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Entocort

Hi,

My doctor recently prescribed Entocort for me to try and get my Crohn's under control. I was on Pentasa but could not tolerate that drug (was getting really bad headaches and rapid heartbeat). Has anyone experienced weight gain with this drug? Any other side effects? Also with fall coming up and flu shots coming up I was told by my doctor to make sure I get one, but when reading the paperwork last night on Entocort it said to not get any vaccinations or shots while on this drug? Any suggestions would be great. Thank you all! =)
 
I take entocort in place of pred. because pred makes me go psyco, literally. I usually just kinda feel a little hyper on it, less appetite than on no meds at all. I had the flu shot last year when I was on it and had no ill effects, it worked fine and helped keep things calm inside. I should look into flu shots and the swine flu vaccine this year...I'm guessing once I see the GI again next month I'll be back on entocort for at least a month. I think it's ALOT better then predinsone, for me at least.
 
Is it normal to just take Entocort? From what I have been reading you can only take Entocort for about 12 weeks or so and then they wean you off? does that mean I won't be on drugs anymore? Just curious what other people think?
 
You know a lot more than I do. =) All I am on right now is Entocort. I really don't want to take prednisone since the side effects scare me.
 
I take budesonide (same drug as entocort) because I couldn't tolerate pred (it made me feel really really freaky). I've been taking it for almost a year, along with pentasa. I can't get the inflammation under control so I've now started azathioprine too. I still take the entocort. I haven't noticed any side effects with this drug but it hasn't dampened down my inflammation very effectively. For many people it does do the trick I think.
 

nogutsnoglory

Moderator
Im on entocort and havent had the side effects that come with pred, 90% is absorbed in the gut so you don't really feel it. But make sure not to take this steroid long term.

On a side note I am majorly pissed, my doctor today told me I should get swine flu shot the LIVE one. I was like um I have crohns and take immuno-suppressors, and he just responded "oh yeah well maybe you should wait for the inactive version" WTF you are a doctor!!!
 
J

JillianB82

Guest
I was on Entocort for about 4 months when I was first diagnosed. That drug is AMAZING!!!! The only side effects I had were~

Bruised easily
Blind spots on my eyes
Gained about 20lbs

I was also only taking Entocort at the time.

I was told to quit my cold turkey, but every GI is different. :)
 

nogutsnoglory

Moderator
jillian when you say bruised you mean black and blue marks or you just had some aches in the body? I have some pain in my legs and lower back, don't know if its attributable.
 
I have started getting a pain in my lower back and down my legs, I just attributed it to my sciatic nerve getting pinched...I wonder if the Entocort could be causing it?
 

nogutsnoglory

Moderator
Well I dunno that makes 3 of us reporting that problem and all taking entocort. I wonder if anyone else is experience these symptoms?
 
I also take Entocort with Pentasa, been taking 9mg a day of Entocort since May trying to get my Crohns under control. I have also been experiencing extreme headaches, sometimes migraines, I thought it was the Entocort so I talked with the doc and am weaning off. If its the Pentasa then wow this isnt going to end. Entocort makes me more hungry but most foods I am too nauseous or know will cause me pain so I dont eat anyway. After a few weeks the hunger goes away and only sprouts up every now and then. I hope that helps...
 
J

JillianB82

Guest
nogutsnoglory said:
jillian when you say bruised you mean black and blue marks or you just had some aches in the body? I have some pain in my legs and lower back, don't know if its attributable.
Black & blue marks from simply brushing a chair etc

I also had & still have even though I am off of the Entocort, severe shoulder pain in my left shoulder
 
I dunno if this is it... but steroids can mess up your potassium levels which can in turn give you aches and pains like you guys are describing. I'm on pred and I will just eat a banana when my legs hurt. It seems to help.
 
my wife's been on entocort for something like 10 months now. She's finally weaning off. It's hard to tell what side-effects she's had. At some point, it's tough to tell what's the entocort, what's the asacol, what's the corhn's, etc. etc.
But even after all that time, it's nothing bad. It seemed like it was helping for the first few months... now, not so much.
Her GI has been wanting to wean her off for a while, but she had other issues -- reactions to other things, etc.

*shrug*... that's her experience anyway.
 

nogutsnoglory

Moderator
katiesue1506 said:
I dunno if this is it... but steroids can mess up your potassium levels which can in turn give you aches and pains like you guys are describing. I'm on pred and I will just eat a banana when my legs hurt. It seems to help.
That would explain the dizziness and fatigue, it's messing with our electrolyte balance. God, I hate crohn's.
 
Hello

I am new to this forum as I have only just found you ! - I have been reading this thread with much interest and wanted to ask you all a couple of questions, I have been on Budesonide now for about 2 months which was only a short-term thing to get me through my holiday and I am now reducing the dosage.

Does anyone know if you can get side effects from the withdrawal? I am feeling really ill - cold, sleepy, generally unwell and very aching limbs - or do you think it could just be a bug? - things get very confusing when you are on steriods !!
 
I have been on Entocort since April. The side effects I've experienced are 'moon face' not quite as extreme as those on Pred, but I definately have a double chin and my cheekbones have dissappeared to face puff. I have also gained 20 pounds since starting them, and the weight is only in my mid section. My trainer at the gym said entocort will redistribute fat in your body to your mid section. I also bruise much more easily. I never bruised before from a bump, now I will almost always get a bruise. Also since I started I noticed my hair falls out more then it usually did. And I find it alot harder to work out. When i do a medium intense strength workout my muscles hurt much much worse then they used to for 2 days or so.

just thought I would share my experience!
 
I have been on entocort along with remicade for a while now. I tired to go off once but I flared so I went back on. I am in process of tapering off now. I havent noticed any side effects while on it.
 
bella_sky said:
I also take Entocort with Pentasa, been taking 9mg a day of Entocort since May trying to get my Crohns under control. I have also been experiencing extreme headaches, sometimes migraines, I thought it was the Entocort so I talked with the doc and am weaning off. If its the Pentasa then wow this isnt going to end. Entocort makes me more hungry but most foods I am too nauseous or know will cause me pain so I dont eat anyway. After a few weeks the hunger goes away and only sprouts up every now and then. I hope that helps...
I was originally on Pentasa and had the headaches/migraines you described. It got so bad that I finally refused to take any more Pentasa because I was convinced it was causing the problems. Low and behold the pain stopped a day later. I tried going back on the Pentasa because my doctor thought It wasn't the Pentasa and within a day of taking it, the headaches started again.

As for the Entocort, I understand about being hungry, some days I feel like I could eat and eat and eat. Other days not so much.
 
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