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Crohn's Disease Forum » Treatment » Prednisone/Entocort » 1st time on Pred. OMG!


02-21-2012, 07:52 AM   #1
SnowDay
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1st time on Pred. OMG!

My GI and I were both reluctant to use steroids, but after a recent flare we decided it was necessary. She put me on a 5 day course of pred at 25mg/day. I took my first dose yesterday. I didn't feel much until the nighttime rolled around. Then it hit.

My legs felt like someone was punching them as hard as they could, this horrible achy feeling throughout my legs and in my arms too. My skin was itching like crazy all night, I could not get to sleep. On top of all this i had this horrible wired feeling like i had just drank 3 double espressos. Worst nights sleep. . . EVER! And for me that's really saying something.

Now I know why we were so wary of it. Never again. Anyway sorry if this is scaring anyone who is about to go onto pred but i thought that if this can help anyone then it was worth posting.
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02-21-2012, 08:06 AM   #2
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Hahaha thats actually a very mild dose for a very short period you will still notice some effects though after 48 hours you will eat everything you can set your eyes on lol... if you take them first thing in the morning you should still have a good nights sleep on 25mg
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02-21-2012, 08:40 AM   #3
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Been on a tapering dose since December and I am hating every minute of it! On 30 mg right now, came down from 60 mg and it;s really great when you have these crazy munchies but go to eat and then you are in pain!!! Urghhhhhh! Very frustrating, but sometimes as you take them the side effects lessen so hang in there...at first I couldn't sleep but its better now...sorry you have to be on this dreaded drug!!
02-21-2012, 04:16 PM   #4
tiloah
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I tried to avoid Prednisone as long and as much as I could. I ended up with a C. diff infection and an abscess that required surgery and I think avoiding steroids for so long definitely contributed to that. Prednisone can be a good and effective drug when it is necessary.

I'm sorry you had such an awful experience. I hope if you ever need to take Pred in the future that this was a one time extreme reaction and your body is able to adjust in the future. The sleeplessness is a common reaction, but I suspect the itching had more to do with how it was formulated. It might be worthwhile to make a note of what company made the pred you took and what pharmacy you got it from.

I hope since you are discontinuing the Pred that you find a treatment that is effective and comfortable for you.
02-22-2012, 06:34 AM   #5
SnowDay
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I tried to avoid Prednisone as long and as much as I could. I ended up with a C. diff infection and an abscess that required surgery and I think avoiding steroids for so long definitely contributed to that. Prednisone can be a good and effective drug when it is necessary.

I'm sorry you had such an awful experience. I hope if you ever need to take Pred in the future that this was a one time extreme reaction and your body is able to adjust in the future. The sleeplessness is a common reaction, but I suspect the itching had more to do with how it was formulated. It might be worthwhile to make a note of what company made the pred you took and what pharmacy you got it from.

I hope since you are discontinuing the Pred that you find a treatment that is effective and comfortable for you.
Thanks diesanduhr. I have a friend who has Crohn's and he takes entocort instead, he reckons it does the same job but without the side-effects because it dissolves in the gut (i think). So i might try that next.
02-22-2012, 07:52 PM   #6
tiloah
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Entocort is a good drug but it depends on where your inflammation is whether or not it will work for you.
03-17-2012, 07:33 PM   #7
SnowDay
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So i've been on entocort for a little less than a week now. I am going thru a majorly painful flair at the min. and nothing, including the entocort seems to be helping at all. The only relief I seem to get is when I don't eat anything, before it was just some foods but now if I eat anything, my skin breaks out within a few hours. I am really terrified, what am going to do? Starve to death? I need a miracle or divine intervention or something.
03-17-2012, 10:52 PM   #8
tots
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Snowday- Bentyl helps incredibly well. Last month I was in the hosp for a week. The IV meds and Iv fluids really helped. I was put on Entocourt because of the location of the flare(?) I think it helped that I was kick started with IV steroids every 6 hours for 1 week before oral steroids were started. Its VERY expensive (bentyl is not- its for mucosal muscle cramping) $1400 until they ran it through my ins co. then it was $10. I have no doubt if I hadnt gone to the hosp when I did I would have gotten much worse!
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03-17-2012, 11:13 PM   #9
Irene3
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SNOwDAY....sounds bad! I couldn't eat coming off Pred, then going back on for the most part, and flaring I had no appetite regardless if Pred settled the pain a bit. I hit borderline anorexia, and hit the terrified stage your in now? 'will I starve? Will I faint because I have NO nutrion?... So I went on sustagen hospital formula (not sure if it's called the same in the US), and slowly, but surely, it got my weight back to now almost normal range for my height. I have constant distention, but still carry Pred bloating on 30mg, but I notice in my arms ang legs its helped immensely.
I still want entocort the next time I flare, and after this 'stricture' gets sorted. I HATE Pred, and 25 is very low, but avoid it when you can, because after many doses, over a period of time, it can really have adverse side effects. Not just physical, joints, sleeplessness, energy levels fluctuating like mad, but psychologically over time as well. But 5 days is ok, you'll be back to norm in no time
03-19-2012, 09:51 AM   #10
SnowDay
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Thanks for the encouragement Irene and tots. Tots, what is bentyl? Is it an antihistamine? I've never heard of it.
03-19-2012, 01:39 PM   #11
Astra
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You're thinking of Benadryl Snowday

here's a link on Bentyl
http://ibdcrohns.about.com/cs/bentyl/a/bentylfaq.htm

Amitriptyline has helped my spasms, you could try this, talk to your GP about options
xx
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03-19-2012, 05:41 PM   #12
SnowDay
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You're thinking of Benadryl Snowday

here's a link on Bentyl
http://ibdcrohns.about.com/cs/bentyl/a/bentylfaq.htm

Amitriptyline has helped my spasms, you could try this, talk to your GP about options
xx
thanks
03-22-2012, 05:31 PM   #13
SnowDay
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Well, good news. The Entocort has kicked in, took 6 days to take effect. But I am enjoying reduced pain/inflammation, a wider array of foods and beautiful, beautiful sleep , along with precisely 0 side effects.

My GI told me that it's only temporary tho, That I can only stay on it for a few weeks, then it's back to her clinic for immunotherapy (a kind of vaccination against food as I understand it, for people who are super sensitive).

My results came back on the blood-work/stool sample that were sent off and apparently my body is in pretty good shape overall. The biggest problem is that I have an extremely small amount (virtually none) of secretory IgA, which as I understand it is the the first line of defense of the GI mucosa and is central to the normal function of the GI tract as an immune barrier.

This was caused by malnutrition/malabsorption/not enough good bacteria and having a very low BMI (i'm pretty freakin' skinny).

Anyway hopefully this treatment works and I can get back onto a balanced diet to build myself up and get a good cycle rather than a destructive one going. I'll keep you updated. Thanks again for the support, everyone .
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