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01-28-2014, 06:12 AM   #301
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I never felt angry or depressed on pred, but I felt abnormally euphoric (which wasn't as good as it sounds, since being high for no reason other than a drug was extremely disconcerting) and incredibly bored and restless.

This was then combined with the Amitriptyline I began taking - the Amitriptyline got rid of the insomnia and restlessness the pred had caused, but it also causes me extreme anxiety, and I felt constantly terrified - I had this impending but abstract sense of doom, I felt something terrible was about to happen even though I couldn't even begin to pin-point what is was I believed to be coming, and combined with euphoria I generally felt this overwhelming mix of fear and excitement about whatever it was I thought was about to happen. And for some reason I began being afraid of the dark just like I had done as a kid.

Once I came off the pred my emotions went back to normal. I still take the Amitriptyline and it still causes me anxiety, but nothing like the surreal fear I felt when taking prednisone (though weirdly I sometimes miss the perfect combination that the two meds together caused).

Did anyone else get this anxious? Anger and depression seem to be the more common mood swings to be caused by pred, and mania is always mentioned in the side-effects leaflets, but it's hard sometimes to know which mental symptom best describes the emotions you're actually feeling.

It helps to keep reminding yourself (and people around you!) that it's the med making you act this way.
01-28-2014, 06:26 AM   #302
Amanda89
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So far I'm not sure it's helping me much as I still have a stricture, which is really tight after every meal and causing me a lot of discomfort. I'm still getting some flare ups, so the jury is out on whether Pred is effective for me at all yet
I'm in the same boat with you on that one. I'm still in a lot of pain, but I have my 2nd Infliximab treatment next Tuesday so I'm hoping I might feel better after I've had that. It could still be early days for the Pred kicking in for you, have they had a look at your other medication to see if its worth changing any of it to help?
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01-28-2014, 08:36 AM   #303
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I'm in the same boat with you on that one. I'm still in a lot of pain, but I have my 2nd Infliximab treatment next Tuesday so I'm hoping I might feel better after I've had that. It could still be early days for the Pred kicking in for you, have they had a look at your other medication to see if its worth changing any of it to help?
I'm not really on anything else at the moment. Things like buscopan never seems to work. I have taken tramadol the last couple of days and that really helps mask the pain, self prescribed though! I see my consultant on Thursday so hopefully will have a plan for me
02-03-2014, 03:52 AM   #304
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So tomorrow I taper down to 30mg, feel like I'm slowly getting there! I've noticed the swelling in my neck has gone down a bit, still got lovely moon face, I think my appetite is finally starting to go back to normal, BUT insomnia has well and truly kicked in. Didn't fall asleep until 5am this morning and had to get up at 6.30am for work. I have a feeling this is going to be a long day...
02-09-2014, 03:16 PM   #305
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Hi, I have been on pred for two weeks now and I so hungry all the time which is a good thing I guess for me but not for the rest of the family whose food I keep pinching!!

Im also getting the mood swings and ache which a lot of people seem to get so I don't feel so bad now.

However, I am in a lot of pain with my lower back? Is this common?
02-09-2014, 04:58 PM   #306
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I agree about the chipmunk thing. That is always what I liken my appearance to when talking about my life on Prednisone. It helps to have understanding people in your life. My mom should have been but wasn't (all the best intentions meant of course). I felt like a crazy person trying to explain to her that I hadn't been eating too much or gained a bunch of weight and that it had everything to do with the medication.

I tell you what, I' don't miss those days. I'm so glad to be mostly medication free. I don't ever want to go back to that.
02-09-2014, 10:00 PM   #307
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Hello again, I only wrote on here a few posts back but Im starting to get really worried about what the pred is doing to me! I am on 40mg a day and have been for two weeks and within this time I have started getting ache, weight gain and back back pain! However the last two days I have noticed that my ankles and wrists are starting to hurt a lot to the point that I couldn't open my own drink and nearly fell down the stairs because me ankle have way!
Im really not sure whether this is the meds or Im being paranoid. This sounds pathetic but I feel so guilty about complaining to my parents constantly that I cant bring myself to tell them about these new pains!

Any help would greatly appreciated and Im getting my self into a bit of a stress
Many thanks
02-10-2014, 08:55 AM   #308
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It's almost certainly not you being paranoid. When I was on higher doses of Prednisolone, all my joints ached. I sometimes had to go down stairs sideways like a crab because I couldn't bend my knees and ankles.

I know this probably sounds silly but try not to stress about it. Hopefully the Pred is helping your gut, although it is causing you these other problems.
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02-10-2014, 09:15 AM   #309
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Glad to hear its not just me! I just didn't expect the medication to make such a big impact in such a short time. It is definitely working though, not having to go to the toilet all the time which is a big bonus, just a shame about the other effects.

Stressing is my big weakness! I really need to work on just taking one day at a time
02-10-2014, 09:22 AM   #310
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Good to hear that it is having a positive effect on your gut.

Perhaps you could try gentle yoga or meditation. Even alternate nostril breathing might help to calm you; you can do that anywhere and nobody would know.
02-10-2014, 09:37 AM   #311
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Yoga sounds like a good suggestion!
02-11-2014, 02:07 PM   #312
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I get moon face and increased schizophrenic symptoms from pred, but it works for me, so I accept it.
02-11-2014, 05:06 PM   #313
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I was the same first 2/3 weeks were bad, i felt like an old man all achey. I slept badly as well. But I am now down to 20mg a day and I haven't had a flare up in over a week, I've slept well and am feeling the most comfortable I have since before Xmas. SO stick with it and I hope it helps improve things in the long run for you
02-13-2014, 10:05 AM   #314
Amanda89
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So can I ask..where is this burst of energy I keep hearing people get on the pred? 5 more weeks to go of this horrible yet amazing drug!
02-14-2014, 05:36 AM   #315
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So can I ask..where is this burst of energy I keep hearing people get on the pred? 5 more weeks to go of this horrible yet amazing drug!
As far as I can recall (I haven't had to take pred for some time now), the energy was not absolutely immediate, but took a couple of weeks to fully kick in. I also remember that it wasn't sudden, but increased steadily over that time. But it has different effects on everyone, so you might not get the energy. How long have you been on it for?
02-14-2014, 09:39 AM   #316
Amanda89
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I've been on Pred for 12 weeks now with a break inbetween for about 4 weeks where I was switched to Budesonide, but that only made me worse so they just put me back on pred.
02-14-2014, 12:52 PM   #317
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So can I ask..where is this burst of energy I keep hearing people get on the pred? 5 more weeks to go of this horrible yet amazing drug!
I didn't really get it. I did… but my insomnia was so severe that instead of just taking off, I kind of did a burnout instead.
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02-14-2014, 10:38 PM   #318
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Hi all,
Took a few weeks but I experienced "bundle of energy" as well as many other lovely symptoms. Have been on pred for about a month. Started 40 increased to 60 back to 40 now on 30.
Can't wait to be off.
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02-14-2014, 11:11 PM   #319
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I was on Predisolone for 25 years but didn't ever experience any "burst of energy".
02-15-2014, 10:01 AM   #320
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I've been on Pred for 12 weeks now with a break inbetween for about 4 weeks where I was switched to Budesonide, but that only made me worse so they just put me back on pred.
I think if you were going to get energy it would have begun by now.
02-15-2014, 03:11 PM   #321
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I'm on pred, tapered down to 25 mg now from 40 mg. At first, I felt like a super hero. I woke up everyday loving life, I never felt better, I was always happy. This was great because before pred I experienced a lot of anxiety and depression. I never felt better! However, after awhile, and tapering down and whatnot, it begins to feel old. I feel euphoric all the time. It's like I can't feel anything but what the pred makes me feel. I'm always really hyper, can't concentrate, breathing fast, always got to be walking around or busy doing something, it's difficult. Now I just feel drained. It's like i'm a energizer bunny but at the same time I feel emotionally and physically drained. I also can't sleep all night long without waking up. I usually wake up a couple of times. I also have the munchies like crazy, but oddly I've lost about 10 pounds which is a lot from me, probably from being sick in the hospital last month. I was on Imuran too, but one week into taking the imuran I woke up after being asleep for a couple of hours shaking out of my skin. I couldn't stop, it was crazy, I was so cold and I had the chills. Then, I started getting a really bad fever, I was so red in the face it was abnormal looking, my heart rate went up to 130, I couldn't see straight, everything was cloudy and I could hardly walk or anything. It was scary and came on quick. I went to the ER and they done a bunch of tests and said everything came back normal and they don't know what's causing it and sent me home. Called my GI in the morning and she said it could be the imuran, to stop taking it for a week, and then start taking it to see if I get the same symptoms again. So I'm due to start taking the imuran again tomorrow.. I hope I don't get sick again like I did last time! Oh the joys of living with Crohns... boo. Lol!
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02-17-2014, 03:48 PM   #322
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I hate the pred but it did make me feel better. However now when I get angry about something my husband automatically thinks it is the meds rather than him doing something stupid. Very frustrating. Just started a very slow taper and expect to be on it a few more weeks. The eating is out of control and with a very limited diet right now I find myself eating large amounts of high carb foods. I'm feeling good enough to start exercising again and hopefully that helps. My Crohns as an adult hasn't kept weight off. Unlike others I was already carrying a lot of extra weight. Despite 10 weeks of barely eating the weight hadn't decreased. If I have to be so sick, I would at least like losing some weight. I try to remember 30 years ago when I only weighed 83 lbs and couldn't gain weight no matter how much I ate. Neither way is good. Just hoping I don't gain a lot more while on Pred. Thanks for letting me vent!
02-17-2014, 04:17 PM   #323
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Thanks to prednisone I can walk again, sure the joints hurt and I feel a bit euphoric, anxious, hyper, bummed, sick to my stomach... but I can walk! Love hate it
02-17-2014, 06:17 PM   #324
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On a prednisone taper, almost done, then wham! Flare, back on 40 mg again. The crazy lady is back!
02-18-2014, 05:28 AM   #325
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The eating is out of control and with a very limited diet right now I find myself eating large amounts of high carb foods. I'm feeling good enough to start exercising again and hopefully that helps. My Crohns as an adult hasn't kept weight off. Unlike others I was already carrying a lot of extra weight. Despite 10 weeks of barely eating the weight hadn't decreased. If I have to be so sick, I would at least like losing some weight. I try to remember 30 years ago when I only weighed 83 lbs and couldn't gain weight no matter how much I ate. Neither way is good. Just hoping I don't gain a lot more while on Pred. Thanks for letting me vent!
If you're interested, I'd really like it if you could check out the thread I started here: http://www.crohnsforum.com/showthread.php?t=60048 While many of us with Crohn's struggle to gain weight, you are far from alone in being someone who struggles to lose it. Prednisone, malabsorbtion, lack of appetite, being unable to eat "healthy" foods due to fibre... there are a lot of things that make people with Crohn's liable to have weight issues. I started the thread because I struggle to gain weight and wanted to get an idea of how closely our diets determine our weight and how much it is complicated by other issues - such as prednisone causing weight-gain.
02-19-2014, 08:04 PM   #326
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On a prednisone taper, almost done, then wham! Flare, back on 40 mg again. The crazy lady is back!
This is my life on prednisone, I can never tapper out of it without my crohn flaring up. Sigh...
02-19-2014, 08:20 PM   #327
Susan2
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This is my life on prednisone, I can never tapper out of it without my crohn flaring up. Sigh...
I had 25 years like that - only stopped when I had a total proctocolectomy! Life has been much better since.
02-21-2014, 08:54 AM   #328
Amanda89
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Out of interest, at what dose did you all find the hunger start to subside?
02-25-2014, 10:48 AM   #329
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Out of interest, at what dose did you all find the hunger start to subside?
For me it started to drop once the dose got to about 20mg but I'm on 10mg at the moment and still have the odd day when I'm really hungry.


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02-26-2014, 01:43 PM   #330
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Hi everyone! Anyone have an issue w weight gain, that one gains while on prednisone, that hasn't come off since been off it? I still feel bloated, face has gone down a bit but weight not changing
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In the midst of my first flare in 13yrs
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