully not stinking the place up as bad!!! LOL:thumright:

 

[Sparkle2012]

Can you believe this conversation? haha Only on this forum eh? Yep I do all of the above..

 

[723crossroads]

We are a fuuny lot aren't we? But, oh so lovable too!:heart:

 

[Sparkle2012]

:headbang:Yes we are. Thanks for sharing.

 

[Sparkle2012]

When I'm going i keep flushing the toilet over and over and that helps some. I used to carry air freshener in a tiny squirt bottle!!!
My hubs thought i was crazy. It made me feel better that I was hopefully not stinking the place up as bad!!! LOL:thumright:

You can order those tiny Lysols from the company. That makes me feel tons better if I ever get stuck in one of those scenarios again. I don't know why sometimes it is so unpleasant. Does our body make more acid in the digestive process or something? My husband never has any issues like that. (Trying to be delicate in discussing this)

 

[723crossroads]

You can order those tiny Lysols from the company. That makes me feel tons better if I ever get stuck in one of those scenarios again. I don't know why sometimes it is so unpleasant. Does our body make more acid in the digestive process or something? My husband never has any issues like that. (Trying to be delicate in discussing this)

Yes it does. I was told I had too much bile acid and that is why acid reflux and burning butt syndrome.i HAVE TO WEAR BUTT CREAM TO PROTECT AND HEAL SOMETIMES!

 

[Sparkle2012]

I've had that before...didn't know they made a cream for it!! Where do you get it?

 

[723crossroads]

Hi Sparkle, did your signature say you do have crohn's? Or that you did and then they undiagnosed you? That happened to me. I had colonoscopy and it showed ulcers and inflam. in Ileum and colon. Last visit the Dr. says maybe you just have IBS because nothing showed on the catscan. You know what I say, BS!!!! I have flares and pain and so many symptoms of crohns. I know it is crohn's. Dr.'s!!!:ytongue:

 

[Sparkle2012]

First GI said Crohns and set me up to start Humira injections. I kept calling with questions and they said we will give you an appt with our Humira expert. That GI said your markers are not showing Crohns. Have you had a Crohns test? NO. So more tests...no Crohns but strictures thought to have occurred years of aspirin taking, antibiotic therepy for years for Rosacea, chronic horrible constiptation. Gallbladder was ready to come out. So we took a wait and see on it. Had another blockage...this time emergency surgery to remove gallbladder and stricture. GI was a not show/no care so surgeon referred me to GI #3, a woman. Surgeon said it "looked like Crohns." I came thru that surgery feeling great. Gurgly stomach, horrendous gas, and regular BMs...that's a first. I suspect Crohns but why can't they find it. I have had soo many tests ---Upper GI, lower GI, HIDA scan, CT scan, tons of blood tests -- no evidence of Crohns. The biopsy from the surgery indicated not Crohns, not Cancer.
I have no problems and can eat what I want. After this steroid therapy (Entocort) I'll have more testing to see how my markers are.

Do you then have Crohns?

 

[723crossroads]

I saw it on the colonoscopy, the ulcers and inflamation, so yes I say I do. and 2nd G.I says maybe just IBS because ulcers aren't necessarily from Crohn's!!! Unbelievable!:ywow:

 

[bluemuse]

Just adding my 2 cents to the original poster's question...

I definitely had the symptoms you mentioned when I started Entocort. Bad insomnia, which I normally don't have at all. Anxiety. Irritability that was almost embrassing - not normally an irritable person. Weight gain. Spacey-ness. And the worst was a week or so of really dark depression. Had to go on low dose anti-depressant.

I stayed with it and things stabilized but the irritability and the weight gain remained. I really had to have an anti-depressant at the same time though. I can't imagine what Prednisone would do to me. Not doing it.

 

[Sparkle2012]

I saw it on the colonoscopy, the ulcers and inflamation, so yes I say I do. and 2nd G.I says maybe just IBS because ulcers aren't necessarily from Crohn's!!! Unbelievable!:ywow:

I heard that to. Did he say what ELSE might cause ulcers in the bowel? I know aspirin products is one.

 

[Sparkle2012]

I am on my last 6 Entacort pills - thank God. 24 lbs later. I had a voracious appetite for sweets and pastries.....never reach a satiety level when eating. I could eat my plate and yours where before, I would eat half a meal and bring the other half home for my hubby's treat next day. Lately I'm having crazy hot flashes --sweating -- on and off on and off -- hot and cold hot and cold within minutes of each other. is that Entacort? Or the fat I'm producing around my middle which is producting hormones? Not sure. Another thing lately is acid reflux --- again weight or meds? Don't know. After next week hopefully I can get this weight off and see if it's something else causing it. And I hope the gas goes away because it's ridiculous at night, like some crude comedy routine.:ywow:

 

[723crossroads]

I heard that to. Did he say what ELSE might cause ulcers in the bowel? I know aspirin products is one.

Yes that or nsaids of any kind. I can't recall what else he said.

 

[723crossroads]

I am on my last 6 Entacort pills - thank God. 24 lbs later. I had a voracious appetite for sweets and pastries.....never reach a satiety level when eating. I could eat my plate and yours where before, I would eat half a meal and bring the other half home for my hubby's treat next day. Lately I'm having crazy hot flashes --sweating -- on and off on and off -- hot and cold hot and cold within minutes of each other. is that Entacort? Or the fat I'm producing around my middle which is producting hormones? Not sure. Another thing lately is acid reflux --- again weight or meds? Don't know. After next week hopefully I can get this weight off and see if it's something else causing it. And I hope the gas goes away because it's ridiculous at night, like some crude comedy routine.:ywow:

Are you sure you're not in menopause??? Not to be funny, but it sounds like it! I didn't gain much at all or have any symptoms with it. Maybe if I did gain it was 5 lbs at most. I am always hungry though but that is my nature.But only in the evenings. I used to go all day and only eat dinner then whatever else.

 

[Guest2383]

Along with many of you, I have experienced some, but not all the side effects associated with Entocort. Major areas of concern related quite worrying hypertension [already mentioned], but mostly pronounced changes in mood manifested in irrational irritablity. Initially, a high dose [9mg daily] porduced something akin to hypomania. It drove my wife insane, but with the excess of energy I was able to renovate a complete verandah!

This eventually dissipated and I returned to a state of inertia after about three weeks. I must admit that during the hyperactive phase I was having extreme difficulty in putting two cogent thoughts together and my memory was markedly affected. Nocturnal leg cramps was another bothersome issue, eventually treated successfully with Quinine.

Flatulence was spectacular to the point were it an Olympic event I could have been a medal contender! Disappointingly, Entocort made no difference at all to the amount of bowel movements I usually have.

Weighing up the 'benefits'against the unpleasant and possibly dangerous side effects, I would not take this medication in the future.

 

[SusanWellmann]

I've been on Entocort for about 2 weeks and the GAS is out of control. I have had dizzy spells, unable to sleep at night..(that is the worst) and I feel stupid..Can't remember things, can't think of words, the words I want to say just don't come to me. I had no idea this was from the Entocort until I read this thread. Just yesterday I told my husband how dizzy I have been feeling...and had no idea why. Now I know. Kind of a relief to find out it's from the drugs. SO far, even with all these side effects, I feel better on the Entocort than I did on Prednisone. I will stick it out.

 

[723crossroads]

I've been on Entocort for about 2 weeks and the GAS is out of control. I have had dizzy spells, unable to sleep at night..(that is the worst) and I feel stupid..Can't remember things, can't think of words, the words I want to say just don't come to me. I had no idea this was from the Entocort until I read this thread. Just yesterday I told my husband how dizzy I have been feeling...and had no idea why. Now I know. Kind of a relief to find out it's from the drugs. SO far, even with all these side effects, I feel better on the Entocort than I did on Prednisone. I will stick it out.

It had me in remission for a long time!:ysmile:

 

[lukefarrell]

Hi All

I am on day 1 of Entocort today. 9mg per day.

How long did you roughly have to wait until any side effects stated to becme noticeable and apparent?

Thanks

Luke

 

[Guest2383]

Hi Luke,
Within the first week, but this will vary from from person to person.

Regards,
Merv

 

[723crossroads]

Hi Luke,
Within the first week, but this will vary from from person to person.

Regards,
Merv

I was on it for 3 months and didn't notice anything much except maybe I had more energy.:ywow:

 

[SusanWellmann]

Hi All

I am on day 1 of Entocort today. 9mg per day.

How long did you roughly have to wait until any side effects stated to becme noticeable and apparent?

Thanks

Luke

I have been on Entocort for about 2 weeks, took approx. five days in to notice the excess of gas and dizziness. I don't feel bad, just gassy and dizzy. It could be a lot worse. You might not even have any side effects. Everybody reacts differently. Feel Better.

 

[lukefarrell]

Thanks folks

 

[tmclaren]

Entocort is used because Budesonide has a high first pass metabolism, meaning once the gut absorbs the drug the liver breaks it down to non-active metabolites. This is in contrast to Prednisone which has a high systemic predictability, and plasma concentration. Thus, why many patients on prednisone and prednisone like steroids experience such terrible side effects.

 

[bluemuse]

Yep that is why Entocort is preferred. However a number of people still experience side effects on Entocort as well. I did. I can only imagine how I might react to Prednisone.

 

[tmclaren]

I'm currently on 9 mg of Entocort and am having mania like symptoms with it. Very concerning.

 

[723crossroads]

I guess I was the exception, I didn't notice anything with it other than I did gain a little weight but was only on it a few months.

 

[kiny]

Went over my diary since I used to take them, was years ago.

I had muscle cramps before sleeping, each time right before I would fall alseep I woke up with a spasm.

Weird consious level, like I'm not even part of the world but I stepped outside of the world and kind of float outside it, felt like I wasn't able to focus or make sense of the world.

I was only on 3mg per day, I can imagine 9mg must feel like you're totally out of it sometimes. I weighed so little back then that they gave me a low dose.

 

[723crossroads]

Wow Kiny! Tramadol did that to me. I remember going in the grocery store and feeling like it was a strange land and I was outside looking in. I can't explain the weirdness of it, but I went off that drug straight away! It didn't help my pain anyway!

 

[Sparkle2012]

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-220...ugname=Entocort+EC+Oral&source=0&pagenumber=6

I had quivering eyelid - drives me NUTS. Extreme gas....which I attributed to a bacteria imbalance from the surgery. Took Align -- helped but still gas. Gained 25 lbs in 3 months. I was surprised I didn't feel achy and sore from carrying all that weight. Off Entacort for 3 weeks now -- still huge appetite I struggle with, quivering, gas. Since I stopped Entacort....2-3 day bouts of Diarrhea here and there and muscle/joint aches I didn't have while on Entacort, maybe resulting from weight gain...

 

[Sparkle2012]

Just adding my 2 cents to the original poster's question...

I definitely had the symptoms you mentioned when I started Entocort. Bad insomnia, which I normally don't have at all. Anxiety. Irritability that was almost embrassing - not normally an irritable person. Weight gain. Spacey-ness. And the worst was a week or so of really dark depression. Had to go on low dose anti-depressant.

I stayed with it and things stabilized but the irritability and the weight gain remained. I really had to have an anti-depressant at the same time though. I can't imagine what Prednisone would do to me. Not doing it.

Did your symptoms clear up when you went off the meds? I'm still having some of them 3 week post.

 

[Sparkle2012]

Are you sure you're not in menopause??? Not to be funny, but it sounds like it! I didn't gain much at all or have any symptoms with it. Maybe if I did gain it was 5 lbs at most. I am always hungry though but that is my nature.But only in the evenings. I used to go all day and only eat dinner then whatever else.

I think I missed this post. Funny thing about that. i went thru it late - mid-50's...had a benign tumor in the cervical area which was removed and then no more menstrals. But since the Entacort, I'm plagued with hot flashes. I'm off X 3 weeks still having them. Maybe be the 25 lb weight gain from medicine causing constant hunger and I indulged myself. My gyn says if you have mid-line belly fat, it "produces hormones" even though you are in menopause. Can't say I totally understand all that. I'm really trying to get this weight back down...but I still have the ongoing hunger and lack of satiety "shut off" whatever.

 

[Sparkle2012]

I've been on Entocort for about 2 weeks and the GAS is out of control. I have had dizzy spells, unable to sleep at night..(that is the worst) and I feel stupid..Can't remember things, can't think of words, the words I want to say just don't come to me. I had no idea this was from the Entocort until I read this thread. Just yesterday I told my husband how dizzy I have been feeling...and had no idea why. Now I know. Kind of a relief to find out it's from the drugs. SO far, even with all these side effects, I feel better on the Entocort than I did on Prednisone. I will stick it out.

I was crafting, applying Swarovski crystals to converse tennies. I could not get the "s" to look right and I kept maneuvering it....turns out it was backwards!!!! How can I not recognize that the S was going the wrong direction after All these years! LOL
So entacort may have been causing me issues too in that way.

 

[723crossroads]

I had quivering eyelid - drives me NUTS. Extreme gas....which I attributed to a bacteria imbalance from the surgery. Took Align -- helped but still gas. Gained 25 lbs in 3 months. I was surprised I didn't feel achy and sore from carrying all that weight. Off Entacort for 3 weeks now -- still huge appetite I struggle with, quivering, gas. Since I stopped Entacort....2-3 day bouts of Diarrhea here and there and muscle/joint aches I didn't have while on Entacort, maybe resulting from weight gain...

Make sure you take your Vit. D#3 and magnesium citrate and fishoil too. Supposed to help the joint pain. I am getting a little better with the D3 after raising up my dosage to 10,000 IU. a day.

 

[emillerstudio]

Beware of psychological side effects during and when you go off this drug. I am just finding out from my son's new GI doctor, who is wonderful, that the severe anxiety and depression he experienced after going off the Entocort was a side effect of the drug! He was in a total brain fog the entire couple of months he was on it, and it didn't do anything to help his nausea. When he was gradually taken off it, he just spiraled all that summer into the worst depression, I couldn't understand what was going on. It all made sense a few weeks ago when the doctor said that was a counterindication for my son going back to a steroid. My jaw dropped when I realized he lost a year of his life to depression and then anxiety and had to be hospitalized for anxiety when he was 16. It was just horrible and it makes me furious to realize it was due to this stupid drug. BEWARE BEWARE BEWARE IF YOU HAVE ANY MENTAL OR PSYCHOLOGICAL PROBLEMS WITH THIS DRUG!!!!!

 

[Outlaw]

Hmmm here I was thinking I was just becoming more intolerant in my older age and more likely to inform people if they're being idiotic for their own benefit... It is a public service I tell you, if someone doesn't tell you when you're being a dick how would you know?! I was/am doing society an important job

Now you're trying to tell me it's all drug side effects?!!! I don't believe you. It's all a lie

 

[Sparkle2012]

I took that drug and didn't really notice anything on or off it except EXTREME hunger, gained 25 lbs. and now I have some aches and pains probably from weight gain. I think the Entacort soothed that a bit during the course and coming off of it, I got a double whammy. Funny how are bodies are so different. We all have a unique experience.

 

[ctrl z]

I've been taking entocort for 2 months. The first month, my period came a week late and I experienced dizziness. This month, I had really emotional pms. I actually had an anxiety attack in one of my classes and had to leave. I was pretty mortified. My period this month came a week early and today, after thinking it had stopped, started all over again.

So, first month--normal period that lasted a week but arrived a week late.

2nd month--a week long period, a week of spotting, and today it started all over again.

Good times. :voodoo:

My GI isn't convinced it is related to the entocort and wants me to get checked up with my Gynocologist. The entocort is the only thing that's different in my life so it seems obvious to me that it's related.

Getting checked up by my Gyno anyway.

 

[723crossroads]

I don't know either, I would get checked. How could it affect your period?

 

[ctrl z]

I don't know. Unless it's just a crazy coincidence.

 

[723crossroads]

Probably is.

 

[ctrl z]

Well, that sucks. I certainly do feel crazy. Everyone is telling me I am wrong!

 

[723crossroads]

I don't know. Unless it's just a crazy coincidence.

I just did a quick search and it says it could cause facial hair to grow so that sounds hormonal to me. But, I would still get a gyno opinion and make sure something else isn't going on.It can also cause bad mood swings too I forgot to mention.

 

[nickle2a5]

Sounds gallbladdery to me too. what does your Dr say? lower right sharp, pinchy pain is usually crohns. so glad you have a quick hubby

 

[jazzygirl52]

My stomach usually doesn't gurgle too much. I notice that the lower part of my abdomen feels full even if I haven't eaten in a while. I have gas and pressure build up. Unfortunately, gas-x has never helped me. My GI said that my pressure is too far down my digestive system for gas-x to have a good effect. I've tried beano too, but that didn't do anything. Now I just try to eat smaller meals and lighter items; however, I always have gas. You are right about some people being inconsiderate.

My GI told me to use Phayzne for gas that is more than just stomach... so I bought it but still an issue.

 

[Penbaron]

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!

I just started the same drug regimen today. I will look out for the side effects you mention. I have taken Entocort once before without the side effects you highlight. I do remember that it was better than prednisone. I am also taking Entyvio and Duloxetine.

Good Luck
Penbaron

 

[Penbaron]

I just started the same drug regimen today. I will look out for the side effects you mention. I have taken Entocort once before without the side effects you highlight. I do remember that it was better than prednisone. I am also taking Entyvio and Duloxetine.

Good Luck
Penbaron​

 

[Lizzy613]

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!

I started taking entocort about a month ago, as part of a 3-month treatment to reduce the inflammation in my terminal ileum. I haven't noticed all of the symptoms you mentioned, but some of them definitely ring true.
I'm not eating more, but I'm definitely gaining weight. I'm a bit sad about that, but it's not too bad. I figure if I have a bit extra then whenever I flare next I can just afford to lose a bit more.
I have trouble falling asleep sometimes, but honestly I had that before. I'm pretty careful about taking it as soon as I eat breakfast though. If I forget and it's past noon, I skip it that day lest I stay up the whole night!
I've definitely been having memory problems and having a hard time focusing. I have anxiety/depression though, so is it due to that, or the drugs? I don't know. I also get super fatigued sometimes, but I had that before I started entocort so I think it's just an IBD symptom.
Normally when I take steroids (prednisone for asthma) my periods get crazy heavy, but so far they've been weirdly light. Like, I've barely needed a liner when I normally use 3 maxi pads a day. I'm not complaining, but it's definitely weirding me out!!
As I said before, I already had anxiety/depression, so I don't know if it's making it worse. And irritability is a part of that, so again, i don't know if that's making it worse.

I hope you feel better!! I definitely wouldn't recommend switching to prednisone, that stuff is really strong and messes with all kinds of systems (and I only take it for a week at a time, for asthma!)