I have been on Entocourt for the last month. I am having the shakes for a little while a couple hours after I take it. Does anyone else have this problem? I know it is better than the alternative!
Any advice?
Any advice?
Entocourt and side affects
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My son has been on Entocort for 2 weeks and aside from the occasional flushed cheeks he has had no bad side affects at all. Good luck!
We paid $50.00 and that's with insurance. We usually pay $5.00 or $10.00 so I questioned him about the price and he said without insurance it would have cost me over a $1,000.00. I usually complain about our insurance premiums, deductible, etc. but I was sure glad to have it that day.
Is your crohn's in the ileum? I hope it works for you!
Is your crohn's in the ileum? I hope it works for you!
Its €136 for one month only, My insurance does not include prescriptions but thankfully our government do have a drug payments scheme so I only have to pay maximum €132 in a calendar month. Including everything my bill comes to €246 per month now, if it wasn't for the scheme i'd be broke.
Yes ileum crohns, waiting on my MRI in 3 weeks to see how far into the small bowel its developed.
Yes ileum crohns, waiting on my MRI in 3 weeks to see how far into the small bowel its developed.
My Crohns is in my ileum. And this medication is driving me crazy! Although its better than the alternative. If they just had something to make the caffine overdose go away! Either that or I need to wrap my mind around this feeling and embrace this feeling as healing!!
My doctor gave me a prescription for this today, will start taking next week when I return from a long-overdue long weekend. I have other health considerations that make taking any kind of immunosuppressant not the best options. She felt that this was one of my better options, as the side effects should be minimal and most importantly, it shouldn't affect my immune system or interfere with my other medications. She told me that I might expect some slight weight gain, possible blood pressure rise, and a couple of other things that I don't recall right off-hand but she said that most of the side effects should be short-lived and will disappear completely when I stop taking it.
I figured I'd come here to see what other's experiences were and lo and behold, I find this very timely thread. Woo hoo!
I figured I'd come here to see what other's experiences were and lo and behold, I find this very timely thread. Woo hoo!
Welcome, like me, it was a welcome relief to find this thread so quickly. My side effects are minimal, some heartburn now to add so i'm feeling quite lucky so far. Best of luck on it, I would suggest taking them early in the morning and with some food as they can be very harsh on the stomach.
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I had the shakes from it - they went away after a couple of weeks. It helps to realize what it is, and that it will go away. Generally, the Entocort worked great for me, it's just that it's not a good long-term solution. I was on it for about a year.
sawdust
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I also had the shakes, weight gain, and more pimples than I had as a teenager. None of this was outdone by the fact that it worked! It worked! And I found it to be infinitely more tolerable than prednisone, but I also was happy for those side effects when i really needed it. Good luck to you. I hope it works as well for you as it did for me. It wasn't side effect-free, but boy was it ever better than the pred for side effects!
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For the "caffeine" effect - some Benadryl might help, if you are allowed to take it. It's a very safe antihistamine, with a mild sedative effect - which might bring you down closer to normal.
Good Luck, I'm on it two weeks now. So far so good, energy levels coming up, havn't had any bad side effects, indigestion, muscle cramps but haven't had the caffine effect at all but I had a horrific day in work yesterday and forgot to take my tablets and by lunchtime i was a mess.... had the shakes, muscle cramps everywhere and nearly fainted, thats when I realised what i'd done and immediatly took them and within two/three minutes was feeling fine.
Day 2 and I've noticed one thing that I don't recall seeing in the list of side effects (though it's HIGHLY probable I overlooked it). My taste has changed, everything seems to have a slightly metallic, bitter taste. Hoping that goes away. Anyone else experienced that?
Good news!! The caffine overload feeling slowly went away!! No more shakes or feeling dizzy! I hope I dont have anything eles pop up! And it sure beats the hosp! :dance:
My caffeine overload is slowly fading, gets a little better everyday. And the change in taste has pretty well gone away as well. Right now, the only "problems" I have are a decided lack of appetite, and dry mouth. I've lost 5 pounds since Wednesday. Considering that I have a considerable amount of weight to lose anyway, I'm not complaining about that one :thumleft: I haven't really noticed much change in anything else but I understand it can take some time so I'm not too concerned with that.
The side effects are manageable and I'm grateful for that. Here's hoping everyone else is also doing well!
Suzanne
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Entocort is formulated so that it isn't easily absorbed - it stays mostly in your intestines, not much of it gets into your bloodstream.
Yeah, didn't know that either, mine has a big sticker that says take with food and my doctor told me the same thing.
Astra
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And my sticker from the pharmacy on the tub says what I mentioned above.
So I checked the leaflet inside and it says the same.
Also don't take any indigestion remedies 2 hours before or 2 hours after taking this med.
In comparison, you need a full stomach with Pred.
and Sarah, try taking very early in the morning, not lunchtime, this will reduce any shakes and insomnia that may occur.
xx
So I checked the leaflet inside and it says the same.
Also don't take any indigestion remedies 2 hours before or 2 hours after taking this med.
In comparison, you need a full stomach with Pred.
and Sarah, try taking very early in the morning, not lunchtime, this will reduce any shakes and insomnia that may occur.
xx
Could they come from different manufacturers? Also different countries sometimes have different advice on their packets, fairly strange how that is.
Thankfully I havent had any insomnia or shakes, i started taking them first thing in the morning about 7am, but stopped when i realised i wasn't having those side effects and found it much easier to take them later.
Thankfully I havent had any insomnia or shakes, i started taking them first thing in the morning about 7am, but stopped when i realised i wasn't having those side effects and found it much easier to take them later.
From what I'm reading, it can be taken either way, though several websites (sorry, don't have the exact references) say that if stomach upset occurs, to take with food. I think either way is (a) a matter of preference and (b) whatever works for each individual.
I take a handful of pills a day and I just take them all at once, though at least one shouldn't be taken at the same time as another one. I haven't noticed that it made a difference one way or another. I do know myself well enough to know that if I don't take them all at once, something may be missed as I get way too busy and just forget. Probably not optimal but so far, it's working.
I take a handful of pills a day and I just take them all at once, though at least one shouldn't be taken at the same time as another one. I haven't noticed that it made a difference one way or another. I do know myself well enough to know that if I don't take them all at once, something may be missed as I get way too busy and just forget. Probably not optimal but so far, it's working.
Feeling better!! Now if I could figure out what time to take my benedryl so I fall asleep before 230 am I would be good to go! I cant imagine this is due to the Entocort. I take them by 10 am.
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I know if I take Benedryl and then stay up, waiting to get sleepy before I go to bed, it will sometimes backfire on me. I try to take it right before I get in the bed, on an empty stomach, so it acts faster. It's hard to just lie there, so I listen to some kind of halfway interesting talk program on the radio - not anything that makes you think or get mad. Music works too, I think as long as it doesn't suddenly get loud. Just something to take my mind off thinking about not being able to sleep. I have a radio that will play for 1 hour and then turn itself off.
I've started getting severe leg pains, not sure why, it started Saturday after having the worst week ever and getting a stomach bug, then having my MRI and then the stomach bug coming back again I was in so much pain Friday night I had to call the doctor out at 6am. I got a shot of Buscapan and Stematil. Now ever since I have these horrible leg pains, could it be the Entocort? I was so sick nothing would stay down for almost 3 days although I kept taking my meds not sure anything was ingested properly though.
I don't know enough about the Entocort, I suppose it could be possible. But, what sounds like another likely culprit is dehydration and/or an electrolyte imbalance. Both are fairly common when you get a stomach bug and both can cause horrible cramping and pain in your legs. If you can stomach gatorade, try that, along with some additional calcium, potassium, and magnesium. It may take a day or 2 to get your levels back to normal, once the bug goes away. Getting the extra nutrients through food is optimal but if you're still a little woozy, supplements will help as well.
Hope you feel better soon!
Thanks that sounds right, unfortunately I can't get Gatorade here in Ireland I love it but it's just not on sale here, I'll pick up some powerade and bananas that should do the trick.
Back at the hospital on Thursday so I'll mention it all to my doctor, I really hate being so sick
I love it but it's just not on sale here, I'll pick up some powerade and bananas that should do the trick. Back at the hospital on Thursday so I'll mention it all to my doctor, I really hate being so sick
Thanks that sounds right, unfortunately I can't get Gatorade here in Ireland
Back at the hospital on Thursday so I'll mention it all to my doctor, I really hate being so sick
Glad you can stomach it, I can't, blech! The chemo I take gives me cramps in my feet and calves and I drinking it would help but I just cannot drink it without gagging.
Ireland, I've always wanted to go there :thumleft:
I have a friend coming over from Australia soon, think I could get him to bring over some powered Gatorade for me and I can make it up.
Some parts of Ireland are magical alright, it's a long time since I've done any travelling around here. I live smack bang in the city, I do miss the country side.
Some parts of Ireland are magical alright, it's a long time since I've done any travelling around here. I live smack bang in the city, I do miss the country side.
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Just move a little farther out away from the hubbub. Lots of Virginia is rural, and not too far from you.
Oh, I know, we try to get away from here as much as we can. I love Virginia and am originally from Michigan. My boyfriend's from Raleigh NC. My son graduates next year and we'll figure out then, based on his plans and the economy, where we go from here. I'm ready to try somewhere new
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Last time I took Entocort the arthritic joint pain from a Crohn's flair-up turned to a pretty bad muscle pain in all my extremities, shoulders and hips out to my fingers and toes. So I tapered off Entocort quickly and fortunately the Crohn's flare was gone by then. In general I've had difficulty with prednisone too, ranging from bad side effects to a quick loss of effectiveness.
Neither Entorcort nor Prednisone is a long term solution for me.
Neither Entorcort nor Prednisone is a long term solution for me.
Metallic taste is standard side effect of Asacol - are you taking that as well?
The metallic taste went a way after a few days. I'm now, at my request, not taking any meds for the Crohn's. They weren't really doing anything except making me feel like absolute crap. The cure, for me, was far worse than the disease. I know I'm running a risk of it getting worse but I've had "tummy problems" for 13 years and the only time they get better is when I'm not taking my chemo. Then, I have no problems at all. My doctor and I have decided on a wait and see and regular monitor approach. I can contact her at any time if things go astray from my "norm" and I'm comfortable with this.
I was on medication overload and I just can't handle that!
I was on medication overload and I just can't handle that!
If I don't take any of my prescriptions, I am living on Imodium and while I needed to lose the 28 pounds I lost that way, not a good way to lose it! Trying to isolate whether my excruciating leg/foot/back cramps were from just Entocort or just the mesalamines or both acting together....the only medicine that actually helped my symptoms was the Entocort but not sure if it was the Entocort or the combination since I never took Entocort without also taking one or the other of the mesalamines at the same time. The mesalamines without Entocort do absolutely nothing. I totally understand the feeling worse on the meds than without.
