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03-22-2013, 08:19 PM   #1
SarahBear
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The Miserable Prednisonites Club

About this Support Group

Hi, everyone! Welcome to The Miserable Prednisonites Club!

This is a Support Group for those of us who are having or have had a rough time on steroids! Even if they helped you, feel free to join and vent about those pesky side effects!

As we all know, Prednisone has many side effects. These can include:
  • Insomnia
  • Increased appetite
  • Weight gain
  • Impaired wound healing
  • Moon face
  • Increased or slowed heart rate
  • Mood swings / irritability
  • Acne
  • Increased risk of infection
  • Fluid retention
  • Easy bruising
  • Increased blood sugar
  • Headache
  • Sweating
  • Just about anything else you don't want your body to do

The stories and experiences discussed within this thread are in no way meant to scare or deter someone from taking Prednisone. Everyone reacts differently, and this thread contains primarily the experiences of those who reacted negatively, and / or the negative side effects experience by those who reacted favorably. In the majority if cases, the benefits outweigh the risks.

So, join and let's all vent about Pred!

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Last edited by SarahBear; 03-25-2013 at 10:18 AM.
03-22-2013, 08:35 PM   #2
rollinstone
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Been on pred fr 6 months, am finally getting off it, currently on 10mg so I'm almosssst of it, i never gt moon face from it but I got the brutal munchies that never ended, and last 2 months got acne from it, can't wait to get off it
03-22-2013, 08:38 PM   #3
CrohnsChicago
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Does a false sense of superpowers and invincibility count as symptoms? Because it's really disappointing when you finally realize you had neither.
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03-22-2013, 08:39 PM   #4
SarahBear
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My experience:

I was put on Prednisone when I was diagnosed. I don't remember how long the taper was, but I was definitely on it for several months. Immediately, I started having problems sleeping. I might have been able to sleep a couple hours every three nights. My appetite increased incredibly (but at the time, this was great, as I had lost weight and desperately needed to gain it back). I had mood swings and crazy bursts of energy. At times, I'd talk so fast I would wear myself out and have to sit down. I developed moon face and looked like a puffy little chipmunk.

After a while, the sleep deprivation got to me and I started to hallucinate. Nothing serious - I mostly heard things, kind of a background noise. It would just sound as if a TV was left on in another room, but I'd go through the entire house looking for it and find nothing. If I asked someone else, they didn't hear anything. It would start and stop suddenly. It was very frequent. Eventually, I started seeing things as well, but again, nothing serious. I'd see things fall off a table or something, then go to pick them up and realize they had never been there.

When my GI heard about the hallucinations, she sped up my taper. However, when the dose was cut down it took all of my energy. I couldn't stand up on my own. The taper was slowed down again, to a speed in between the original taper and the sped-up version. This seemed to work, and soon the symptoms decreased and I started to feel better.

I actually ended up missing the majority of my junior year of high school due primarily to the side effects of Prednisone. Of course, Crohn's symptoms contributed, but the insomnia rendered me useless and was pretty much the deciding factor. I finished out the year on Home Bound (a program where you meet with your teachers once a week, outside of school).

It was an adventure.
03-22-2013, 08:46 PM   #5
CrohnsChicago
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I am hungry...A LOT on pred. I think about food more often than not. Sometimes I have crazy amounts of energy and I just need to find a way to expend it or I get very restless. I also get RLS off and on. I am currently a very mild moonface. I can go for days without any quality sleep because a pin drop can wake me up and keep me up or keep me from going to sleep to begin with. I also get other private issues associated with pred that I do not enjoy.

I get ridiculously irritable irritable. I have occasional mood swings. I get joint pains.

And at the same time it's the only thing that heals me fast and stops the bleeding

Blessing and a curse.
03-22-2013, 08:48 PM   #6
SarahBear
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Oh! And my boyfriend was given a short course of Pred after his wisdom teeth were taken out. It caused him to hiccup uncontrollably, of all things. Not exactly what you want after having your wisdom teeth removed!
03-22-2013, 08:52 PM   #7
rollinstone
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I'm gonna rejoice when I'm off it, iv been on imuran for coming up on 2 months now so my taper is going fortnightly, hopefully be off it completely in a month (I'm taking somewhat slow aswell because I need my adrenals to wake up)
03-22-2013, 09:03 PM   #8
amrycrohns
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I have to admit I am a huge fan of Pred., every time I have flared it has never let me down. I get some weight gain and don't sleep, but being symptom free is worth it for me. The long term side effects are semi scary, I just look at it from as positive manner. Be in bed in pain for weeks or roll the dice with a future issues.
I have been lucky to be able to come on and off it as needed without much issue. I feel bad for people that struggle with this drug as it is such a life saver for me.
03-22-2013, 09:06 PM   #9
SarahBear
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I'm glad it's been such a help to you, amrycrohns! You're very lucky!
03-23-2013, 06:49 AM   #10
UnXmas
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Is it alright to join if I was on pred. in the past but not now? (And hopefully won't be on again for a very long time! )

At first I actually liked pred because it gave me energy and euphoric feelings. But the longer I stayed on it the more side effects I got, and they became continuously worse over time. I could cope with all the side effects of prednisone that I experienced except for the insomnia and effects on mood. I hate not being able to sleep and I was so restless that I couldn't settle to anything. I was extremely anxious at times too.

But ultimately I am glad I took prednisone as it did what it was supposed to do and led to my doctor prescribing me medication for insomnia and anxiety that have been so sucessful that I've stayed on them even after stopping prednisone.
03-23-2013, 07:23 AM   #11
lsgs
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I am so fed up of pred! It was a lifesaver initially and the pain relief it has given me has been absolutely incredible but I am fatter, moodier and hairier than I ever have been! I started on an 80mg injection and 50mg taper last August and since then I've been getting the dose down, flaring, and having to taper again. Right now I'm on 25mg.

I really do love this drug in terms of symptom relief but I've been on it so long and at quite high doses so I'm starting to get worried. And my face just looks like a big football!

My rheumatologist says he wants me to stay on prednisolone long term rather than putting me on immunomodulators which I'm not sold on.
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03-23-2013, 09:05 AM   #12
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I am so fed up of pred! It was a lifesaver initially and the pain relief it has given me has been absolutely incredible but I am fatter, moodier and hairier than I ever have been! I started on an 80mg injection and 50mg taper last August and since then I've been getting the dose down, flaring, and having to taper again. Right now I'm on 25mg.
I have had a similar experience with pred. I've been on it for about 40 weeks now, fluctuating doses as other medications seem to not work. I've developed incredibly bad acne - to the point where it's painful to lie down as I have some sore spots on my head, behind my ears, back etc. I've started bruising really easy with regards. I have some deep purple bruises on my legs and such not.

It's helped me reduce my symptoms from Crohns but it is also awful!
03-23-2013, 10:23 AM   #13
Ya noy
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How about if misery caused by prednisone is indirect? Meaning that when my husband is on it, he becomes irrational and psychotic, making me, (and everyone else) miserable?

Yes, the prednisone worked miracles with Stevens-Johnson syndrome, while making him so irrational that he went ballistic on the hospital personnel, and billing department, until they finally decided to write-off the bill for his entire hospital stay--which is totally shocking, and I still can't fugure out how he managed to pull that one off.
03-23-2013, 10:51 AM   #14
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Don't overdo it with the pred ... I can't use it anymore because doctors found hip necrosis. Treatment options are a little more difficult once your pred days are over.
03-23-2013, 01:54 PM   #15
SarahBear
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UnXMas, absolutely! I'm not currently on it either, and hope never to be again!

Ya noy, of course!

lsgs, that does sound unusual. Like blazeking said, it's best to avoid staying on steroids long-term if at all possible. It can lead to osteoporosis (which we're already at a higher risk for) and other complications. Are you seeing a GI, and if so, what do they say?
03-23-2013, 07:18 PM   #16
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03-23-2013, 07:48 PM   #17
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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?
03-23-2013, 07:56 PM   #18
SarahBear
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Sweating is a normal side effect of Prednisone. I didn't have that one, myself though, so unfortunately I don't have any tips on dealing with it. Does anyone else?
03-23-2013, 08:06 PM   #19
CrohnsChicago
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nope. unfortunately sweating is one of those things that is out of your control...unless you opt for botox.....
03-24-2013, 02:42 AM   #20
lsgs
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I have had a similar experience with pred. I've been on it for about 40 weeks now, fluctuating doses as other medications seem to not work. I've developed incredibly bad acne - to the point where it's painful to lie down as I have some sore spots on my head, behind my ears, back etc. I've started bruising really easy with regards. I have some deep purple bruises on my legs and such not.

It's helped me reduce my symptoms from Crohns but it is also awful!
I agree the side effects especially the longer I'm on it are beginning to become unbearable. The trouble is that everytime I try to get off it I just get so poorly. I got down to 7mg and now I'm the middle of a 'flare'.

UnXMas, absolutely! I'm not currently on it either, and hope never to be again!

Ya noy, of course!

lsgs, that does sound unusual. Like blazeking said, it's best to avoid staying on steroids long-term if at all possible. It can lead to osteoporosis (which we're already at a higher risk for) and other complications. Are you seeing a GI, and if so, what do they say?
SarahBear, my rheumatologist fully admits he doesn't really know what he's doing and it's all guesswork. But I think he is overegging the risks of immunomodulators.

I had to 'fire' my GI due to him being completely disinterested. I rang him 2 weeks ago to say my steroid dosage wasn't working anymore and I was feeling really poorly and off work, what do I do, and his secretary phoned back to say it's not his problem, go to A&E if there's an issue!! My other doctors even say he is not interested in my case because it's not clear cut and easy. It's been a long time coming tbh, he's made a lot of errors along the way, including calling it all psychiatric and ignoring high faecal calprotectin/ESR I didn't know about!

But prior to me 'firing' him he indicated that he thought azathioprine would be my best bet, and that pred would carry more risks. And also my GP quite openly and forcefully said he thought keeping me on pred was more dangerous than aza!! Trouble is the only guy treating me at the moment disagrees :-/
03-24-2013, 06:12 AM   #21
UnXmas
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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?
I didn't sweat much (I don't generally) but I did get hot flushes when on prednisone. I took to keeping ice packs near me so when I suddenly became hot I could hold it to my head and immediately cool down. Might look a bit odd when you're out in public, but I mostly got hot flushes in the evening when I was usually just sitting watching tv with my family.
03-24-2013, 06:42 PM   #22
Jennifer
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Sharing my Pred story.

I've been on it a few times. First time was when I was 9. I was in 5th grade and was made fun of by other kids because I had a fat face but the rest of me wasn't. They called me fat anyway and would puff up their own cheeks and make faces at me.

Second time I took it was when I was around 14-15 and it made me retain so much water I had stretchmarks on my legs, breasts and armpits. I was horrified by how my body looked. Of course the mood face came with it as well. Love it when people stare at you in high school and giggle and smirk.

I took it a third time before my surgery when I was 16. Same old moon face. Had people point and laugh in my face and call me "fucking ugly." Really boosted my self esteem so I tried to kill myself and was committed to a psych hospital. Finally had surgery and went into remission.

Took it a 4th time for something non Crohn's related when I was in grad school. At that time I was on beta blockers for my irregular heart beat. The Prednisone made my heart even worse and I could not function. My cardiologist told me to stop taking it (was only taking it for 3 days). I felt so much better after being off it.

Now I only take Entocort if I need steroids. I'll only take Prednisone again if its a life threatening situation as I cannot deal with it messing up my heart again.

These stories aren't meant to scare people from taking a medication that could potentially save your life. Everyone has a love/hate relationship with Prednisone.


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Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
03-24-2013, 08:40 PM   #23
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I've been on and off Prednisone since diagnosis in Oct 2011, in varying dosages some as high as 40mg a day for several months (eww, side effects). Never been able to be off it for longer than a month as the inflammation keeps creeping back. So far other meds I've tried have been Asacol from Oct '11 to May '12, Imuran from May '12 to present and I'm actually having my first Humira dosage tomorrow - hoping with the combo of Humira and Imuran I can get some results and see the last of Pred for a while! I'm on 10mg tapering down to 5 on Wednesday and hopefully to zero the following Wednesday.

I've definitely become steroid dependent in the last year and Pred does keep my Crohn's symptoms at bay. My side effects differ from course to course but I've experienced moon face, acne, weight gain, mood swings, night sweats, insomnia, euphoria and increased appetite. Currently I'm not having too bad a time but this is only a five week course starting at 25mg, so the side effects aren't as bad. The only one that I've noticed is insomnia, I try and counter this with listening to a meditation app on my phone in bed, it plays classical music and I usually nod off pretty soon - very relaxing! I found that when I was on the Internet a lot just before bed my brain would be buzzing and awake so I've tried to stop that - a good book and some relaxing music is much better for me! ♫
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03-25-2013, 10:12 AM   #24
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I'm on a round of it right now and I feel like I'm going to have a heart attack. My heart has been racing, I have pain in my chest and I have no desire to eat. Yes, prednisone has a very different effect on me than most. I have no desire to eat. Of course, isn't eating what got me here in the first place??? That's a whole other set of aggravations.
03-25-2013, 06:15 PM   #25
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I agree the side effects especially the longer I'm on it are beginning to become unbearable. The trouble is that everytime I try to get off it I just get so poorly. I got down to 7mg and now I'm the middle of a 'flare'.
Indeed. I've tried to get down and off it several times, but feel worse along side every time. It's like you can't win. Currently I'm able to play dot to dot on my face due to acne, with around 20/30 dots.
03-25-2013, 06:17 PM   #26
jackwhiting
 
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Sharing my Pred story.

I've been on it a few times. First time was when I was 9. I was in 5th grade and was made fun of by other kids because I had a fat face but the rest of me wasn't. They called me fat anyway and would puff up their own cheeks and make faces at me.

Second time I took it was when I was around 14-15 and it made me retain so much water I had stretchmarks on my legs, breasts and armpits. I was horrified by how my body looked. Of course the mood face came with it as well. Love it when people stare at you in high school and giggle and smirk.

I took it a third time before my surgery when I was 16. Same old moon face. Had people point and laugh in my face and call me "fucking ugly." Really boosted my self esteem so I tried to kill myself and was committed to a psych hospital. Finally had surgery and went into remission.

Took it a 4th time for something non Crohn's related when I was in grad school. At that time I was on beta blockers for my irregular heart beat. The Prednisone made my heart even worse and I could not function. My cardiologist told me to stop taking it (was only taking it for 3 days). I felt so much better after being off it.

Now I only take Entocort if I need steroids. I'll only take Prednisone again if its a life threatening situation as I cannot deal with it messing up my heart again.

These stories aren't meant to scare people from taking a medication that could potentially save your life. Everyone has a love/hate relationship with Prednisone.
Sorry to hear that, sounds awful. People can be mean about things, have no consideration for how people would feel.
03-27-2013, 10:23 AM   #27
SarahBear
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I'm on a round of it right now and I feel like I'm going to have a heart attack. My heart has been racing, I have pain in my chest and I have no desire to eat. Yes, prednisone has a very different effect on me than most. I have no desire to eat. Of course, isn't eating what got me here in the first place??? That's a whole other set of aggravations.
That's very interesting that it's made you lose your appetite! While I was on Pred, I developed a constant stomach ache. Since I was hungry that entire time also, that specific kind of stomach pain now makes me think I'm hungry.

Have you spoken to your doctor about the chest pain?
03-27-2013, 01:26 PM   #28
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Having flare, pred has work with previous flare but being 40 mg nearly 2 weeks has made any different.
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03-27-2013, 03:31 PM   #29
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I don't know if I should join this club - I have been on pred, but it was pure amazingness, so miserable is not descriptive of my experience. I was only ever on pred for a short amount of time (10 mg a day for 5 days to see if I'd respond to it - then later my GI started me on a 20 mg taper but stopped me after 6 days of that so I could undergo more testing). I was never on pred long enough to really experience the bad side effects, lucky for me.

I did experience super powers and euphoria though! Those first 5 days that I was on pred, they were pretty much the best days ever. I was ill and flaring and my doctors didn't know what was wrong with me. I ended up seeing a different GP than I usually see, and this doc was terrible (telling me I have IBS and that I "look depressed"). I was so sick and had enough and put my foot down and demanded to try pred. The GP made me try some IBS meds first (that didn't work) and then he let me try 10 mg of pred. I had no expectations of it, but within the first hour of taking my first pred pill, I noticed that the music on my car stereo sounded absolutely awesome that morning. I found myself bopping my head and singing along, and I seriously never do that! (I may sing along but I do not bop my head, particularly not first thing in the morning on my way to work.) By the end of that first day, my symptoms were gone and I felt magical. I wanted to be in a musical, I felt like busting out into song and dance. I felt like a million bucks! And I had so much energy that I couldn't sleep, but I felt so fabulous that I didn't even care. Those were the best 5 days!

Of course, as soon as I stopped that very short run of pred, my symptoms all came back with a vengeance. 5 days at 10 mg was not enough to put me into remission so it all came back. That sucked! But I swear, I became Wonder Woman when I was on pred. So much energy and felt so great, I cannot complain about that wonderful stuff.
03-27-2013, 07:40 PM   #30
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Join Date: Sep 2012
Location: Newcastle, United Kingdom
I don't know if I should join this club - I have been on pred, but it was pure amazingness, so miserable is not descriptive of my experience. I was only ever on pred for a short amount of time (10 mg a day for 5 days to see if I'd respond to it - then later my GI started me on a 20 mg taper but stopped me after 6 days of that so I could undergo more testing). I was never on pred long enough to really experience the bad side effects, lucky for me.

I did experience super powers and euphoria though! Those first 5 days that I was on pred, they were pretty much the best days ever. I was ill and flaring and my doctors didn't know what was wrong with me. I ended up seeing a different GP than I usually see, and this doc was terrible (telling me I have IBS and that I "look depressed"). I was so sick and had enough and put my foot down and demanded to try pred. The GP made me try some IBS meds first (that didn't work) and then he let me try 10 mg of pred. I had no expectations of it, but within the first hour of taking my first pred pill, I noticed that the music on my car stereo sounded absolutely awesome that morning. I found myself bopping my head and singing along, and I seriously never do that! (I may sing along but I do not bop my head, particularly not first thing in the morning on my way to work.) By the end of that first day, my symptoms were gone and I felt magical. I wanted to be in a musical, I felt like busting out into song and dance. I felt like a million bucks! And I had so much energy that I couldn't sleep, but I felt so fabulous that I didn't even care. Those were the best 5 days!

Of course, as soon as I stopped that very short run of pred, my symptoms all came back with a vengeance. 5 days at 10 mg was not enough to put me into remission so it all came back. That sucked! But I swear, I became Wonder Woman when I was on pred. So much energy and felt so great, I cannot complain about that wonderful stuff.
I'm glad you had a good time with Pred, you are one of the lucky ones then! I've been on it for about 40 weeks now, and want to get off it bad. Acne is my worst side effect I can't touch my face anymore without being in pain.
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