The Miserable Prednisonites Club

Crohn's Disease Forum

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duh panda said:
Been holding 10 mg (almost comfortably) for going on 2 weeks now. Slowest taper/ attempting to taper of my life. going on.. 8 months? Maybe 9? I can't even remember when we initially started trying to get me off of it while playing with/ testing maintenance meds. over the last 2 years. 3rd time on remicade, fingers crossed it'll be 3rd time to successfully come completely off of pred.

Probably won't be tapering any further until after my 3rd remicade loading dose, but it's interesting to see the chipmunk cheeks going away.

I didn't realize just how much pred. gives me an energy boost. Even just a 5 mg. difference wrecks my days with a good 2 week adjustment period. The exhaustion is kicking my butt - if I dont lie down for a nap I find myself nodding off wherever I am and whatever I'm doing. And my naps often become more like full on sleeps unless I set multiple alarms to pull me back out of it.

Oddly enough, it's only since the lower dose that I've been managing to put ON weight, which has been much needed, and am seeing some muscle mass returning. Never thought prednisone could be the issue for why I was struggling so much to gain or hold weight and specifically muscle mass. But apparently it can deplete protein sources on top of everything else it does, wasting away muscle, which of course further compromises bones/ joints. etc. Prednisone - she's one mean bitch.

Getting super excited to be recognizing myself in the mirror again - not just a pair of twiggy legs and arms on a body with a soft, rounded belly yet jutting hip bones and an even softer rounded face with the tip of a nose and little eye peeking back at me.

I did go ahead and say screw it and buy clothes that fit regardless of knowing I'm likely to gain at least another 10 lbs if things keep improving which certainly has helped with getting back stronger positive body-image. I figure of all the things we worry about how our clothes feel/ fit should be the least of it. I was so sick of feeling sick because none of my clothes fit and were elastic waisted, safety pinned, or held up with belts. If I get that 10 lbs I'll go buy some more things that fit and store this latest round of clothes for when they're needed again.
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I keep two sets of clothes ones for when I am normal and ones for when I have to go on prednisone. My mom made me start it when I was very little because I have had Crohn's since I was 7 and it got so expensive buying me clothes everytime I lost weight. Hope this helps someone a little bit.
 
So, for my recent birthday my parents gave me a spa day! for $60.00 i got a full body professional massage and what i swore i would do after receiving it was run right to this blog. Guys, when your coming off Pred you have that water weight trying to leave your body, it hurts, it makes your skin sore, stretch marks, ect. all i can say is that massage was amazing!! They moved the water for my and brought great relief to my stretched places. go get it done, 1hour, full body, trust me your wont regret it
 
SunshineSam said:
So, for my recent birthday my parents gave me a spa day! for $60.00 i got a full body professional massage and what i swore i would do after receiving it was run right to this blog. Guys, when your coming off Pred you have that water weight trying to leave your body, it hurts, it makes your skin sore, stretch marks, ect. all i can say is that massage was amazing!! They moved the water for my and brought great relief to my stretched places. go get it done, 1hour, full body, trust me your wont regret it
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I have always wanted to try a spa/ professional massage but am nervous about others touch me and apply pressure when already sore for such a high price, maybe it's time to just go for it. Glad to hear it helped!
 
Massages are wonderful! Do it, you'll be glad you did.

Is it worse to be on the dread Pred or coming off it? beats me. I have been having a bunch of symptoms and talked to my s-i-l, who's had a ton of experience and she said - Prednisone withdrawal. So I looked it up and there they were. Of course, my GI never told me about them. Why do we have to look up so much on-line? Why can't our doctors tell us these things?

Anything I've really learned about this disease, I've had to do myself.

End of rant.
 
Oh both are not so fun at all! I get a lot of back and join pain and low energy when I start to wean off pred. Sadly it's one of the only meds that actually work for me but I usually wait till it's bad to take them because both on and getting off the medication is an adventure in itself!
 
Marlena it was worse coming off it for me, the worst pain ive ever felt was the drop from 10mg to 5mg that kidney pain...get with a neurologist stat! and try replacing your Cortorsol on your own with foods like grapefruit and lotsssss of water. good luck
 
Thanks, sunshine - I'll look up what else I can use, as I can't eat grapefruit, although once in a very great while, we share one.
 
Hi all,

I am on a very short course of pred 5mg (so pretty low) suppositories. I am on day 3 of 5. I was wondering if anybody had any light on something I am experiencing. It happened within the first day. I am too scared to pass wind because I will just release 'oily' water when I want to go to the loo. It is yellow. Surely this indicates malabsorption? I am at a loss... It happens quite a few times during the day, and will also occur during the night when I get up to go to the loo. :( It's that or just lots of orange mucus. Plus the pain I get in my stomach... It's making me unhappy! Anybody else experienced this? I am currently undiagnosed.

EDIT: currently feeling stupid - no wonder i'm passing wind with something stuck up my backside and ofc.. it's oily! Either way, it still makes me damn miserable (and feeling stupid), so hopefully I still belong in this group for the time being!
 
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How much? In higher doses you can experience a whole raft of symptoms - look them up and be prepared. I think the most common are sleeplessness combined with being the energizer bunny, weight gain and chipmunk cheeks. But it works. Also, you may experience impatience and anger. Good luck!
 
Marlena said:
How much? In higher doses you can experience a whole raft of symptoms - look them up and be prepared. I think the most common are sleeplessness combined with being the energizer bunny, weight gain and chipmunk cheeks. But it works. Also, you may experience impatience and anger. Good luck!
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Hi I have been put on 40mg reducing slowly to 5mg to none... I hope the irritability and anger isn't bad as I suffer from that as it is... :/
 
kellehbeans said:
Hi all,

I am on a very short course of pred 5mg (so pretty low) suppositories. I am on day 3 of 5. I was wondering if anybody had any light on something I am experiencing. It happened within the first day. I am too scared to pass wind because I will just release 'oily' water when I want to go to the loo. It is yellow. Surely this indicates malabsorption? I am at a loss... It happens quite a few times during the day, and will also occur during the night when I get up to go to the loo. :( It's that or just lots of orange mucus. Plus the pain I get in my stomach... It's making me unhappy! Anybody else experienced this? I am currently undiagnosed.

EDIT: currently feeling stupid - no wonder i'm passing wind with something stuck up my backside and ofc.. it's oily! Either way, it still makes me damn miserable (and feeling stupid), so hopefully I still belong in this group for the time being!
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Are you on any mesalamines? They can cause some interesting colors...I was on colazal and i got orange mucus too. Then when i had a migraine I was puking up fluorescent orange bile. Ugh!
 
1sickpuppy said:
Are you on any mesalamines? They can cause some interesting colors...I was on colazal and i got orange mucus too. Then when i had a migraine I was puking up fluorescent orange bile. Ugh!
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Nope, won't put me on that until I'm fully diagnosed I don't think! Being told to have all my bloods redone as 5mg Pred basically did not a lot.. They want to see my inflammation counters again. I've only just stopped taking the pred, but oh my god, it made my bum so spotty, and like, painful spot! How do you people deal with being on it for a long time? :(
 
Kimbo, I also got heavy legs and arms. I'd heard of this and wondered what it meant, then I experienced it. I could barely get to the top of the stairs, my legs felt as if they weighed two tons each. And washing my hair became exhausting because of my arms feeling the same.
It all passes off though, I'm now down to 15mg from 40mg and have really noticed the difference this week. Prednisolone is nasty stuff but it does the job 😉
Bunty x
 
Kelle, you just have to live through it because it really does work. And you know all the side effects just vanish once you've finished your eight or nine weeks on it, in fact the twice I've been on it for that length of time I've found the last two or three weeks you almost feel back to normal.
And really there's little alternative to it, to get a flare sorted 😕
Bunty x
 
Bunty said:
Kelle, you just have to live through it because it really does work. And you know all the side effects just vanish once you've finished your eight or nine weeks on it, in fact the twice I've been on it for that length of time I've found the last two or three weeks you almost feel back to normal.
And really there's little alternative to it, to get a flare sorted ��
Bunty x
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There may be a chance they put me back on it. I have to admit though, I had no real BM on it, except watery, which was simply just weird for me. I have just been taken off of it in preparation for some blood tests just to see inflammation (if any). Doctor is confused as to why I didn't really respond to the Pred. I think there is a good chance at the moment I possibly have proctitis and I could have done with a higher dose of it to help.
 
KimboHiggs said:
Hi I have been put on 40mg reducing slowly to 5mg to none... I hope the irritability and anger isn't bad as I suffer from that as it is... :/
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I seem to be more irritable now I am off of it!

Also, see you are from Bedford! I am nearly always up there as my boyfriend lives there.
 
Hopefully! It just made me spotty and that was only over 5 days haha!

Oh god, Kempston kebabs will be the death of me. They were SO good. My boyfriend is currently in Putnoe but comes from one of the surrounding villages [emoji4]
 
kellehbeans said:
Hopefully! It just made me spotty and that was only over 5 days haha!

Oh god, Kempston kebabs will be the death of me. They were SO good. My boyfriend is currently in Putnoe but comes from one of the surrounding villages [emoji4]
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Oh god! Better go top up my make up bag :')
Haha kempston kebabs are good!!!
I don't have any friends around here since my episodes of constantly in and put of hospital I lost all my friends (sound like a right loser haha)
Yea I know putnoe quite well x
 
KimboHiggs said:
Oh god! Better go top up my make up bag :')
Haha kempston kebabs are good!!!
I don't have any friends around here since my episodes of constantly in and put of hospital I lost all my friends (sound like a right loser haha)
Yea I know putnoe quite well x
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Luckily, it wasn't on my face - just uncomfortable really! I think they're starting to go down, and that's only after 2 days off. Maybe it was just a coincidence, but either way, I was grumpy! :D

It's OK, I have no real friends down here in Reading, most of mine are now up in Bedford! I haven't been hospitalised or anything of the likes though, I'm just a loser in general. :p That, or all my friends moved to different countries..

We bought the kebab sharer for 4 from there, and it could feed 6. Was SO surprised. My boyfriend has UC and what with my current circumstances, it wasn't a pleasant afternoon when we got back home! Totally worth it. Andreas however.... no. :D
 
Oh I always get random spots on my arse so won't be no change there hahaha :')
I don't know anyone with Crohns or UC so made things difficult and people moved on I was always too unwell so I'm just a loser now haha I have to deal with the lads (my boyfriends friends) which gets draining to say the least so I got a cat :') lonerville in K-town lol
Oh god Andreas should be illegal I can't understand how it's still open hahaha oh dear!!!
 
KimboHiggs said:
Oh I always get random spots on my arse so won't be no change there hahaha :')
I don't know anyone with Crohns or UC so made things difficult and people moved on I was always too unwell so I'm just a loser now haha I have to deal with the lads (my boyfriends friends) which gets draining to say the least so I got a cat :') lonerville in K-town lol
Oh god Andreas should be illegal I can't understand how it's still open hahaha oh dear!!!
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If I do, I don't notice, but these actually quite hurt! :( I didn't really know about UC/CD until the beginning of this year, and then all of a sudden, downward spiral I go. Still awaiting my GI appointment, and my GP decided to take me off of the Pred rather than trying to up the dose or continue with my own dose and allow the GI to decide. No doubt I'll be back on it.

Cats are awesome, so I wouldn't worry! I know a lot of people in Kempston, I'm sure you can find some others! Haha!
I heard they do something called chocolate toothpaste there. Apparently that is a Bedfordshire special, but I have yet to try it. :( My boyfriend ordered from Andreas while he was drunk at 1:00am after returning from a charity day in Cotton End... Bad times.
 
I didn't really know about it until I was diagnosed last year and it's gone downhill since then :(
I wouldn't know where to start I can't work currently as I'm under investigation with bad active flares atm so finding friends is a struggle lol how do you find new friends at 23 and you can't work?!
I will offer some advice on the chocolate toothpaste thing the best one you will ever ever ever taste comes from the cottage bakery there's one in kempston and one on London road they are the best ones I've ever tried because there the only fresh daily made ones I've found yum yum might have to go get one now Lool xx
 
KimboHiggs said:
I didn't really know about it until I was diagnosed last year and it's gone downhill since then :(
I wouldn't know where to start I can't work currently as I'm under investigation with bad active flares atm so finding friends is a struggle lol how do you find new friends at 23 and you can't work?!
I will offer some advice on the chocolate toothpaste thing the best one you will ever ever ever taste comes from the cottage bakery there's one in kempston and one on London road they are the best ones I've ever tried because there the only fresh daily made ones I've found yum yum might have to go get one now Lool xx
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Exact know that feeling. I'm 23 in September, and a lot of my friends went to university and my best ones seemed to move countries... and I went into an apprenticeship. OK, I've made friends, but they're all a lot older than I, have families and have other lives to lead. So I'm kind of stuck on my own here. I've tried other things too, I do volunteering etc. but I just can't do it any more because I'm in pain (and I deal with kids 16 miles away from home straight after work! - not ideal!) and it's just become too tasking. I always end up making friends with people a lot older than I. :( Story of my life!

Cottage bakery?! On it, like a car bonnet. I will find it and I will taste it!! :p
 
I know the feeling :/ crohns is poo (pun intended) yea I did just don't have anywhere to go to meet people... Ah well I will survive as they say
Haha good I promise you, you will love the cottage bakery chocolate toothpaste haha x
 
Haha, poo puns - love it! :D Maybe you need to sing the 'I will survive' in your head. :D
I will definitely give it a go. I'm not up until the bank holiday weekend, but my boyfriend is ringing me tonight, so I'll make sure I mention it to him. Also may mention he made it himself and said it was good and said he was going to make it for me..... he never did.
 
Haha oh dear! You can't go back on your word to a female if it includes chocolate or cake or any form of pudding really!! Lol
Well enjoy missy! :) x
 
KimboHiggs said:
Haha oh dear! You can't go back on your word to a female if it includes chocolate or cake or any form of pudding really!! Lol
Well enjoy missy! :) x
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EXACTLY!!! He did make me a wonderful cake once before and took in to account I had to go dairy/gluten and whatever else free, which was lovely - as it was his first time baking - and he's 30.. haha!! Bless him. His friends tell me he intends on keeping me by doing this. :rof:

I will have to let you know what I think! :D

@Charlotte - Pred does this?! Gosh, I'm glad I didn't stay on it longer then, I'm hyperactive as it is! :redface:
 
@Kellehbeans: Yes, it does for me, probably not for everyone. But I was given a huge dose intravenous yesterday, so the side effects kick in pretty hardly...
 
kellehbeans said:
EXACTLY!!! He did make me a wonderful cake once before and took in to account I had to go dairy/gluten and whatever else free, which was lovely - as it was his first time baking - and he's 30.. haha!! Bless him. His friends tell me he intends on keeping me by doing this. :rof:

I will have to let you know what I think! :D

@Charlotte - Pred does this?! Gosh, I'm glad I didn't stay on it longer then, I'm hyperactive as it is! :redface:
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Haha bless him! I've been with my mister nearly 7 years and he has never baked for me but he does cook for me regularly (nothing extravagant) but he cooks nonetheless and I haven't run my own bath in YEARS!!! I think I've forgotten how haha he is currently re dying my hair as we speak so he is brilliant
I guess I have some support... I don't talk to my family so with no friends he literally is my only support
Hope I get hyperactive instead of angry :') it'll be more enjoyable lol x
 
Charlotte. said:
@Kellehbeans: Yes, it does for me, probably not for everyone. But I was given a huge dose intravenous yesterday, so the side effects kick in pretty hardly...
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Ouch, and extremely quickly too. How else are you feeling apart from that?

@Kimbo - Ah, we've only been together 7 months almost. Not long, but for long distance, I guess it is! :dusty: He's just told me he has band practice and forgot about it, so now can't call me. :frown: Put a bit of a downer on my day in all honesty. He said he could call me tomorrow night, but I'm out. I don't like the stretches of when we don't see each other.

Your guy sounds pretty awesome to run you baths! I had that once, but I'm not around often enough! I'm totally jealous on that half! I have some kind of support from my parents, but they don't understand, and my OH is OK at support but I try and hide if I'm in pain from him a lot, because I'm undiagnosed and I feel I'm probably not in as much pain as he is with UC if I have nothing wrong; you know what I mean? x
 
kellehbeans said:
Ouch, and extremely quickly too. How else are you feeling apart from that?

@Kimbo - Ah, we've only been together 7 months almost. Not long, but for long distance, I guess it is! :dusty: He's just told me he has band practice and forgot about it, so now can't call me. :frown: Put a bit of a downer on my day in all honesty. He said he could call me tomorrow night, but I'm out. I don't like the stretches of when we don't see each other.

Your guy sounds pretty awesome to run you baths! I had that once, but I'm not around often enough! I'm totally jealous on that half! I have some kind of support from my parents, but they don't understand, and my OH is OK at support but I try and hide if I'm in pain from him a lot, because I'm undiagnosed and I feel I'm probably not in as much pain as he is with UC if I have nothing wrong; you know what I mean? x
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Aww bless your heart I'm lucky I have my mister around all the time but when he goes out it really sinks in how lonely I am it's so hard...
I'm sure you're mister would be 100% supportive whether you have IBD or not as he has felt the pain himself so know how uncomfortable abdo pain can be!
X
 
KimboHiggs said:
Aww bless your heart I'm lucky I have my mister around all the time but when he goes out it really sinks in how lonely I am it's so hard...
I'm sure you're mister would be 100% supportive whether you have IBD or not as he has felt the pain himself so know how uncomfortable abdo pain can be!
X
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Strange how suddenly you can become miserable isn't it? I'm going to go play Badminton after work with a friend, so maybe that'll cheer me up. Certainly don't feel like I will be at this precise moment in time though. Then, I have all these stupid blood tests tomorrow so who knows what it's going to show and am I going to get any further? *sigh* Too much going on. Could have done talking to him, even if it was about rubbish. Sure, we text every day, but it's just not the same.

He is definitely supportive now, but that's not the point, I just don't like complaining because I'm scared the doctors are going to tell me that nothing is wrong!
 
New to the forum.. Day 8 of 50mg pred and I feel like I am made of cement and got hit by a bus, and that's not including the mood swings! Feeling like the most miserable prednisonite today.
Plus side is I'm healing, no more blood and the mouth sores are going away, my silver lining!
 
The first time I was put on Prednisone I thought it was a miracle! I felt normal for the first time in years (it took a long time to be diagnosed with Crohn's).

This time it doesn't seem to be working as my Crohn's symptoms are kicking my arse hard. I feel like there should be a ceremony in my kitchen, giving me a medal every morning I'm tough enough to actually get out of bed.
 
AusCrohny said:
The first time I was put on Prednisone I thought it was a miracle! I felt normal for the first time in years (it took a long time to be diagnosed with Crohn's).

This time it doesn't seem to be working as my Crohn's symptoms are kicking my arse hard. I feel like there should be a ceremony in my kitchen, giving me a medal every morning I'm tough enough to actually get out of bed.
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This is exactly my experience right now! First time on pred I felt like I could move mountains, this time I feel caught under a freight train! I hope you are able to keep toughing it out, and your body starts to heal.. You're not alone in your misery or your brave face!
 
Starting another short cycle tomorrow, only 2 months I hope, 50mg then taper, and know I'll become ornery and get acne as this is what has happened the last few times. Anyone have any acne preventative measures as I hate feeling insecure about acne along with everything else. Prednisone sucks, I'll take the weight and irritability as I'm thin and am a dick anyways but the acne sucks. Hoping the cycle works and any feedback would be great.
 
DarrinA said:
Starting another short cycle tomorrow, only 2 months I hope, 50mg then taper, and know I'll become ornery and get acne as this is what has happened the last few times. Anyone have any acne preventative measures as I hate feeling insecure about acne along with everything else. Prednisone sucks, I'll take the weight and irritability as I'm thin and am a dick anyways but the acne sucks. Hoping the cycle works and any feedback would be great.
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Haha I have to say your comment about being thin and a dick anyway made me laugh haha I am very much the same lol!!
 
Help!!!! I've been on the devil drug, aka prednisone, lol. But seriously I've been on it for 6 months close to 7 months now. And I am on it until my new drug (entyvio) comes through. And I just found out that I will be on it until my second infusion, which will be around the holidays. I normally have anxiety but the steroids are making it WAY worse. I have been having a panic/anxiety attack for almost 6 days now. Having chest pain, shoulder pain, almost like a heart attack. I know it's not a heart attack but it sure feels like one. I can't sleep, I am getting only 3 maybe 4 hours a night. I don't know how to help with the anxiety. I'm already on 5mg of valium a day, and celexa at night. I already called my doctor and they said to increase my valium, I did. So far nothing. I know if I go to the ER that they'll treat me like I'm crazy, only draw blood and maybe if they're wanting to help give me some other benzo, like Ativan or Xanax. It's not that I'm strictly after benzos but I just want relief from this anxiety from the steroids. My question to everyone who has been through or even going through the same thing, have any advice for me. Other than the typical anxiety tricks, like calm down, focus on something else, etc. I just need help, I can't deal with this anymore!!!
 
Good morning to all. I have been on steroids since 2006. I have been on doses as high as 80mg to a present dosage of 10mg. I have come to the end of the line in terms of drugs out there to help my Crohn's. My autoimmune system has stayed in overdrive rejecting so many drugs with anaphylaxsis, hives and any other rejection symptoms you can think of. I also have anaphylaxsis to latex. I guess what I am saying here is that I probably will never get off the steroids since that is the only medication I can take to get some kind of control for my Crohn's. I also have Crohn's arthritis, fibromyalgia, PSC (diagnosed with liver biopsy), depression, steroid induced Addison's, and the laundry list goes on. I have chronic diarrhea and wear diapers when I go out. Over time I have just resolved that this is just a disease I have to take one day at a time. I was in the hospital 17 times in one year trying to get my situation under control. Don't get me wrong, I am not depressed over it. I have a tremendous support system and that helps in big ways. One thing that is weird and no one can understand is my lack of appetite with the higher the steroids and weight loss. They feel it is part of my overactive autoimmune system. I am getting ready to have cervical spine surgery to remove two bad disks, bone spurs, and calcification. They are certain it is because I have been on steroid for so long I am seeing the negative side. I am on megadoses of Calcium, vitamin d and B12. I am disabled (permanent) since 2006. So, I pray for all who has to fight this disease and say....hang in there. I hope this note helps those out there who are struggling. Thank you for reading my post.
 
Pred. Has been my primary means of getting things under control and I'm also sitting at 10mg currently while have been as high as 80 in the past since 2006 have enjoyed a couple months up to one glorious year off of it before taking another nosedive.

Was thinking it'd boost my weight/ wellbeing this time like it has without fail in the past but even at 50mg didn't see weight gain and it hasn't boosted me health wise like previously... just holding things as I've worked my way through last ditch efforts.

One of the interesting things about long term pred. use that I'd never considered was how it can leech from muscle groups not just bones and can increase muscle atrophy causing the weakness that I think is so well known. Less muscle, less weight and harder to gain/ maintain with such strong demands being made on the body I've seen high injuries this time around that are refusing to fully heal.

Since getting to a lower dose there's finally been some gains and muscle return and inch out of the danger zone, but I kept increasing diet and now eat around 4000 cal/ day with about half liquid/ half solid with a high protein focus and included some strength training starting with basic body weight therapies to get some muscular support back before pushing it with weights/ light cardio etc. Family thinks I've just held onto the athlete mentality 're: training... which might be true but now I train for that next crash so there's as much to work with as possible since pred. doesn't seem to be doing much but tapering below 10 results in bloody stools no matter how slow or gradual I try to take it!
 
Thanks for the reply to my post. I will take the information to heart. You are right about the fatigue and muscle weakness. I am drinking extra protein and walking was a great exercise until my cervical problems started. At first I figured it was just an aging problem according to just a standard xray. So I went to PT and they did traction, hot/cold, exercises but getting worse so an MRI was done to see the real problems. I can't wait to get back to walking. I can feel such a difference. I also eat some liquid foods and whole foods. Again thank you.
 
Goofyrn2 I feel for you and haven't had much success on anything but Prednisone either. I am waiting fir a new drug Entyvio which I hope to start in a couple weeks. Check it out, never know as it also seems to be my last resort and reading up on it sounds positive, similar to Remicade but better results. Good luck and all the best.
 
DarrinA said:
Goofyrn2 I feel for you and haven't had much success on anything but Prednisone either. I am waiting fir a new drug Entyvio which I hope to start in a couple weeks. Check it out, never know as it also seems to be my last resort and reading up on it sounds positive, similar to Remicade but better results. Good luck and all the best.
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I went into liver failure on Remicade but I did give Entyvio a try but had an anaphyaxsis response to it. But I do hope it works out great for you. Yes it does sound positive for so many.
 
Hi guys, so im a week into my 8 week course on 40mg of pred I havent taken todays dose yet which will be my first drop down to 35mg for a week and drop by 5mg oer week there after... last night i was in agony! My neck my shoulders my back arms and sides but my legs were ok and its the same this morning im in agony it hurts to brush slightly as well as very very tender... is this normal?!?! It hurts so much :'( :-( :'( hate feeling like this x
 
Hey Kimbo. Different folks respond to prednisone in such a wide range it is hard to say that is causing it or not but it certainly is suspicious. I know when I came down from my high level prednisone (120 mg), I had to come down 1 mg a week and alternating with 0.5 mg the next week and then back to 1 mg. It can be a tough road and you should call you doc and see what they wants you to do. Coming off the drug is hard but with patience it can be done esp. if they dose you properly. Please keep us posted and don't forget to vent here. That helps too.
 
Down to 30 mg today, had Mri done ugh that was bad drinking two and a half bottles of barium. Tech said they got good pics buts I came home threw up everything and now I'm just waiting for results to see how bad this flare is going to be. So nauseous and hungry at the same time my body can't decide. I'm so tired and with my kids school, birthday parties and the crazyness of fall I'm so worried I need to be better like yesterday
 
New to this thread.
Worst flair up ever, and now I'm 3weeks on 40mgs of Predisone a day and haven't started a tapper.... I'm waiting for Remicade infusion with low dose Imuron a month from now.
So I get to dance with the devil with prednisone.
The EIM's and flair up in the guts are better, I can walk, my uveitis is better... I can eat now, so for that I'm thankful... I even like the manic phase...
But every other day after the manic phase.... I'm moody, tired, and lack any will power.
I wish I could sleep. Hate the night sweats.... So far I have avoided anxiety, and unwanted fat gains....
But given the choice.... I rather take prednisone than suffer like I just did.
 
Diselfitter,
Hang in there. Yes steroids are the pits but at least it helps the Crohn's symptoms and yes at a price. Hopefully when you get treatment next month they can get you off of those fairly quickly. Depending on the person depends on how quickly you can taper. As for gaining weight, I found this weight came off easier than typical weight. Remicadee is a good drug and with Imuran you should have a winning hand. Keep us posted. This is a great site to update yourself and vent.
 
Just got back from the doctors hes put me back up to 40mg for another week at least before tapering by 5mg a week until 0...
Feeling horrible today every muscle hurts im tired and really low been crying for 2 days :/ seeing a new GI next week too hope everyone is ok x
 
Hi KimboHiggs
I suspected that you were just going down too quickly for your own system. Hang in there. You will feel better soon.
When I couldn't taper on the steroids I actually went to an endocrinologist to taper me very slowly since 5 mg no matter what was just too fast. Took a long time to get off of them but it worked.
Good luck with the new GI. Hopefully he will have the answer for you.
 
goofyrn2 said:
Hi KimboHiggs
I suspected that you were just going down too quickly for your own system. Hang in there. You will feel better soon.
When I couldn't taper on the steroids I actually went to an endocrinologist to taper me very slowly since 5 mg no matter what was just too fast. Took a long time to get off of them but it worked.
Good luck with the new GI. Hopefully he will have the answer for you.
Click to expand...

Hi yea they have also put me on prednisolone enemas twice a day too :/ any advice on them anyone?!?!
 
KimboHiggs said:
Hi yea they have also put me on prednisolone enemas twice a day too :/ any advice on them anyone?!?!
Click to expand...


I personally chose not to do the enema's and do the Entocort which is used in Crohn's. I did two of the enema's but just had increased symptoms. You may want to run this drug by your new GI guy and see what he says.
 
goofyrn2 said:
I personally chose not to do the enema's and do the Entocort which is used in Crohn's. I did two of the enema's but just had increased symptoms. You may want to run this drug by your new GI guy and see what he says.
Click to expand...

I've never heard of entocort before they have put me on pred tablets and pred enemas should I use them until my GI next week do you reckon?!
 
KimboHiggs said:
I've never heard of entocort before they have put me on pred tablets and pred enemas should I use them until my GI next week do you reckon?!
Click to expand...

It just depends if the enema's are helping you, doing nothing more, or you just can't tolerate them. Its kinda a decision you have to make. I have accidents with my Crohn's diarrhea and to add an enema was a nightmare. Does this help? Above are the same questions the doc will ask you but I wouldn't think he would be opposed to trying the entocort. I happen to use tincture of opium as well for the diarrhea. Now, this is gut specific and does not make you high or dependent on it so don't freak out. I have been on it twice now with great results. If you do not have insurance it is very pricey since it is dispensed in ggts and typically they give you a bottle that they can just give you to last about 6 months. It has to be ordered and some pharmacies are not able to even dispense it. I got it at Walgreen's. I hope all this information helps you.
 
I would recommend trying Entocort, as well. In a flare-up it did help me quite well without all the side effects of prednisolone. But, unfortunately, it does not help any more even though my terminal ileum is inflamed but either that's not the only region (what my GI suspects) or it is not strong enough. But it's worth a try, to my mind. It it works, it works quite fast, so one can step up to prednisolone if it does not work within 3-5 days, that's what I was told back then.
Best wishes, Kimbo!
 
I am down to 5 mg for the first time since starting the dread Pred. Hooray. Hopefully, in another month or so I may be off this junk. Bruising less and sleeping a bit better, and even the headaches have gone. Oh to be halfway normal again!
 
I too have found that a very slow taper works. For me it's been 2.5 drop for 2 weeks and then another 2.5 drop. 5 mg drops are too much for me. It also helps to drink coffee, eat dark chocolate and drink citrus juices to boost adrenal functioning while you drop. At least, for me, this seems to have helped. My doctor wanted to hurry things along, but ti just doesn't work for me.
 
Really? You can drink coffee, eat dark chocolate and drink citrus juices? Sounds like food/drink heaven! I can't have any of these, unfortunately...
 
Yeah, in moderate amounts. But I am on the low residue diet. Overcooked veggies and almost no fresh fruit is the pits. I am allergic to wheat and probably gluten and most GF stuff isn't that good, but I have found some bread and pasta that's sort of ok. But gone are the days of most Mexican or Indian foods, naturally, some of my faves.
 
Oh nice, hopefully I get to that point one day as well. Overcooked veggies is my day to day basis as well and I can't tolerate any fruits. I'm not allergic to grains but I do better eating less to no grains and if yes, then gluten free. I also cut out sugar, which as a good decision. It's so frustrating reading some people with Crohn's can tolerate nearly EVERYTHING! But at least I can have pumpkin, I really love pumpkin ;-)
 
Bad days

I have been on varying doses of prednisone for 22 years with the exception of one 6 month break about 5 years ago. I have had cushings sx frequently and on higher doses a moon face. I try to always be positive but sometimes I just get angry at the disease and the prednisone side effects. I find the older I get it becomes more difficult to just push through everything and then I get a little down. I hate feeling bad for myself but I admit sometimes I just have a bad day and do.
 
JOconnor, what has your medication been like then that you needed pred for 22 years? I thought it's a short term remedy but should not be administered long term. Did you try immune suppressants as well, without success?
 
It is only short term usually. I have been on almost every medication out there. When they taper me down on the prednisone I have severe inflammation and become very sick very quickly, I have severe pain, 20-30 loose stools a day, nausea and fevers and they have no choice but to leave me on it and usually up the dose short term. We have tried resections but my sx return with in several weeks. It isnt a great option but as my doc says it keeps me alive. I am on Entyvio now and am down to 5mg daily which is great because the last 2 years I have been on 10-30mg.
 
Oh, I see. So that's great success being on such a low dose of pred. Congrats! Seems as if Entyvio works really well for you. Hope you can taper even more down in the future. :)
 
Good suggestion goofy. Over the years I've discovered my need to taper by 5 mg until hitting 20 and then needing to slow it down and drop by 2.5 at a time - Dr. basically gave me freedom to take steps to taper as I feel able. Its been a long journey of working to taper, hitting a point where symptoms return, and just finding the lower maintenance dose till being able to work completely off of it.

At 10mg this time around doc suggested alternating 10mg with 5mg (two weeks) to balance out to the 7.5mg. I get a bit of a headache the first day or two but then it levels out and I can make the drop a bit easier. Will hold 5mg for 2 weeks then again alternate 2 to 5mg, two weeks. Then hold 2, two weeks then drop to the much desired 0! Been 2 years but this approach seems to be working better then standard tapering guidelines which have always been too fast for my body even when I haven't been on it for as extended a time.
 
I will have to ask my Doc about that approach. I go to see the endocrinologist next week about tapering down off the 5mg. They did cortisol testing and currently my adrenal glands are not functioning do to the long term steroid use but they are hopefully they will kick back in.
 
Hi all,
I definitely need to join in the prednisone hater-aid club. I just got restarted on prednisone during a 3 week hospital stay. I'm currently on 60mg oral after being on 90mg IV for 2 weeks. I also was started on remicade for the first time so (fingers crossed) I won't have to be on prednisone as long.
The last time I was on prednisone I had every mood/ irritability side effect, which made my job as a Psychiatric Nurse Practitioner very difficult. I was going manic along with my patients!
This time, I have Xanax and restoril on board to help prevent those manic symptoms. So, currently the only side effect that I am having is a ravenous appetite. Which I definitely need since I weigh under 100lbs at a height of 5'3".
Anyways, happy to join in the "fun" here and thanks for starting this group.

Maggie
 
Finally, after about the 5th attempt, I am off the dread Pred. Now if the chipmunk cheeks, the exhaustion and the pains would just go away... Actually, I am beginning to get some more much needed sleep! Sleeping! I can hardly believe it! Oh frabjous joy!
 
I never had the greatest attention span. Pred makes it soooo much worse. It's been long enough where I cant remember what life's like without it.

Never have I had so many partially started, half-finished projects/ chores/ tasks randomly sitting around like this. Good thing a short attention span and terrible short-term memory is considered an endearing trait by those who know me.
 
Question: I do not have Crohn's, but I was on Prednisone for years ... eventually running to decades.

This is one of the few places where it is discussed.

But I need to ask some questions.

I was on prednisone for year at from 15mg to 30mg a day. Yet, I had rages, and issues.

I had issues before prednisone, but I am wondering if prednisone exacerabates them

Had moon face, weight gain, munchies, could not stop talking, constantly angry, said things without thinking, incredibly impulsive, OCD.

Can these happen at that dose? Had problems before prednisone, but I wonder if prednisone made me psychotic.

Eventually got of prednisone after decades, but it took years to calm down. I wonder if it rewires the brain.
 
I was only on 30 for about a year and I had moon face, weight gain, sleeplessness, always hungry, an exhausted energizer bunny, short of patience. It is taking me months to recover. My s-I-l whose husband was off and on the stuff for years says it is months after you're off for the problems to go away. However, one does need too look at what bad habits one acquired while on the stuff. Best of luck to you
 
NotCrohn's said:
Question: I do not have Crohn's, but I was on Prednisone for years ... eventually running to decades.

This is one of the few places where it is discussed.

But I need to ask some questions.

I was on prednisone for year at from 15mg to 30mg a day. Yet, I had rages, and issues.

I had issues before prednisone, but I am wondering if prednisone exacerabates them

Had moon face, weight gain, munchies, could not stop talking, constantly angry, said things without thinking, incredibly impulsive, OCD.

Can these happen at that dose? Had problems before prednisone, but I wonder if prednisone made me psychotic.

Eventually got of prednisone after decades, but it took years to calm down. I wonder if it rewires the brain.
Click to expand...

Well it is a steriod. So who know what the long term effects can be.
 
NotCrohn's said:
Question: I do not have Crohn's, but I was on Prednisone for years ... eventually running to decades.

This is one of the few places where it is discussed.

But I need to ask some questions.

I was on prednisone for year at from 15mg to 30mg a day. Yet, I had rages, and issues.

I had issues before prednisone, but I am wondering if prednisone exacerabates them

Had moon face, weight gain, munchies, could not stop talking, constantly angry, said things without thinking, incredibly impulsive, OCD.

Can these happen at that dose? Had problems before prednisone, but I wonder if prednisone made me psychotic.

Eventually got of prednisone after decades, but it took years to calm down. I wonder if it rewires the brain.
Click to expand...

I've been hanging at 10mg and still seeing some of the more frustrating side effects regarding mood, shakiness, inconsistent energy levels but this time around there's been minimal moon face and no weight gain. Prednisone is a bit odd in how it processes - liver function can impact how prednisone is processed so I would guess little specifics like this is what can result in such a wide range of responses even within the same individual over a lifetime.

I do believe (I may be off on the number) anything over 5mg is considered a significant dose of prednisone since 5mg is the equivalent of what the body would usually produce an equivalent of.

Anything over 5mg can result in the side-effects and negative associations with prednisone including mood changes, energy changes, etc.

I have had issues with managing anger and having raging rants often resulting in breaking stuff or myself - but I find they're different when on prednisone. Without it my coping methods work during a rage - on prednisone it's like a wall seperates me from myself, complete control's lost, and no method works it will end when it ends.
 
NotCrohn's said:
Question: I do not have Crohn's, but I was on Prednisone for years ... eventually running to decades.

This is one of the few places where it is discussed.

But I need to ask some questions.

I was on prednisone for year at from 15mg to 30mg a day. Yet, I had rages, and issues.

I had issues before prednisone, but I am wondering if prednisone exacerabates them

Had moon face, weight gain, munchies, could not stop talking, constantly angry, said things without thinking, incredibly impulsive, OCD.

Can these happen at that dose? Had problems before prednisone, but I wonder if prednisone made me psychotic.

Eventually got of prednisone after decades, but it took years to calm down. I wonder if it rewires the brain.
Click to expand...
I was on it for s while and I puffed out as a result.
 
I had ibs most of my life with several sessions of duodenal and peptic ulcers. My brother got the ulcerative colitis and proctitis. He has had it for forty years and has had an amazingly good life just on sulfasalazine and prednisone suppositories. On flares he has a week of prednisone and is fine. Unfortunately he suffered a prolapse last year and had to have a sigmoid colon reconstruction. He still has problems with pain and irregular bowel habits. Mind you he is 71 now and his doc does not understand how he survived this long.
I missed out on the uc and Crohn's and went straight to stage 3 c colon cancer into six lymph nodes . Lost some colon and had chemotherapy. I have survived the cancer for 17 years but the chemo is still dogging me. I was diagnosed with minimal change disease of the kidneys. Unfortunately I had a rookie nephrologist. The treatment for MCD is prednisone. He had me on 75mg daily for nearly 18 months and another six months of taper. They weren't sure my adrenals were going to kick back in. I looked like humpty dumpty and to this day I don't know how I did not kill myself or someone else. I t is the most miserable drug I have ever been on and that includes chemo. It put me into type two diabetes and I lost 7cm in height and a lot of calcium . I have been taking calcium supplements for years but I still officially osteo penia. He got my kidney dx wrong it was not MCD and three kidney biopsies have not put a name to it. I am into nephrotic syndrome and untreated I lose up to seven grams of protein a day thru my urine. I have been on cyclosporine morning and night for over 18 months and it is keeping me alive. I have been diagnosed with auto immune kidney disease ,auto immune neuropathy, auto immune endocrine problems with low testosterone and under active thyroid. auto immune psoriatic arthritis and auto immune hepatitis. I was in a lot of pain so some well meaning doc ramped me up to 80 mg of oxycodone as Targin. I finished up with hypo algesia after two years. The oxy was causing more pain than it stopped. I am currently on a 32 week taper to get off it (I thought pred was bad) . All the time I have been on oxy I have had to take two dulcolax and two coloxyl with each dose to alleviate opiate induced constipation. It is not supposed to be a problem with targin but it is big time. I was told I could also take up to five sachets of movicol a day. What a wonderful lifestyle I lead. With hindsight I may not have had any treatment for the cancer. I have refused to take prednisone again except for a short time to see if I had auto immune hep. My liver functions dropped into the black immediately. My neph said he may use more if the hep flares. I just looked at him . No way I don't like pred and it don't like me. Ron.
 
I landed in the hospital a few weeks ago with a partial intestinal blockage.

They gave me the NG tube, painkillers, IV nutrients, pentasa... and NO steroids. Discharged on Thursday after three day stay, back to work the following Monday. :thumleft:

Contrast that with a similar episode two years ago - they gave 125mg of steroids 4x a day while in the hospital, no taper off period after discharge, my body was way out of whack and had to be on disability for 5 weeks. :thumbdown:
 
I had a job I really loved 😢 I got put on prednisone and flipped out on a customer. Of course I got fired. I'm normally a very nice person but prednisone makes me a psycho!!!!
 
Hi Everyone,

I am 22 days into a 2.5 month Prednisone taper (still on 45mg. Crohn’s symptoms (inability to eat, drink, blood and mucus in stool, nausea, vomiting )practically gone within 3 days of prednisone.

I am waiting on biologics but anyone have a new or returning flare a few weeks into treatment? My stress is reduced significantly since my ex left and I hoped I would be alright until the biologics.

I am not discouraged but wondering how many of you got a lot better on prednisone and regress again quickly?
 
Didn’t specify - the current flare is arthritis in the lower back and hips. Started yesterday and back to needing a walk aid already by this morning. Awake most of the night. Moving helps and heat pad. Anyone else have a regression after prednisone taper?
 
My arthritis returned with a major flare the moment I finished my pred taper. The only drug that actually helped with the arthritis was methotrexate but it had too many side effects and in the end I could not even use it as an injection. Cyclosporine helps my nephrotic syndrome but not my arthritis. It is seronegative polyarthritis believed to be psoriatic arthritis. I cant take any painkillers with my kidneys so I just have to put up with the pain. The pain is the least of my problems now as the arthritis is attacking my lungs and eyes . I have had a couple of serious run ins with pulmonary oedema and my eyes are always red when I wake up. They really seem to know stuff all about auto-immune diseases. They cant help you with them, they cant help you with cancer, they cant help you with neuropathy and they can't help with chronic pain. It seems the only people doctors can help are those with nothing wrong. Ron.
 
Thanks for the reply Ron. I tolerate the pain too and it is the least issue for me. I get so irritable when I am in severe pain and just isolate myself until it scales back. My ‘goal ‘ is to just be okay. Just well enough to enjoy being around people instead of hurting and trying to hide it. My face always gives it away though and it bothers me to see the way people that care hurt for me. It brings me down when it affects others and I rather nobody know how bad it is. I am accepting my health conditions finally and having my family back in my life makes it so much more bearable. I know it’s my own feelings of denial of being so ill. I have a great therapist and he helps me stay focused on the positives and not consume myself with protecting everyone else’s feelings about something I work so hard to manage on my own. I am not going to let my fear of meds prevent me from getting well ever again.

Sorry to be such a negative nelly this morning. So far I have no evidence of organ damage just osteoporosis starting. I am really self-disciplined and have a good day routine including a Pilates reformer for gentle joint and muscle movement, heat pads, rest as needed etc.

I am sorry you are having trouble with your lungs and eyes. The prednisone helped my eyes right away and I had my eyes tested a few days ago and the pressure was 17 on a ‘safe pressure scale ‘ ranging from 4-21 according to the ophthalmologist . I am seeing the eye surgeon in January for further testing but the doctor says there is no immediate risk just time to start monitoring for progression.

I hope you improve soon Ron. Eyes and lungs are tough to deal with. My cousin with autoimmune heart disease had a pacemaker two years ago and can’t taper below 50 mg prednisone for past 2.5 years. He contracted a cold or flu five weeks ago and can’t shake it. I feel for you guys that have such organ complications 😔

Thanks everyone for being on this forum. Having people that truly understand really helps feeling alone in this. This is my first Christmas ‘alone ‘ this year - but I don’t feel lonely anymore.

Reach out Ron over the holidays if you want to chat. Even just non sickness talk if it’s too taxing. I wish you well during the holidays 🎄🎄🎄🎄🎄🎄🎄
 
I feel for you rainbowchaser. All last summer I wished it was winter but as soon as the cold came I wished it was summer again. I live on the east coast of Australia just North of Brisbane. It never really gets cold here . I hate to think what I would be like in your winters. One of the legacies from my cancer chemo is severe neuropathy from the waist down. I would probably get frostbite for sure where you live. I am alone this Christmas and for the past ten years I have lived alone . I'm 67 now and it gets harder each year to manage all the day to day chores plus I still work four days a week. Funny I can still work but I can't do the things I love like fishing. Life is funny, Ron.(but not fun.)
 
Glad you don’t have these Canadian winters to deal with too! I have hope things will get better for me too. I am grateful for people that care for me helping me be strong instead of being treated like a burden. I know I have the strength to deal with whatever is ahead 😊 Take care Ron.
 

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