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12-07-2010, 11:01 PM   #1
BLM
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Prednisone sucks!!

So, Im on 30mgs of pred, stated at 50 and have been tapering for the last few weeks. Ive had an amazing amount of energy and have been doing pretty well until this past weekend. Ive never been on Pred before so Im adjusting to all the wonderful side effects. Ive gained 20lbs of pred weight, Im round, my skin is constantly sweating, my mouth feels gross....but Im dealing with it. Well, yesterday and today....I am in serious PAIN. My bones hurt so deep, sharp throbing and Im super shaky today. Is this normal....and if so, how long will I have to deal with this. Any tips help, pain meds arnt doing much for the pain. I hurt really bad inbetween my ribs and down in my flank. The flank pain is consistant with my disease, but the rib pain and bone pain is not. Any input is very appreciated. Thanks friends~
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Diagnosed Crohns Disease March 2010, suffering for 15 years


Prednisone
Remicade
B-12 injections 2xmonth
Daily vitamin
60 mg Lansoprazle
Celexa

As Needed:
.25 Xanax
Percocete
Hysocycomine
Phenergan
Zofran

Last edited by tiloah; 09-26-2011 at 12:05 PM.
12-07-2010, 11:52 PM   #2
nogutsnoglory
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I got extremely fatigued to the point that it was disabling from being on the same dosage as you and tapering off. I also had bone pain and got a scan which found I have osteo-penia which is pre-osteoperosis. Crohn's patients are at an increased risk for bone issues and steroids destroy the bones further.

I would get off the steroids as fast as you are able to handle and with your doctors recommendations. It is going to be a trip to recover but getting off pred was the best thing I ever did! I still regret taking that crap.
12-08-2010, 02:31 AM   #3
IBD
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Most of this seems pretty common, to m eat least. Try to get off prednisone as fast as you can, as mentioned above. I was on prednisone for a few months after my diagnosis and was taken off and I've never dealt with half the stuff that is happening to users on this forum. I would take this option into consideration.
12-08-2010, 10:40 AM   #4
kayvank
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Im on prednisone right now. Been on it for about 5 months. Just had surgery done over a week ago. Im on 40mg/day, but tapering each week. I cant wait to get off this crap. Sick of it. I feel tired all the time, dont know if it was because of the crohns. Im shaky and feel weak. Ready to get off of it. Taper down to 30mg/day tomorrow
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Crohns Disease
Diagnosed: March 2010

Surgery:
Orginally Dec 13, 2010, but due to perforation and abscess I had it done Nov. 27
(Ilium cecum resection/appendix and abscess removed)

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12-08-2010, 11:56 PM   #5
georgiegirl
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I'm pretty much at the same point you are. Gross mouth, moon face, sweating constantly (was wondering if I've hit menopause at 32!), joint pain etc etc. I'm at 35mg now, tapering 5mg per week. Having said that though, when I do feel good, I feel GRRREAT!!! Have so much energy, and my house has never been so organised. But if I over do it, I get the shakes real bad and feel very weak.

I'm just waiting for the taper to be over. Hopefully I won't have any problems getting off it, though many seem to really struggle.

Sorry I can't tell you how long this will last, but at least you know you're not alone!
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Diagnosed: August 2010.
Currently on:
Remicade every 8 weeks
6-MP (150mg / day)
Tried:
Humira - worked for 6 months then just stopped
12-09-2010, 04:17 PM   #6
robbo87
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I haven't been on pred for nearly a year but when i was i also started on 40 mg so i can sympathise with the trouble your having with the side effects. It really does work wonders which is why its so unfortunate it causes all these extra problems!

Have you not been given any vitimin d supplements to take along side the pred to protect your bones? I was given Adcal D and got told it was very important to prevent things like osteoperosis.
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ileostomy, colostomic mucus fistula stoma. gastostromy after recent surgery

tried, prednisolone, pentasa, azathioprine and infliximab
12-09-2010, 05:52 PM   #7
BLM
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Join Date: May 2010
Thanks guys!! Yes the good days are GREAT, but this side effects suck. I stated vit d and calcium suppliment and it seems to be helping a bit. Still having ups and downs....but lovin my ups. My house is in order and my kids are loving thier mom back. I did notice a twinging pain in my left ab area...the pinching twinging pain I usually get on my right side...so thats been causing a bit of anxiety today. Otherwise Im looking forward to tapering down more soon.
12-09-2010, 06:28 PM   #8
lynx
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cant stand it either..started at 60mg IV in the hospital then went to oral and tapered down to 30mg then back up to 40 for two weeks then back down to 30mg for going on two weeks now...cant wait to get off it...weakness, insomnia, moody, sweating, weird feeling skin on my face (it got more oily, and there are zits now..yay!) , moon face....i asked my GI about diff symptoms and he said most of what you are talking about is because of the prednisone. I probably am going to be on the 30mg another week and then go down to 25mg. I dont know what the pain on the side could be? I would talk with the doctor or maybe the pharmacist about that to see what they say.
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12-10-2010, 08:19 AM   #9
meardonna
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been on and off steroids since easter. they good as they giving me some sort of life but the side effects are awful! my face is chubby, i get shaky, up and down mood wise, and I ache all over. consultant keeps pushing surgery. if aziaphrrine fails I'm going to jump at it!
12-14-2010, 11:23 PM   #10
nogutsnoglory
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Im on prednisone right now. Been on it for about 5 months. Just had surgery done over a week ago. Im on 40mg/day, but tapering each week. I cant wait to get off this crap. Sick of it. I feel tired all the time, dont know if it was because of the crohns. Im shaky and feel weak. Ready to get off of it. Taper down to 30mg/day tomorrow
I think it's a combo. I was extremely fatigued and it got much better months after I stopped pred. I am still fatigued but there are 2 additional factors besides pred. 1. iron deficiency. 2. medical fatigue which just comes as a natural part of this shitty disease.
02-17-2011, 10:48 AM   #11
mkhopper
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After a blockage in January, they had me on heavy Prednisone while in the hospital and then upon release, started on 40mg a day for one week. From there tapered to 30mg for one week and was scheduled to drop to 20mg, but almost immediately the problems started after dropping to 30.
Quite a bit of bleeding and plenty of pain.

Doc suggested quickly bumping back to to 40mg a day and will stay there for two weeks then drop to 35mg. I'll be on the 40 for another 10 days or so.

Within a day, bumping back up to 40 stopped the bleeding but ever since that time, I can't eat anything without feeling completely miserable. Switched to a (mostly) low-residue diet and trying to stick with it as much as I can, but even after eating things like soup or rice, maybe a piece of white toast, for hours afterward there's just a feeling of, "why did I bother?" Made worse when after those few hours, hunger pains start in. "Give me more so you can feel lousy again!"

It's a constant vicious cycle of being in what I call my normal downswings. Not quite a full flare up, but feeling like on the edge of one.

From reading this board and other medication sites, it seems that it's most likely due to the prednisone. Does anyone here have any suggestions of what to do to possibly calm things down a bit?
09-24-2011, 10:32 AM   #12
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I get the same symptoms too, it sucks yeah
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No Colon = No drugs but loads of other stuff now though.
09-24-2011, 11:39 AM   #13
meardonna
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just an update since my last post o this thread was a long time ago. I had surgery in may, been off all meds, got my life back, feel amazing, fat face has almost fully gone, been swimming, canoeing, camping, climbing, hiking, if you get the chance oif surgery don't be scared! it can be the best decision EVER!
09-24-2011, 06:05 PM   #14
tiloah
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just an update since my last post o this thread was a long time ago. I had surgery in may, been off all meds, got my life back, feel amazing, fat face has almost fully gone, been swimming, canoeing, camping, climbing, hiking, if you get the chance oif surgery don't be scared! it can be the best decision EVER!
This is fantastic! I hope it stays that way for a very long time! Maybe think about posting a thread in our Success Stories forum?
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