The Miserable Prednisonites Club

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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.
 
Plissken said:
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
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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?
 
Amanda89 said:
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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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
 
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...
 
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?
 
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 :runaway: 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.
 
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
 
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. :hug:
 
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:)
 
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. :)
 
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
 
Amanda89 said:
So can I ask..where is this burst of energy I keep hearing people get on the pred? :shifty: 5 more weeks to go of this horrible yet amazing drug!
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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?
 
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.
 
Amanda89 said:
So can I ask..where is this burst of energy I keep hearing people get on the pred? :shifty: 5 more weeks to go of this horrible yet amazing drug!
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I didn't really get it. :p I did… but my insomnia was so severe that instead of just taking off, I kind of did a burnout instead.
 
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.
 
Amanda89 said:
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.
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I think if you were going to get energy it would have begun by now.
 
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!
 
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!
 
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
 
:ylol:
On a prednisone taper, almost done, then wham! Flare, back on 40 mg again. The crazy lady is back!
 
STORMY5769 said:
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!
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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.
 
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 :ymad:
 
long time crohnie said:
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 :ymad:
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I've not had this problem myself, but as far as I know besides the little increase in weight caused by water-retention the rest of the weight you put on comes from eating more due to the increase in appetite pred causes. So coming off pred won't result in weight-loss unless you cut down the amount of calories you're consuming, just like with ordinary dieting. How long have you been off prednisone? Has your appetite decreased since you came off it? If your weight was stable before you started pred, presumably you'll need to eat a diet lower in calories than that which you were eating prior to the prednisone course in order to lose some and get back to your original weight.
 
Thanks UnXmas. I am off all the pred now, and I don't crave food anymore like when I was on it. You're right re need to adjust my diet, which I have somewhat, to lose the extra weight, but I also became very idle. When I don't feel good and have chronic D, I tend to just lay around. This last bout I didn't have any pain relief so I was on the couch a lot. This is my issue w the weight gain I believe. What sucks now is how freakin cold it is where I live right now that I'm not wanting to go out and take a walk and get moving to help get some of this weight off! It also doesn't help that everything healthy to assist in losing weight ie; fruits and veggies, kill me!! Sorry for the rant. Just frustrated :mad:
 
Hubby just called me @ work and said his GI called him in prednisone for his current flare I'm like really did he not remember what happen the last time he gave you prednisone:angry-banghead:
 
long time crohnie said:
Thanks UnXmas. I am off all the pred now, and I don't crave food anymore like when I was on it. You're right re need to adjust my diet, which I have somewhat, to lose the extra weight, but I also became very idle. When I don't feel good and have chronic D, I tend to just lay around. This last bout I didn't have any pain relief so I was on the couch a lot. This is my issue w the weight gain I believe. What sucks now is how freakin cold it is where I live right now that I'm not wanting to go out and take a walk and get moving to help get some of this weight off! It also doesn't help that everything healthy to assist in losing weight ie; fruits and veggies, kill me!! Sorry for the rant. Just frustrated :mad:
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It is possible to lose weight without exercising. I lost a lot of weight (that I really didn't need to lose!) when I was recovering from surgery and in bed all day for months. But to do so you need to eat even fewer calories. Not always easy, I know, but perfectly possible - you will lose weight if you eat little enough even without exercise.

I have to eat low-fibre too, and I have noticed that avoiding fibre goes very well with my need to gain weight (I have the opposite problem and am underweight), so I can see how attempting to lose weight and avoid fibre must be very difficult.

Avoiding fibre does mean avoiding much fruit, veg and whole-grains, but there are some low-calorie things you can eat. I've been struggling to find fruit and veg that I can tolerate with my ileostomy, and have found a few good, low-fibre options:

Bananas
Avocados (not the lowest calorie food, but very healthy)
Tinned fruit
Very well cooked veg - carrots, broccoli, and sprouts I seem to tolerate well.
Smooth vegetable soups - there are plenty of other kinds of low-calorie soup too.
Potatoes (without skin)

I know whole-grains are mostly high-fibre, but the refined white versions - white rice, white bread, pasta, etc. don't seem to vary much in the calorie content from the whole-grain, brown versions.

Low-fat yoghurt, cottage cheese, white meat (chicken, turkey, etc.) and fish may make good low-calorie options too.

I'm not sure if this helps you much; I've had to study calorie contents of foods a bit in order to help myself gain weight, but I reckon the information is useful for those trying to lose too. And although I need to gain weight, I still need fruit and veg in my diet so I've been searching out low-fibre fruit and veg options.
 
That's just what happened to me. I was average weight when I first went on prednisone. One time I was on it for a long period, and the weight that I gained stayed with me for years. I call it my "reserves". It payed off when I had a really bad flare and lost almost 60#. Now I am average again, maybe slightly under weight. I get really pissed when people tell me I look good. That's great, I'm sick but I'm pretty.
 
Anyone have a rash while on prednisone? I'm on 20mg right now and I've got a rash on my legs, arms, tummy. Not really itchy just annoying...
 
Thank you to all those who provided some suggestions and understanding. UnXmas I truly appreciate what you do on this site, the other moderators as well. I really try to not be upset w the weight gain because like many others I used to struggle to keep weight on for years. I'm just quite surprised this time around with how much and the muscle atrophy. Guess this happens when we get older, and like a supporter said, I now have a reserve :smile: I'm a singer in a band and to quote one of my favorite songs I sing by Alanis Morsette " I'm sick but I'm pretty, baby"!!
 
Can prednisone make you feel shaky? I was using the paper cutter at work today, and my hands were shaking. It made me a little nervous.
 
I can fully empathise with you on that Amanda89, my last stint was for 11 weeks, with all those delightful side effects you start to wonder if you will ever get back to normal, or lets say what is normal for us Crohnies.
 
What about weird dreams? I have been having the weirdest dreams the past few nights. Anyone else have strange dreams on pred?
 
mama21princess said:
What about weird dreams? I have been having the weirdest dreams the past few nights. Anyone else have strange dreams on pred?
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I generally have quite weird dreams haha, I have noticed I've been having more nightmares while on pred though..I also had a dream last night that Matt Willis from Busted asked me out on a date :p
 
I am still at 50mg and am so relieved I've gotten 5-6 hours of good sleep each night. The images in my head as I fall asleep or wake up as crazy vivid though. I was trying to get to sleep last night and picturing all kinds of fancy elaborate clocks. I go to 40mg today. My GI promises a "decrease in anxiety" at 40. An "increase in sanity" in general would be nice!
 
Back on pred for the last 3 days (40mg) ,still feeling like crap and just had a bad nightmare , the prd I'm taking is at least 12 months old ,would this affect its potency ?
 
I really hate this stuff. It makes me so tired, but then I don't sleep well with all these strange dreams that keep waking me up. I'm starting to feel a little cranky, so the next person that tells me what I should or shouldn't eat might get punched.
 
Well after starting to slowly taper down the pred, I have gone back up to 35mg as all my symptoms started coming back. Feeling better in general but the side effect of joint pain has returned!

Im currently laying in bed with pain in both knees and ankles and debating whether its going to cause me more pain to go for have a walk around or not! Dilemma!
 
Well, I'm back inthe club after another two weeks in the hospital. I think the plan is 60MG to start and taper down, with a slow migration onto Humira once the second bout of pneumonia is fully resolved.

No side effects yet, as it's only been a few days, but I've been getting IV steroids for about two weeks now and just switched to orals. I expect the swelling to start soon, but thankfully the inflammation appears to be getting back under control.

I'm hoping for a relatively short taper this time, rather than the eight plus months I was on Pred last time.
 
Week 3 on Pred- 1st dose=20 minutes of euphoria.
I have it with my breakfast and an hour later it's like I've been given a sleeping pill. Anybody else have problems with Pred making them a comatose heap.
And the tantrums! My God, it's turned me into an animal. Things don't fit properly, like jar lids- scream obscenities at them, key won't fit in the door- scream obscenities at it, run out of toothpaste, scream obscenities at the empty tube for wasting your time.... this stuff has helped my condition but from being Mr. Placid, Laid Back, No Worries to a green beast ripping my my shirt off complete with scary eyes- when it hasn't made me slump to the floor like an opium fiend.

Where's my @#$*in' wallet and keys !@#$in' gone....

....OOOOOH- GOODNIGHT THEN....
 
Oh Dackelmann I have not had such a good belly laugh like that for ages, you certainly nailed the side effects of that drug perfectly, that's exactly how I felt last time I was on Pred!! Don't you pity the poor buggers that have to put up with our horrid little tanties for however long we are on it. Hope things get better for you soon.
 
I totally laughed out loud too! Exactly! I'm down to 20 and see puffiness in my face. Could it get worse from here?
 
How about those massive pubescent pimples forming on the inside of my nostrils- what's that about?- I've been verbally abusing them and hence myself in the bathroom mirror. Why did I leave the gas oven on for two days? Don't I love my partner and our two adorable dachshunds enough?
 
Can't help with the gas oven, but I am pretty sure that the pimples aren't divine retribution for anything. Sounds evil, though. I am pretty sure that amputation wouldn't help, so try the oil cleansing first.

What does the doctor say?
 
I finished my Pred a few days ago. I am a success story! If you have seen my earlier posts, things were bad for me. The high dose was a nightmare and I felt worse than ever. Today I met with the surgeon.......My scan results show my stricture has healed and all the inflammation is gone! I have felt healthy for a few weeks now with no flare ups. So no surgery needed for me and long may my good health continue!

For those who are still struggling, don't give up! if it can work for me, it can work for you just stick with the treatment. I am doing better now than I have for two years thanks to Prednisolone and a change in diet
 
What change in diet @Plissken ? So glad to hear a success story. I'm down to 20mg and having a lot of pain that I assume is from an abscess that hasn't healed. Feeling kind of defeated!
 
I am having the hardest time tapering off of prednisone. I started at 60mg in December & every time I get down to about 20mg my symptoms come back almost immediately. Has anyone else had this issue?
 
Nancye50 said:
What change in diet @Plissken ? So glad to hear a success story. I'm down to 20mg and having a lot of pain that I assume is from an abscess that hasn't healed. Feeling kind of defeated!
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For about a month I lived off rice, fish, chicken, white bread and rich tea biscuits! Just to allow my guts time to heal, basically low fibre/low res foods
 
I have to say pred is nothing like I expected. I'm 3 weeks in to a 35mg dose. I have awful back pimples but that seems to be the only negative. I am otherwise feeling an overwhelming love for life and like there is not enough time in the day to enjoy things. The Paxette is loving how many chores I'm doing. I'm struggling to sleep, but I just don't want to sleep rather than can't sleep. When I finally get tired I sleep like a rock. I've not been angry or moody once so far. I've put on a tiny bit of weight and my face is rounder but I was hoping for a bit more weight gain. I'm way too skinny. The one thing I can't stand is the taste of the tablets if you are too slow to get water in your mouth.

But over all I have to say I love being on it. Is that weird??
 
A trick I learned when I was young and had to take prednisone for asthma is to wrap the tablet in bread. It covers it so you don't have to taste it, but it doesn't interfere with the med. I learned that fom a pharmacist.
 
Paxxy said:
I have to say pred is nothing like I expected. I'm 3 weeks in to a 35mg dose. I have awful back pimples but that seems to be the only negative. I am otherwise feeling an overwhelming love for life and like there is not enough time in the day to enjoy things. The Paxette is loving how many chores I'm doing. I'm struggling to sleep, but I just don't want to sleep rather than can't sleep. When I finally get tired I sleep like a rock. I've not been angry or moody once so far. I've put on a tiny bit of weight and my face is rounder but I was hoping for a bit more weight gain. I'm way too skinny. The one thing I can't stand is the taste of the tablets if you are too slow to get water in your mouth.

But over all I have to say I love being on it. Is that weird??
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It's not weird, but in my experience the negative side effects take a few more weeks to start to present (if the do so). Just be cautious. The manic high can be overtaken by the downside effects, but overall Pred can do wonders to help, short term, to get a flare or symptoms mostly under control.
 
mama21princess said:
A trick I learned when I was young and had to take prednisone for asthma is to wrap the tablet in bread. It covers it so you don't have to taste it, but it doesn't interfere with the med. I learned that fom a pharmacist.
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I use applesauce. Only thing that works for me, for whatever reason. No apparent impact on effectiveness either.
 
A fun prednisone story!

I was on it from April 2013-September 2013. During that time I was just starting to get to know a guy online. We hadn't met when I started going through the bloated, acne, and insomnia of the high, prolonged dose.

When I wasn't sleeping at night, I would stay up late and send him emails about whatever I happened to be thinking about. They were completely random.

We did meet while I was looking most.... charming? from all the side effects of prednisone, and ate what appeared to me to be my weight in sushi. And snorted tea out of my nose on a first date.

I continued to send him long and random emails when I couldn't sleep. He said he really liked reading them, but didn't like seeing them in his inbox as he knew I wasn't sleeping again.

We're still together. Even though prednisone made had made a mess of me when I met him. He really is awesome!
 
I can't take these side effects - headache, mood swings, sleepless nights , rapid heartbeat. I don't know how you guys are doing it. I'm only on 20mg daily - I see some of you are at a much higher dose. I have a doctors appt. on Thursday with my primary care doc not my GI , he never wants to see - only like twice a year. Anyways I have to stop taking this prednisone and will tell my doc on Thursday. Can anyone just not take this drug ? Is there something else I can take instead ?
 
Hi Zeppy321, sorry to hear that you are having such a tough time with the prednisone. Who prescribed them for you? Was it your GI or primary care doc. If you have been having a flare the steroids are usually the only thing that will bring it back under control, has either of your Drs discussed any other maintenance drugs with you, as you need these to help bring a balance and get you into remission. I hope things improve for you soon. Theresa.
 
Thanks Theresa. I take aza 100mg daily. An Er doc precribed the pred he said my blood work says I am in a current flare. I don't know if I'd rather be in pain or have these awful side effects from the pred. Honestly the pain seems better at this point.
 
Dackelmann said:
Week 3 on Pred- 1st dose=20 minutes of euphoria.
I have it with my breakfast and an hour later it's like I've been given a sleeping pill. Anybody else have problems with Pred making them a comatose heap.
And the tantrums! My God, it's turned me into an animal. Things don't fit properly, like jar lids- scream obscenities at them, key won't fit in the door- scream obscenities at it, run out of toothpaste, scream obscenities at the empty tube for wasting your time.... this stuff has helped my condition but from being Mr. Placid, Laid Back, No Worries to a green beast ripping my my shirt off complete with scary eyes- when it hasn't made me slump to the floor like an opium fiend.

Where's my @#$*in' wallet and keys !@#$in' gone....

....OOOOOH- GOODNIGHT THEN....
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I have Aspergers Syndrome so I can throw some pretty awful tantrums anyway but since I started on pred again they seem to have got so much more frequent. I pity my poor mother for having to put up with me.

I'm currently on 10mg as I'm hoping to be taken off the drug soon but my gastroenterologist didn't want to do that until I'd got settled on Infliximab. I'm seeing him next week so I'm hoping he says that I can drop the dosage again. I've been on this course for a year now and am sick of looking like a fat hideous monster.

Needless to say, I will not be wearing any shorts, skirts or vest tops this summer. I've got the awful stretch marks which are the most awful looking things. People say that stretch marks aren't something to be ashamed of but they are when they're a reminder of how much pain your guts have put you through and how much you hate a drug that was supposed to help make you better but didn't.
 
Zeppy321, my last time on Preds the dosage was 60mg and I was on them for 11 weeks tapering each week, I know where your coming from, the sleep deprivation starts off a whole chain reaction of lousy side effects. As I have had Crohns for 26 years now, you appreciate that I have had of this delightful drug many many times. I am booked in for a right side bowel resection on the 30th of April and although I am feeling nervous about this surgery, I am hoping that I can have some normalcy back in my life, keeping my fingers & toes crossed. keep your chin up it will get better. Theresa.
 
Terry said:
Zeppy321, my last time on Preds the dosage was 60mg and I was on them for 11 weeks tapering each week, I know where your coming from, the sleep deprivation starts off a whole chain reaction of lousy side effects. As I have had Crohns for 26 years now, you appreciate that I have had of this delightful drug many many times. I am booked in for a right side bowel resection on the 30th of April and although I am feeling nervous about this surgery, I am hoping that I can have some normalcy back in my life, keeping my fingers & toes crossed. keep your chin up it will get better. Theresa.
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Thanks again Theresa. I hope your resection goes very well at the end of this month. Please keep me posted on how your doing. :ghug: Cheri aka Zeppy
 
Hi All,
My Humira has started to work, I am on a every other week schedule. No bleeding thank goodness, for the first time since September. I am now off of the Lialda and Prednisone. The Prednisone ironically cause me to be hospitalized because of hallucinations. Had to accelerate the taper schedule. I feeling much better now.
__________________
Diagnosed in 2010. Crohn's/UC
Current Medications Humira,Evista Florastor

Past Rowasa, Canasa, Uceris , Lialda, Prednisone
 
Hi everyone my name's Tracey and I am a newly. I was taking the steroid Prednisolone for 8 months, 4 30mg tablets a day. My doctor forgot I was on them and I was on them for 6 months longer than I should have been. My side effects were and still are anxiety, depression, insomnia and painful muscles in my arms and legs and severe headaches. I think that I should have been told about the side effects before hand or at least when I started taken so that I would know what to expect. I stopped taking them 3 months ago but I still suffer some of the side effects.
 
The anger came later, I first thought I was going mad, I was frightened of everything, I couldn't keep still I was all jittery, I had palpitations, I was really hot and I couldn't sleep amongst other things. The doctor said it was the mini heatwave we had in August, which I accepted because he was my surgeon and he supposedly new what he was doing. I started to look into my medication myself and all the symptoms I was suffering were the side effects of the steroids. I emailed my doctor and he fobbed me of, then 2 days later I had a phone call at home with a plan to reduce the steroids. I started weaning myself of the steroids following the doctors plan and I ended up in hospital for a week because he weaned me off them to quickly. I wanted to tell my story because if it makes one person question there medication and stops them going through what I did, or at least prepares them for what could happen at least some good will have come off it.
 
Zeppy321 said:
I can't take these side effects - headache, mood swings, sleepless nights , rapid heartbeat. I don't know how you guys are doing it. I'm only on 20mg daily - I see some of you are at a much higher dose. I have a doctors appt. on Thursday with my primary care doc not my GI , he never wants to see - only like twice a year. Anyways I have to stop taking this prednisone and will tell my doc on Thursday. Can anyone just not take this drug ? Is there something else I can take instead ?
Click to expand...

Don't stop taking them you have to be weaned of them really slowly. I don't take them anymore, but it probably depends on if you need them to stay healthy. I really struggled, I thought I was going mad, I was so desperate that I decided to go and see a councillor, it helped me a lot, I also taught myself relaxation techniques, I didn't believe in all that stuff but I went into with an open mind. I've put my story on this forum because I know how scary it can be. I didn't think it would ever get better but it has.
 
I'm back on Prednisone (30 mg/ day), and so far the side effects haven't been too awful. Less bleeding and pain, but less sleep and a bit of moon face starting up.

The only thing I've noticed that's different is that I feel a lot more bloated than I did before the Pred. Could be period related (which was a lot lighter this time around?), but I'm not sure. Has anyone experienced an increase in gas/ bloating on Pred? I mentioned it to the GI and he just suggested taking Miralax at night. I've been doing a capful with dinner and I'm reluctant to add more, but it seems to have helped a little. My belly isn't visibly distended, I just get awful gas bubbles on my left side, and the general feeling that my abdomen's very tight.
 
trashoken said:
Don't stop taking them you have to be weaned of them really slowly. I don't take them anymore, but it probably depends on if you need them to stay healthy. I really struggled, I thought I was going mad, I was so desperate that I decided to go and see a councillor, it helped me a lot, I also taught myself relaxation techniques, I didn't believe in all that stuff but I went into with an open mind. I've put my story on this forum because I know how scary it can be. I didn't think it would ever get better but it has.
Click to expand...

I saw my primary care doctor today and he put me on a taper going down 5mg every 4 days and staying on 2.5mgs till I can get in to see my GI on the 28th of this month. Did you get headaches while you were on prednisone ? I have terrible headaches now . I just can't wait to get off this stuff. I'm very happy to hear things have gotten better for you. :hug:
 
Hi Zeppy 321

I had really bad headaches I also had dizziness, my mouth was always dry and for some reason my sinuses all always played me up. I glad there reducing your tablets, if you feel unwell or anxious make sure you go to the doctors. They reduced mine to quickly and I ended up with anxiety and depression so ended up dropping 1mg a week it took longer but i felt better. Good luck keep in touch let me know how your doing

TRACEY
 
Hi, I have been up since 3am with extreme joint pain in my knees, hips and ankles!!

Anyone got any advice or tips on how to help it:/?
I need to sleep:( x thanks x
 
Hi Natasha,

I'm sorry your suffering, I also find it hard to sleep, I was only sleeping for a couple of hours a night because I was in so much pain, and lack of sleep was making me anxious and tense, which then made the pain worse. I don't know if this will help you but I go out for a long walk of an evening, which makes me quite tired and I take 2 paracetamol and a hot water bottle. If my muscles are really painful I take 2 codeine phosphate in the morning and 2 of an evening before I go to bed. I hope that is of some help,
 
Hi trashoken, thanks for the reply:)

I shall give the paracetamol and hot water bottles a go tonight. I have done quite a lot of walking today so hopefully that will help but will try having a long walk tomorrow evening and see if it makes a difference:)
Thanks x
 
Let me know how you get on, I will be thinking of you when I'm trying to get some sleep tonight. Good luck.
 
Hi trashoken,
Another bad night unfortunately!
Was up at 4 in pain and then just had a restless night after that! Took pain relief but hasn't seemed to have done anything.
Ended up not going to uni as couldn't walk this morning. Luckily I have stuff that I can get on with at home!

The pain is starting to ease off a little bit now so hopefully it will go soon! Xx
 
Have been on prednisone, pred forte and durazol for the last three months. Headaches are frequent and at times unbearable. Unfortunately pain relief is limited to Butalbital which doesn't completely take the pain away. Can't take Imitrex due to having Raynaud's (in addition to Crohn's Colitis, Lupus, Uveitis, etc.).

Does anyone have any suggestions for other pain relievers? Perhaps something natural? Thanks.
 
NatashaChampion said:
Hi trashoken,
Another bad night unfortunately!
Was up at 4 in pain and then just had a restless night after that! Took pain relief but hasn't seemed to have done anything.
Ended up not going to uni as couldn't walk this morning. Luckily I have stuff that I can get on with at home!

The pain is starting to ease off a little bit now so hopefully it will go soon! Xx
Click to expand...

Hi Natasha,

Sorry to hear that you had another painful and sleepless night. Over the last 4 weeks I have had blood test after blood test trying to find out why my muscles in my arms and legs and feet are hurting. Today I had a phone call from my doctor telling me that I have anaemia and that I need to take iron tablets immediately and also I needed to up my magnesium and I need B12 injections every other day for 2 weeks. Have you had any blood tests to see if you are dehydrated or have any other problems.

My feet hurt me all the time, especially in the morning, what I do before I go to bed is soak them in a spa bath. Then when I go to bed I rub in Voltorol, if I get really anxious because I have not had any sleep for a long time I take Lustral that is herbal sleeping tablet that you can buy over the counter at the chemist.

Also I don't know if you are the same as me but I can get some sleep in the daytime so if it is possible try to get some sleep then.

When I was in hospital they gave me sleeping tablets to help me sleep called Zopliclone but you need to go to the doctor for them and they are addictive, so I only took them a couple of times a week when I was desperate.

My feet hurt every morning I have to go for a walk to get them going and make them loosen up, have you tried to do that.

Let me know how you get on, I really do now how your feeling and if you need to ask me anything please don't hesitate.

Tracey xxx
 
Hi Tracy,

I was told i was anaemic back in December and have been taking iron supplement since then, but I havent had any blood tests since to look for anything else, i suspect i am probably deficient in something so im going to ask my consultant to do a blood test when I see him next!

I will have to have a look in to the things you do, i will try anything at the moment!

I tend to have sleep during the day most days as by 2 in the afternoon i can barely keep my eyes open!

Normally i have to get going as well and the pain tends to were off, although today its just been a constant dull ache unfortunately:/

Going to take some pain killers and try and sleep now! Wish me luck haha! Hope things go okay for you too:) xxx
 
I got some Tramadol when I was struggling with the Pred. By far the best painkiller I have ever had on Crohn's, not only that it makes your body release endorphins so mentally you feel awesome! Just don't take it too often or you can get a bit of a sad comedown
 
Hi Plissken I was taking Tramadol in hospital, where I agree it is a good painkiller, but after taking the predisinole for 10 months, 8 months longer than I should have been I suffered bad anxiety and panic attacks and also depression, and taking the Tramadol made me even more depressed. But I do agree Tramadol is definitely a good painkiller, but very addictive but then aren't they all.
 
So I forgot to take my pred this morning. I normally take it once a day as soon I wake up. I'm tapering on 30mg a day down from 35mg which I took for a month. At around 7.30 PM I started feeling nauseous and then severe fatigue and dizziness. I took my pred as soon as I could. Still a bit tired but a little better. Given it was 36 hours since my previous dose I'm guessing this was withdrawal symptoms starting?
 
Yes Paxxy, similar thing happened to me. I always took it in the morning.

One day I forgot and went to work, by 3pm I had headaches and dizzyness. Finally got to take it about 6pm. After that I didn't forget again!
 
Last edited:
I stopped taking predisinole 3 months ago, and I'm still feeling the effects of it, dizziness, nausea, fatigue, headaches, hair loss, muscle pain and anxiety, its getting easier and I'm slowly feeling better. I only wished that the doctors would have explained that these side effects could or would happen. Its a big shock when your told you have Crohns and Colitis, and you have to deal with colostomy bags, eating problems and diarrhea, but I never expected all the problems I've suffered with the medication.
 
So given I didn't take it until 8.30 PM should I now go back to normal and take a morning dose again? Or will that put too much pred in my system at once and I'd be better off taking a day or 2 to bring the dose back to the morning? Say 4PM today, Midday tomorrow and back to morning day after?

I could use a few quick replies it's almost my normal dose time.
 
I Always find that if I had a muck up with the timing of taking my preds like you did, I would only take half the dose in the morning, and start back on the full dose the next day. At least you have some in your system. Good luck . Theresa.
 
tlc7376 said:
So I have been on the prednisone for about 3 weeks now, and sometimes the side effects are horrible, especially the sweating, and sometimes they are pretty bareable.......is this normal?
Click to expand...

When I took the prednisone I used to sweat quite a lot and a I also got painful headaches, I took paracetamols 2 x 4 a day and sat in front of a portable fan as much as possible especially when it was time to go to bed.
 

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