Brand new to this forum. Trying to figure out how to post. Clicked reply but not really replying, just wanted to ask a question. I'm starting 9mg of Budesonide tomorrow. Just wondering, after reading a few posts about side effects. Mainly psychological. I'm bi-polar, with bouts of major depression. So, having some anxiety about this medicine since in seems that most people experience depression and anxiety while on it, or while trying to withdraw from it. Any advice? Should I maybe ask doc for something else?
Worried About Entocort Side Effects
- Thread starter Tonnto
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Help Support Crohn's Disease Forum:
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I recently got off of Entocort...it def helped put me in remission or close to it at least, I had headaches, acne, and didn't really notice any psychological side effects while I was on it, but I was using medical marijuana with it. I did however notice mood swings for about 2 weeks as I was coming off of it. Not anything too severe, but I also don't have any kind of history with psych disorders or illness other than SAD...
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On Entocort EC for since May? Has helped 30-40%. Doctor discussed changing drugs if I'm not happy, but so far I'm giving the drug time. Only side effect I recognize is missing a dose. I my 3 pills first thing in the morning, or am sick if I don't. Seeing how my stomach is very sensitive to medication, I prefer the Entocort.
One note, I hope you have REALLY DAMN GOOD insurance. I'm stuck begging for samples from Doctors. Medication is 700 USD Generic and 1800 Name Brand for a ONE MONTH supply.
I have no side effects from taking Entocort but when he takes me off it I get a super bad flare!!!! Not sure why he will not keep me on it long term I also take Humira and he wants to switch to remicade.
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I've been on Entocort for a little over a month. I felt very anxious about starting it too! Reading the huge list of potential side effects made me feel like I was poisoning myself.
BUT it has helped get my symptoms under control wonderfully without significant side effects so far. I have had headaches and sleepiness/spaciness (Which could also be anemia/crohns).
My understanding is that Entocort targets the colon, rather than circulating through your system as much as other steroids, which makes it less prone to causing side effects.
Have you talked to your doctor about possible interactions between Entocort and bipolar disorder? It makes sense to be cautious and keep and eye out for any side effects if you do decide to take it...But I know for me it's a delicate balancing act between being in tune with your body and being so hyper-vigilant that you make yourself sick.
BUT it has helped get my symptoms under control wonderfully without significant side effects so far. I have had headaches and sleepiness/spaciness (Which could also be anemia/crohns).
My understanding is that Entocort targets the colon, rather than circulating through your system as much as other steroids, which makes it less prone to causing side effects.
Have you talked to your doctor about possible interactions between Entocort and bipolar disorder? It makes sense to be cautious and keep and eye out for any side effects if you do decide to take it...But I know for me it's a delicate balancing act between being in tune with your body and being so hyper-vigilant that you make yourself sick.
All steroids interfere with my short term memory and make my normally quick temper even quicker... but entocort is much much milder than prednisone and the effect is really minor. My problem with entocort is the dizziness. First time I was on it 9 mg one month, 6 mg one month, 3 mg 1 month. Next flare same schedule except I stayed on the 3 mg. 5 months. I went off it after the 5 months because I was getting serious bruising from minor bumps. Next flare I was on 6 mg 1 week, it knocked down the flare on the 3rd day but on the 7th day I got horrible horrible vertigo, went down to 3 mg for a week and off. Just started again at 6 mg and really nervous about whether getting the vertigo once will make it more likely to happen again. Anyone have experience with this particular side effect of entocort?
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Can't say I've had side effects. Still get flares but from day 1 to now, I've seen some improvement. One of the few drugs I've taken without noticeable side effects. Blood work sucks but that's probably crohns fault.
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My husband is weaning himself off budesonide. I am not sure if he is doing it at the proper doses. He started his first 4 shots of humira 9 days ago and will give himself the next 2 shots this friday. He does not want to be taking the pills anymore if on humira. He is really having alot of side effects. Not sure if it's because he is coming off the steroid, or if it's from humira. He is angry, depressed and not doing well. He's struggling and really really low. Anyone else experience similiar symptoms?
My GI tapered me off my Entocort since I started HUMIRA. Completely off for four days now and I can tell I they are no longer in my system. Some of my symptoms have returned, even though I have HUMIRA in my system. I was on Entocort for a bit over 9 months, and I am very sensitive to meds as well. Hoping that HUMIRA is the "cure-all", but not even closely there yet.
He should not be tapering the entocort without his doctor's direction. It is dangerous. Yes those are symptoms of steroid withdrawal. There are physical ones too and he really should not be stopping it without medical supervision.
Based on your description I would ask him if he is feeling suicidal. If he has thoughts of suicide or hurting himself, you need to ask if he has a plan and the intention to carry out the plan. If he does then you need to take him in to ER. Hopefully he is not feeling that bad but it's always better to ask hard questions like this.
The Humira is going to take a little while to kick in. He may need the entocort to bridge him until the humira starts to work. He really needs to talk to his doctor.
Based on your description I would ask him if he is feeling suicidal. If he has thoughts of suicide or hurting himself, you need to ask if he has a plan and the intention to carry out the plan. If he does then you need to take him in to ER. Hopefully he is not feeling that bad but it's always better to ask hard questions like this.
The Humira is going to take a little while to kick in. He may need the entocort to bridge him until the humira starts to work. He really needs to talk to his doctor.
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I have had ulcerative colitis/crohns colitis and colon cancer... now crohns more prominent. Just finishing a course of Entocort.. tapered off from 3 pills a day to 2 pills a day and now 1 pill a day (each period was about 3 weeks).
I did notice that I was feeling better (had severe pain) about 4 days after I started it. I had done a major dose of prednisone much earlier in my life after a major bleed, and that drug does a number on your body. Entocort not so much.
I did have headaches if I was late taking it or missed a dose or tapered that dose off. I do have more back aches. I also had really cold feet. I am down to one a day and I have noticed more sensitivity in my digestion and pooping....not as good. Plan is to go on Remicade mid November (Can't qualify for Humira, but hear it is very helpful).
I was wondering if anyone had hormonal effects with tapering off. I am past menopause but been having hot sweats since tapering to one pill a day of Entocort.
And yes, sleepiness, lack of energy, etc have occurred.
Thx
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Was on Entocort for nearly two years. I too have a Bi-polar dx. Had no problems with the drug, and no problems associated with the withdrawal of Entocort. My bi-polar condition is unchanged from before being on Entocort. In fact this was my most successful Crohn's drug to date. I'd happily return to Entocort - I was moved on to Azathioprine which was of no benefit [however I now have the benefits of the associated risks].
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Go for it!
It's worth trying before pred which has more side effects. I'm on budesonide at the moment. It took about 3/4 days to kick in. I had really bad hip and knee pain some nights, but that's worn off now (just keep some codeine handy and a hot water bottle).
I would say that you should keep you else active as much as poss. Relaxing in any capacity during the day would completely knock me out for the morning and well into the afternoon. Although a couple if days a week I really do need a lay in.
Other things I've noticed are my lips swell every now and again, as does my face ever so slightly. I also get really quick tempered.
Everyone is different, but I really was scared of taking this drug & I'm so happy I tried it. It's really helped. Although I did have my first bout of D in a week today, fingers crossed it's a one off.
I'm taking mine with 4mg of Pentasa. This is pointless as it's pretty rubbish, probably as much use as a placebo. But you've got to try these things.
My advise is to take it and not worry about every twinge you feel. If something presents itself you'll know about it, so don't go looking for it as you'll drive yourself nuts.
Good luck and let us know how you get on.
It's worth trying before pred which has more side effects. I'm on budesonide at the moment. It took about 3/4 days to kick in. I had really bad hip and knee pain some nights, but that's worn off now (just keep some codeine handy and a hot water bottle).
I would say that you should keep you else active as much as poss. Relaxing in any capacity during the day would completely knock me out for the morning and well into the afternoon. Although a couple if days a week I really do need a lay in.
Other things I've noticed are my lips swell every now and again, as does my face ever so slightly. I also get really quick tempered.
Everyone is different, but I really was scared of taking this drug & I'm so happy I tried it. It's really helped. Although I did have my first bout of D in a week today, fingers crossed it's a one off.
I'm taking mine with 4mg of Pentasa. This is pointless as it's pretty rubbish, probably as much use as a placebo. But you've got to try these things.
My advise is to take it and not worry about every twinge you feel. If something presents itself you'll know about it, so don't go looking for it as you'll drive yourself nuts.
Good luck and let us know how you get on.
