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The Miserable Prednisonites Club

SarahBear

Moderator
Location
Charleston,
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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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 :(
 

CrohnsChicago

Super Moderator
Does a false sense of superpowers and invincibility count as symptoms? Because it's really disappointing when you finally realize you had neither. :p
 

SarahBear

Moderator
Location
Charleston,
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. :p 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. :p
 

CrohnsChicago

Super Moderator
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.
 

SarahBear

Moderator
Location
Charleston,
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!
 
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)
 
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.
 

UnXmas

Banned
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! :p )

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.
 
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.
 
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!
 
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.
 
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.
 

SarahBear

Moderator
Location
Charleston,
UnXMas, absolutely! I'm not currently on it either, and hope never to be again! :p

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?
 
Location
ny
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?
 

SarahBear

Moderator
Location
Charleston,
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?
 
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! :p

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 :-/
 

UnXmas

Banned
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.
 

Jennifer

Adminstrator
Location
SLO
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.


aweis
 
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! ♫
 
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. :eek2:
 
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.
 
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.
 

SarahBear

Moderator
Location
Charleston,
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. :eek2:
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. :p

Have you spoken to your doctor about the chest pain?
 

Cat-a-Tonic

Super Moderator
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 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.
 
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.
That is awful! I've had to put up with a lot of attention about my weight because I was so skinny before. My nickname in work for a while was 'chubbs' then eventually I think they sensed it wasn't funny anymore and stopped after the millionth time! I can't imagine having to go through it during high school, that must just be awful!

I have horrendous heart palpitations on pred, so distracting I can't function for hours. I saw my GP about it and she looked at me like I was nuts for even worrying about it!
 

Jennifer

Adminstrator
Location
SLO
Anyone mainly women having problem with they breasts? pain or swelling?
Yes. I have stretchmarks or my breasts from high doses of Prednisone. Not huge/noticeable ones but small ones. Got them when I got stretchmarks everywhere else (inside of knees, calves, inner and outer thighs, and armpits). The swelling alone can cause pain.
 
Yes. I have stretchmarks or my breasts from high doses of Prednisone. Not huge/noticeable ones but small ones. Got them when I got stretchmarks everywhere else (inside of knees, calves, inner and outer thighs, and armpits). The swelling alone can cause pain.
One side seem fuller and rounding then other, only be taking pred just under 2 weeks. i had slightly pain and previously before. So I am not sure if something do with slightly curve in my back.

Thank you relpy.
 
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UnXmas

Banned
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. :eek2:
I had no appetite either, and lost weight while on prednisone. It does happen!

Jennifer: I'm sorry to hear you've had such awful experiences.

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.
I think it's vital people talk about the negative experiences as well as the positive ones. A "love/hate relationship" seems to sum up this med. very well.
 
I'm glad I found this club. Pred. sucks! I actually lost weight while on it. It made my stomach better, but made me so jittery I couldn't eat and I couldn't hold a conversation and cried all the time. If anyone talked too loud it sent me over the edge. My family thought I was crazy. Forget sleeping. I thought I was having a heart attack. Couldn't concentrate to pay bills or get my kids to places on time. It made my fingers numb. 40mg gave me headaches, my eyes hurt. Every time I saw my doctor, I had a long list. I tell people it's like having a 100 cups of coffee a day.

My current med is failing and I'm afraid to go back to the doctors and go back on Pred. Does it get better? Why do some people have such a bad reaction and others think they're superhuman? Is Entocort(sp?) better? Cheryl
 

UnXmas

Banned
My current med is failing and I'm afraid to go back to the doctors and go back on Pred. Does it get better? Why do some people have such a bad reaction and others think they're superhuman? Is Entocort(sp?) better? Cheryl
I don't think there's anyway of knowing if side effects will get better. I've read some people say their side effects improved the longer they were on it, but for me it got worse as it went along.
 

SarahBear

Moderator
Location
Charleston,
My current med is failing and I'm afraid to go back to the doctors and go back on Pred. Does it get better? Why do some people have such a bad reaction and others think they're superhuman? Is Entocort(sp?) better? Cheryl
Side effects should decrease both as you taper and as your body gets more used to the medication. Entocort is better as far as side effects are concerned - it affects the digestive tract rather than the whole body, as Prednisone does. So it usually is easier to handle. However, it's my understanding that Pred is more effective.
 

Jennifer

Adminstrator
Location
SLO
Entocort is meant to treat the ileum and ascending colon. If you're affected further down than the ascending colon, then Entocort will not work for you.

Also, I have yet to do research on this myself but I've heard from people I respect that Prednisone does more harm than good for people with Crohn's yet works very well for people with Colitis. Like I said, I have to do some research on it.

Its nice that Prednisone has so many uses such as releasing throughout the whole body helping with joint pain and other health problems. All medication is trial and error though. Prednisone may work for many but not for everyone. For me since my Crohn's has been located in the ileum then I take Entocort instead if steroids are needed.
 
I'm off to the docs tomorrow to demand to come off pred and onto something else! Don't think it will go down too well but I have had enough! Did any of you guys find the more you used pred the less effective it became? I seem to have had little to no benefit from my latest taper, just all the side effects. I'm back to having near continuous pain :(
 
Usually when you taper you are on another medication, so if symptoms return the primary or main medication they are trying to put you on may not be working. When I went on HUmira again I took Prednisone through the loading phase, and currently tappering for what seems like 12th time in 3 years. I have been told if you taper to quickly you can have issues also, I am guessing this varies with individuals as I have yet to have a issue going 40,30,20,10 done. Yet others talk about have to take as small as 1mg dose's for awhile and still struggling to get off.
 
Usually when you taper you are on another medication, so if symptoms return the primary or main medication they are trying to put you on may not be working. When I went on HUmira again I took Prednisone through the loading phase, and currently tappering for what seems like 12th time in 3 years. I have been told if you taper to quickly you can have issues also, I am guessing this varies with individuals as I have yet to have a issue going 40,30,20,10 done. Yet others talk about have to take as small as 1mg dose's for awhile and still struggling to get off.
With regards to this, I'm currently on 2mg a day, been tapered off 1mg a week, horrendous trying to get off.
 
Usually when you taper you are on another medication, so if symptoms return the primary or main medication they are trying to put you on may not be working. When I went on HUmira again I took Prednisone through the loading phase, and currently tappering for what seems like 12th time in 3 years. I have been told if you taper to quickly you can have issues also, I am guessing this varies with individuals as I have yet to have a issue going 40,30,20,10 done. Yet others talk about have to take as small as 1mg dose's for awhile and still struggling to get off.
The problem is it's my rheumatologist who is treating me and he openly admits he likes to sit on the fence and my treatment is mostly guesswork because they haven't got it on a scan yet, only in bloods and stool tests. He said I would have to 'nag' him to get on anything else, which is exactly what I'm going to do today. I'm quite scared of going on aza because of the initial nausea/flu like symptoms but the weight gain/hairiness/tremor/palpitations with pred is a joke too.

With regards to this, I'm currently on 2mg a day, been tapered off 1mg a week, horrendous trying to get off.
The lowest I've managed to get to was 7mg :( Does it get worse as you get closer to 0?
 
I was reluctant to go on Aza at first but I'm so glad I did, I still had blood in stool even on like 5 months of pred, Aza took it away almost immediately after starting (and I know it's supposed to take 3 months to work) but it couldn't just be an coincidence. I'm hoping my taper will be good, iv been on pred since October, I go to 7.5 tomorrow, then 5s two weeks later then 2.5 then off
 
I was reluctant to go on Aza at first but I'm so glad I did, I still had blood in stool even on like 5 months of pred, Aza took it away almost immediately after starting (and I know it's supposed to take 3 months to work) but it couldn't just be an coincidence. I'm hoping my taper will be good, iv been on pred since October, I go to 7.5 tomorrow, then 5s two weeks later then 2.5 then off
Good to hear! I know you've struggled a bit with nausea and fatigue, how bad was it? I don't deal particularly well with nausea and I'm worried I'm going to be off work, my job means I have to be functioning well to perform.
 
I've been on pred for 4 weeks so far. Started 40mg, then went down to 30mg and now on 20mg. Starting to get the pains again. Just niggles here and there, but that feeling like it's about start all over again NOOOOOO...So the pred has definitely helped me so far.

Side effects...definitely noticing I am more aggressive and I get bursts of energy where I feel like I could punch something or lift something heavy lol... my fiance has suggested a boxing bag haha...and I find it extremely hard to get to sleep. Usually takes a good 4 - 5 hours to fall asleep...argghhh...BUT i would rather all this than the Crohn's symtoms. Unfortunately though...I think they're coming back :(
 
Finished this latest course of Pred, it will take a few weeks to leave my system but I'm off them as of today! So far Humira seems to be helping a lot but time will tell once the steroids wear off whether it can keep my symptoms from returning.

I saw my endocrinologist today, I don't have to go on medication to improve my bone density since I'm now off the Pred, which is great (I didn't want to go on another medication with yet more side effects). I can stick to vitamin D supplements, calcium from my diet and weight-bearing exercise. But if I have to go back on Pred then I'll need this other medication as well. All the more reason to say goodbye to Pred long term!! Fingers and toes crossed!! x
 

Jennifer

Adminstrator
Location
SLO
Usually takes a good 4 - 5 hours to fall asleep...argghhh...
Just wondering if you've been taking Prednisone in the morning or not. Many have mentioned that taking it in the morning can help with the insomnia side effect. If you've already doing this, I'm sorry. *HUGS*
 
Hey Jennifer, yeah I take it first thing in the morning when I wake up and have breakfast :( :( :( Usually by 1.30pm onwards i have burst on energy until about 6pm and then after that just awake. Hopefully will get better :)
 

UnXmas

Banned
Hey Jennifer, yeah I take it first thing in the morning when I wake up and have breakfast :( :( :( Usually by 1.30pm onwards i have burst on energy until about 6pm and then after that just awake. Hopefully will get better :)
I also found it didn't help to take it early in the morning. I ended up taking a sleeping aid instead, which worked.
 
Good to hear! I know you've struggled a bit with nausea and fatigue, how bad was it? I don't deal particularly well with nausea and I'm worried I'm going to be off work, my job means I have to be functioning well to perform.
It was bad enough to not be able to function but not bad enough that I ever once came close to vomiting. You can get anti nausea tablets until it subsides
 
Being 35 mg instead monday, feeling lot better, more energy, sleep better and went GP today. Got acne cream and appointment in week and half for exam of chest.
 

SarahBear

Moderator
Location
Charleston,
Just wondering if you've been taking Prednisone in the morning or not. Many have mentioned that taking it in the morning can help with the insomnia side effect. If you've already doing this, I'm sorry. *HUGS*
Do most people take it once a day? I remember being instructed to take it twice daily, morning and night.
 
The lowest I've managed to get to was 7mg :( Does it get worse as you get closer to 0?
I'd like to say no, but for me it has gotten much worse. I've had no appetite, and sleepless nights with only a few hours if lucky. I'm become demotivated to do a few things, and that mixed with the effects of my mtx isn't going down too well, went to the doctors for some help they shrugged me off for 2 weeks!

I've been tapered and then back on, and off and on, so until i'm off properly there isn't much hope!
 
It was bad enough to not be able to function but not bad enough that I ever once came close to vomiting. You can get anti nausea tablets until it subsides
I vomited several times, took anti-nausea tablets, they made me vomit twice as much! - They don';t seem to settle with me, so I had to just bare with half the throwing up. Take pred before sleeping now to try not feel as sick.
 

Jennifer

Adminstrator
Location
SLO
Do most people take it once a day? I remember being instructed to take it twice daily, morning and night.
The dose can be split up. I've heard it mentioned that this can help with reducing side effects (dunno how true that is, or what side effects that works for) and may help you taper with fewer issues (again, not sure how true that is either). I took it once a day at night with the rest of my medication (anytime my doses get split up I forget to take it at some point, I'm only trained for night time meds :p).
 
I've just posted a thread ranting away because I hadn't seen this one before!

I've really suffered from the weight gain side of things :( 9kg in 5 weeeks :(
I also get clammy hands and the shakes.
At first I was thinking, it's ok 'cause as soon as I've finished with the steroids I'll be able to lose weight a bit more easily. But now, my symptoms are starting to show again so I'm worried I'm going to have to be put back on them!

I feel so stupid complaining of weight gain but I have never been this "big" before and I just don't know how to handle it :(
 

SarahBear

Moderator
Location
Charleston,
I just replied to your thread. :p

The weight gain can really be hard to adapt to, especially when you're used to being a certain weight. It definitely threw me off when I gained on Pred, but I lost all that fairly quickly once I stopped so I didn't worry about it much (although I'm glad I wasn't going to school at the time, because none of my jeans fit :p ). I weigh a little bit more than that now that I've gone into remission, and that is really hard to get used to.

In your situation, it sounds as if your maintenance medication might need to be changed or altered a bit. You shouldn't be on steroids long-term, so your GI should be actively trying to get you off of them.

:hug:
 

Artisan105

Yondaime
I've just posted a thread ranting away because I hadn't seen this one before!

I've really suffered from the weight gain side of things :( 9kg in 5 weeeks :(
I also get clammy hands and the shakes.
At first I was thinking, it's ok 'cause as soon as I've finished with the steroids I'll be able to lose weight a bit more easily. But now, my symptoms are starting to show again so I'm worried I'm going to have to be put back on them!

I feel so stupid complaining of weight gain but I have never been this "big" before and I just don't know how to handle it :(
Yea... Hang in there. Maybe you don't have to take Prednisone/ Steroids again but if you are having a flare/ pain/ blood in stool/ etc. Alexy it is better to take the medicine, even though it makes you chubby- water weight - especially in the face, you want get better first. Your health is more important than physical image.

I never been fat before, but the prednisone after taking it for a while got me to have this chubby (hamster face) and I put on water weight. I am 5'10 weight 155lbs but when I had a flare up I went down to 125lbs but when I am on the steroids I went up to 175lbs. -_- I know it sucks because your friends give you that look at you? Or you don't want to go out afterwards but like I said before, your health is more important than your physical appearance. :)

Ttyl
 

Artisan105

Yondaime
I vomited several times, took anti-nausea tablets, they made me vomit twice as much! - They don';t seem to settle with me, so I had to just bare with half the throwing up. Take pred before sleeping now to try not feel as sick.
What did you take? Zolfran or Phen? Yea tell your doctor of your nausea. If you keep throwing up than there is a medicine that goes up the other way -_- If all fails there is some people who took medical marijuana and was successful. Hope you get better.
 
Yea... Hang in there. Maybe you don't have to take Prednisone/ Steroids again but if you are having a flare/ pain/ blood in stool/ etc. Alexy it is better to take the medicine, even though it makes you chubby- water weight - especially in the face, you want get better first. Your health is more important than physical image.

I never been fat before, but the prednisone after taking it for a while got me to have this chubby (hamster face) and I put on water weight. I am 5'10 weight 155lbs but when I had a flare up I went down to 125lbs but when I am on the steroids I went up to 175lbs. -_- I know it sucks because your friends give you that look at you? Or you don't want to go out afterwards but like I said before, your health is more important than your physical appearance. :)

Ttyl
Thanks :) I know my health is more important and to be honest I know that weight gain is worth the absence of pain :)
I just never imagined the weight gain to be this bad ... I guess it'a a bit of a shock to the system more than anything!
 

Artisan105

Yondaime
Thanks :) I know my health is more important and to be honest I know that weight gain is worth the absence of pain :)
I just never imagined the weight gain to be this bad ... I guess it'a a bit of a shock to the system more than anything!
Yea I totally agree. My baby niece was like, " Are you under there Uncle Steven?" I thought I was gonna die! And all my friends made fun of me at first because they are jerks lol but they were just joking around: but it did hurt me a lot inside because now for the first time I was self-conscious about myself.

The first time is always a shocker... And after you think you are getting well, you picture the same hard road ahead of you that you must go through again. Yea it does suck -_-

Hang in there! You know who you are. You know how you are suppose to look. It is only temporary. Just heal up. :)
 
What did you take? Zolfran or Phen? Yea tell your doctor of your nausea. If you keep throwing up than there is a medicine that goes up the other way -_- If all fails there is some people who took medical marijuana and was successful. Hope you get better.
Medical marijuana isn't legal in the UK. I cannot remember i've been on three different kinds and every one I threw up, ha. They just don't seem to settle ot me.
 

Artisan105

Yondaime
Medical marijuana isn't legal in the UK. I cannot remember i've been on three different kinds and every one I threw up, ha. They just don't seem to settle ot me.
Oh I am sorry for bringing that up. :( I didn't know it was still illegal in the UK. It is legal in some states in the US. Hmmm So did you try the Zolfran through the butt -_- I know it sounds nasty but if you can't swallow anything it is the only option right now for you. Ask your doctor about it. He will give it to you. Hang in there bud!
 
Oh I am sorry for bringing that up. :( I didn't know it was still illegal in the UK. It is legal in some states in the US. Hmmm So did you try the Zolfran through the butt -_- I know it sounds nasty but if you can't swallow anything it is the only option right now for you. Ask your doctor about it. He will give it to you. Hang in there bud!
No worries, no still illegal. No not tried any of that, I gave up on them and just changed when i took my Pred which helped, taking it just before I sleep meant I slept through the sick feeling. Cheers.
 

Artisan105

Yondaime
No worries, no still illegal. No not tried any of that, I gave up on them and just changed when i took my Pred which helped, taking it just before I sleep meant I slept through the sick feeling. Cheers.
I heard tea works good too :] Get the decaffeinated one. Get some rest. Ttyl Bro.
 

SarahBear

Moderator
Location
Charleston,
Ginger and peppermint are calming to the stomach as well. It seems pretty basic, but ginger ale or tea can help a lot with nausea. Have you tried those?

Also, when I took Phenergan, I took it as a dissolvable tablet. Did you have a different form? With a dissolvable tablet, you wouldn't need to worry about throwing it back up.
 
I've just posted a thread ranting away because I hadn't seen this one before!

I've really suffered from the weight gain side of things :( 9kg in 5 weeeks :(
I also get clammy hands and the shakes.
At first I was thinking, it's ok 'cause as soon as I've finished with the steroids I'll be able to lose weight a bit more easily. But now, my symptoms are starting to show again so I'm worried I'm going to have to be put back on them!

I feel so stupid complaining of weight gain but I have never been this "big" before and I just don't know how to handle it :(
I'm struggling with the exact same thing. I got away with the weight gain for months then all of sudden I've gained 30lb in a couple of months. I feel huge as I was pretty skinny before. The moon face makes me seem even bigger as well. And the facial hair just put the final nail in the coffin of my self esteem!!! I'm actually embarrassed to meet people. Wish I could walk around with a big sign around my neck saying I'm not fat, it's the steroids!!!

I was overweight before I got ill and I kept all my old clothes anticipating one day I'd put the weight back on when I got well, we call it my 'fat box'. It has come in very handy now!
 
I'm struggling with the exact same thing. I got away with the weight gain for months then all of sudden I've gained 30lb in a couple of months. I feel huge as I was pretty skinny before. The moon face makes me seem even bigger as well. And the facial hair just put the final nail in the coffin of my self esteem!!! I'm actually embarrassed to meet people. Wish I could walk around with a big sign around my neck saying I'm not fat, it's the steroids!!!

I was overweight before I got ill and I kept all my old clothes anticipating one day I'd put the weight back on when I got well, we call it my 'fat box'. It has come in very handy now!
Yeah I totally agree with the "I'm not fat it's the steroids" sign! My whole life everyone was like "I wish I could be a slim as you" or "I hate how you never seem to gain a kilo" or "you've got such a flat stomach"... So it's really weird when people are like "stop worrying you're in the average..." :(
 
Not sure if Pred as well should be, found wart last night, ulcer today and sharp in bottom of ribs also very nausa.
Flaring is still go.
 
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CrohnsChicago

Super Moderator
So serious question, does anyone get a sense that they have lost who they are on Prednisone?

I feel like since diagnosis, I have struggled with an mild identity crisis that I can't decide is a part of growing older, caused by prednisone, or just a result of dealing with the stress of crohn's in general. The most concerning thing to me is that I feel like over the past year, being on and off prednisone, I have become significantly more irritable and triggered person. I know these are common symptoms of prednisone (which I am currently on for the 3rd time in a year), but I am at a point where I wonder how much of this is actually the prednisone now and will it ever go away or will this attitude become a part of who I am?....I don't want to be an angry irritable person, I was a bit of an irritable/anxious person prior to this diagnosis and medication (I was previously diagnosed with GAD), but this is different.


I love people and have always been a caring/helpful/social/people person with the occasional need to pull myself away from them due being overwhelmed. But I find it is sometimes harder now to be around them and tolerate them. Moreso now I put myself in the social situations that make me feel good, but I sometimes do the bare minimum to interact with others around me and I can tell folks think I am a bit standoffish.

I'm really just hoping that this feeling goes away when I get off of the pred and doesn't become a habit or infused into my personality permanently.

And I hope this made sense to you all. It's something I've been thinking about lately that is starting to bother me internally.
 

Artisan105

Yondaime
So serious question, does anyone get a sense that they have lost who they are on Prednisone?

I feel like since diagnosis, I have struggled with an mild identity crisis that I can't decide is a part of growing older, caused by prednisone, or just a result of dealing with the stress of crohn's in general. The most concerning thing to me is that I feel like over the past year, being on and off prednisone, I have become significantly more irritable and triggered person. I know these are common symptoms of prednisone (which I am currently on for the 3rd time in a year), but I am at a point where I wonder how much of this is actually the prednisone now and will it ever go away or will this attitude become a part of who I am?....I don't want to be an angry irritable person, I was a bit of an irritable/anxious person prior to this diagnosis and medication (I was previously diagnosed with GAD), but this is different.


I love people and have always been a caring/helpful/social/people person with the occasional need to pull myself away from them due being overwhelmed. But I find it is sometimes harder now to be around them and tolerate them. Moreso now I put myself in the social situations that make me feel good, but I sometimes do the bare minimum to interact with others around me and I can tell folks think I am a bit standoffish.

I'm really just hoping that this feeling goes away when I get off of the pred and doesn't become a habit or infused into my personality permanently.

And I hope this made sense to you all. It's something I've been thinking about lately that is starting to bother me internally.
Yea... I think you are totally correct. But not just Prednisone but also the pain meds made me more irritable. I never get mad but with these meds in my system I had a short fuse.

After remission you slowly become your normal self.
 

Jennifer

Adminstrator
Location
SLO
@ CrohnsChicago - Its definitely the Prednisone. That side effect does go away. The short fuse plus depression didn't stick with me once it was out of my system. Kind of reminds me of if you haven't eaten in a while. I get irritable if I waited a long time to eat something but once I do that behavior doesn't stick with me afterwards.
 

UnXmas

Banned
So serious question, does anyone get a sense that they have lost who they are on Prednisone?

I feel like since diagnosis, I have struggled with an mild identity crisis that I can't decide is a part of growing older, caused by prednisone, or just a result of dealing with the stress of crohn's in general. The most concerning thing to me is that I feel like over the past year, being on and off prednisone, I have become significantly more irritable and triggered person. I know these are common symptoms of prednisone (which I am currently on for the 3rd time in a year), but I am at a point where I wonder how much of this is actually the prednisone now and will it ever go away or will this attitude become a part of who I am?....I don't want to be an angry irritable person, I was a bit of an irritable/anxious person prior to this diagnosis and medication (I was previously diagnosed with GAD), but this is different.


I love people and have always been a caring/helpful/social/people person with the occasional need to pull myself away from them due being overwhelmed. But I find it is sometimes harder now to be around them and tolerate them. Moreso now I put myself in the social situations that make me feel good, but I sometimes do the bare minimum to interact with others around me and I can tell folks think I am a bit standoffish.

I'm really just hoping that this feeling goes away when I get off of the pred and doesn't become a habit or infused into my personality permanently.

And I hope this made sense to you all. It's something I've been thinking about lately that is starting to bother me internally.
I think I understand what you mean. I certainly get how medications can cause personality changes and bring up identity issues.

On pred I had occaisonal bouts of euphoria. I'd experienced similar feelings on morphine, and I knew it wasn't logical to feel good, but I knew straight away it was a side effect of the pred.

I was also incredibly bored while I was on prednisone. I'd assumed this was due to the insomnia causing me to have more hours of the day to fill, combined with having energy from the pred and nothing to do with it because I was on sick leave from work.

But when my doctor prescribed me amitriptyline to deal with the insomnia (it's an anti-depressent, but sedation is one of its effects so it's also prescribed to help with sleep), it also had the effect of countering the anxiety caused by prednisone, and I realised that it wasn't all the free hours I had to fill that had been making me so miserably bored, it was because the prednisone had been making me so restless I'd been unable to concentrate on any activity enough to really get into it. So I'd been attempting to read, watch tv, chat online, etc., but had felt too distracted to get into anything. Once the amitriptyline began countering the restlessness caused by pred., I was able to relax and enjoy things again.

I had terrible anxiety from prednisone too. I'd have these abstract feelings that something terrible was going to happen, though I could never say exactly what. I generally got these feelings in the evenings when it got dark and I was tired.

These are more mood changes than identity issues, but I was certainly pretty messed up by pred. The amitriptyline dealt with the worst of it, but the evening anxiety attacks continued until I'd tapered of prednisone. Once I was off it, all the weird moods disappeared pretty fast. I've continued taking amitriptyline because it was helping with my natural tendencies towards anxiety that are nothing to do with pred. My family commented that I seemed so much more relaxed and that I'm nicer to be around, and the amitriptyline actually makes me feel more "myself"!

I hope it reassures you a bit to know that you should feel better again once you're off the pred. It may be worth talking to a doctor about your mood swings if you're open to treating them with medications. I didn't look into it myself, but if you don't like the idea of more meds, perhaps there are alternative or natural treatments that address the mood changes. Or if you can put up with it for the duration of your time on pred., it should normalise once you're off. It may also help to tell people a bit of what you're going through if you haven't already, so they can understand that if you're not your usual self, it's due to medication and not you (and that it's not something they've done to irritate you).
 
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@ CrohnsChicago, yes I definitely know what you're talking about, but for me it was more to do with the combination of my surroundings and the medication, as they both contributed to those feelings. The first year I was diagnosed and on Prednisone I had just moved to the UK and was very homesick, and on top of that split up with my boyfriend of 3.5 years, who I had gone traveling with, so it was a stressful year all round.

I felt like Crohn's had changed me, I lost sight of who I was, and wondered if I would always feel this way. A lot more negative than usual, worried about my illness and wanting to feel normal again. I had some friends in the UK but nothing like my support network at home. I spent a lot of time on my own in my own head. The Pred also caused mood swings and insomnia which didn't help my worrying.

Happy to say that I've been back in Australia for about 5 months and, once I got settled back in I really felt like me again! Although I've still been flaring over here and still getting my illness under control with short courses of Pred, just being with my family and close friends has changed my outlook so much. Not to mention some bloody sunshine! Haha. I am an extroverted personality so I feel like I "recharge my batteries" when I'm around close friends and family, spending too much time on my own in isolation can get me down.

I guess as time has gone on I've also become more comfortable with the idea of having a chronic illness - it is now just a part of my life and I'll never let it control my thoughts like that first horrible year. I'm still relatively new to Crohn's in the grand scheme of things, but I feel like I've got a much more positive outlook about it now.
 
@Cchicago, I total inderstand what said also, I only be taking
pred for nearly 3 weeks an di have notice different, I can not seem to get into anything prpoerty or stick to programme or acti for long. Lack of sleep and sweating driving mw loop.
 
Prednisone is the good hate drug. Even though it helps with the inflammation it can have some side affects. When your in a flare we just want relief. Hang in there and just take it one day at a time. Good luck
 
So serious question, does anyone get a sense that they have lost who they are on Prednisone?

I feel like since diagnosis, I have struggled with an mild identity crisis that I can't decide is a part of growing older, caused by prednisone, or just a result of dealing with the stress of crohn's in general. The most concerning thing to me is that I feel like over the past year, being on and off prednisone, I have become significantly more irritable and triggered person. I know these are common symptoms of prednisone (which I am currently on for the 3rd time in a year), but I am at a point where I wonder how much of this is actually the prednisone now and will it ever go away or will this attitude become a part of who I am?....I don't want to be an angry irritable person, I was a bit of an irritable/anxious person prior to this diagnosis and medication (I was previously diagnosed with GAD), but this is different.


I love people and have always been a caring/helpful/social/people person with the occasional need to pull myself away from them due being overwhelmed. But I find it is sometimes harder now to be around them and tolerate them. Moreso now I put myself in the social situations that make me feel good, but I sometimes do the bare minimum to interact with others around me and I can tell folks think I am a bit standoffish.

I'm really just hoping that this feeling goes away when I get off of the pred and doesn't become a habit or infused into my personality permanently.

And I hope this made sense to you all. It's something I've been thinking about lately that is starting to bother me internally.
Yeah I totally know what you mean. I got started on pred 8 months ago and have been on it since, over that time I've become a lot less tolerable and a lot less aware of how people feel around me. Me and my (now ex) girlfriend went through a lot of problems with my attitude being differently, and she always got upset when she felt I wasn't who I used to be. I can't say it was just the pred but I still love her, I just wasn't good to be with her, it's taken its toll on me and made me so agitated by small things, made me get angry over things that I shouldn't be and made me not really like who I am at points. - Tie that with the fact I feel crap on it! I honestly can't stand the stuff and want to be off it, wether it puts me in remission or not!
 
I caught up with my best friend today and she could actually tell that I'd finished this course of steroids before I told her! She said she can tell I'm not quite myself when I'm on a high dosage and was glad to see "me" return, she didn't want to offend me by saying that but I'm just touched she knows me so well. So much of this is just my own perception of myself, I forget that my nearest and dearest can tell too and are just as concerned as I am.

Interesting given what we're talking about here!
 

CrohnsChicago

Super Moderator
Thats good news lizzy16 :)

I can't wait to get to that point...I had a major breakdown like no other last night definitely a pred moment. Hopefully in two more months I can be at a place where you are and see myself again.

Wishing you all the best :hug:
 

Artisan105

Yondaime
Thats good news lizzy16 :)

I can't wait to get to that point...I had a major breakdown like no other last night definitely a pred moment. Hopefully in two more months I can be at a place where you are and see myself again.

Wishing you all the best :hug:
Gosh stop being so emotional :] jp. I can't imagine living alone and working towards remission. You have to go to the hospital on your own. Cook and shop on your own. And you have pets. But you didn't go back home. I admire your strength. I hope you feel better too! Ttyl.
 
So serious question, does anyone get a sense that they have lost who they are on Prednisone?

I feel like since diagnosis, I have struggled with an mild identity crisis that I can't decide is a part of growing older, caused by prednisone, or just a result of dealing with the stress of crohn's in general. The most concerning thing to me is that I feel like over the past year, being on and off prednisone, I have become significantly more irritable and triggered person. I know these are common symptoms of prednisone (which I am currently on for the 3rd time in a year), but I am at a point where I wonder how much of this is actually the prednisone now and will it ever go away or will this attitude become a part of who I am?....I don't want to be an angry irritable person, I was a bit of an irritable/anxious person prior to this diagnosis and medication (I was previously diagnosed with GAD), but this is different.


I love people and have always been a caring/helpful/social/people person with the occasional need to pull myself away from them due being overwhelmed. But I find it is sometimes harder now to be around them and tolerate them. Moreso now I put myself in the social situations that make me feel good, but I sometimes do the bare minimum to interact with others around me and I can tell folks think I am a bit standoffish.

I'm really just hoping that this feeling goes away when I get off of the pred and doesn't become a habit or infused into my personality permanently.

And I hope this made sense to you all. It's something I've been thinking about lately that is starting to bother me internally.
I totally feel like that. I am so snippy now and I have to be really careful, especially at work since I work in a school with a special needs child. I have been on prenisone for 5 months straight, every time I get close to being off my maintenance drugs don't appear to be working or I have really bad side effects to them and they up the prednisone again and change my drugs. Besides the massive mood swings, the fact that some mornings my face is is swollen I can't get my contacts in and that sucks cuz the kid I work with tries to break my glasses so I don't like to wear them to work if I can avoid it. It also drives me nuts that the side effect of some of my drugs is tiredness and weakness, but the insomnia of prednisone prevents me from getting enough sleep!
 

CrohnsChicago

Super Moderator
My face puffs up too in the morning! It is the worst!

And I also work for a school district though not directly with any students but it still matters what your attitude is like (and trust me I get tested EVERY day). I'm sure some folks outside of my own department at work have already written me off unfortunately because I don't care/have the tolerance level to small chat or brown nose with them most days.

My friend is a speech pathologist for autistic children so I can imagine what you are going through based on some of the stories she tells me. I hope you find time in the evening to try and unwind. And even moreso I hope you heal and find your way off of pred too sooner rather than later :hug:

I totally feel like that. I am so snippy now and I have to be really careful, especially at work since I work in a school with a special needs child. I have been on prenisone for 5 months straight, every time I get close to being off my maintenance drugs don't appear to be working or I have really bad side effects to them and they up the prednisone again and change my drugs. Besides the massive mood swings, the fact that some mornings my face is is swollen I can't get my contacts in and that sucks cuz the kid I work with tries to break my glasses so I don't like to wear them to work if I can avoid it. It also drives me nuts that the side effect of some of my drugs is tiredness and weakness, but the insomnia of prednisone prevents me from getting enough sleep!
 

Artisan105

Yondaime
During allergy season my eyes get all swollen in the morning too. lol I look like a frog. :[ Please pass the benedryal please lol
 
During allergy season my eyes get all swollen in the morning too. lol I look like a frog. :[ Please pass the benedryal please lol
For me allergy season means that now no place is safe! The only good ing about winter is that I'm not allergic to it. :ylol: Besides the daily 24 hour allergy meds I always have bendedryl on hand! My parents joke that I should live in a bubble because of all my allergies. I think that might be problematic with the Crohn's issues too! But otherwise the bubble idea does have some merit.
 

CrohnsChicago

Super Moderator
I actually managed to AVOID allergies for the first time in my life last year because I was on a high dosage of pred both during the spring and fall. This time around however Im starting to finish up my pred so i think the allergies are peeking through.

My eyes get so puffy when I wake up sometimes it looks like I just got out of a boxing match :p . I purposely get up a bit earlier to move about and try to let it all die down a bit. The only thing that seems to work for my allergies is singulair and zyrtec.
 
I actually managed to AVOID allergies for the first time in my life last year because I was on a high dosage of pred both during the spring and fall. This time around however Im starting to finish up my pred so i think the allergies are peeking through.

My eyes get so puffy when I wake up sometimes it looks like I just got out of a boxing match :p . I purposely get up a bit earlier to move about and try to let it all die down a bit. The only thing that seems to work for my allergies is singulair and zyrtec.
You might laugh but get one of those ice pack mask things and put that on when you first wake up, it will help bring the swelling down. The advantage to the mask being that its forms to the face better than a normal ice pack and it has eye hole and wraps around your head so you can go about your day while dealing with your swelling.
 

Artisan105

Yondaime
You might laugh but get one of those ice pack mask things and put that on when you first wake up, it will help bring the swelling down. The advantage to the mask being that its forms to the face better than a normal ice pack and it has eye hole and wraps around your head so you can go about your day while dealing with your swelling.
lol i laughed :] jp it was a good idea. I will try it next time.
 
The dose can be split up. I've heard it mentioned that this can help with reducing side effects (dunno how true that is, or what side effects that works for) and may help you taper with fewer issues (again, not sure how true that is either). I took it once a day at night with the rest of my medication (anytime my doses get split up I forget to take it at some point, I'm only trained for night time meds :p).
I used to put the container in my breakfast bowl on the kitchen bench before I went to bed at night so that I wouldn't forget. :ylol:
 
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