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04-03-2013, 08:04 PM   #61
jackwhiting
 
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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!
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04-03-2013, 08:06 PM   #62
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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.
04-03-2013, 09:23 PM   #63
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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).
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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.
04-04-2013, 07:09 PM   #64
mwkwmn
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I had to wean down 1/2 mg a month when I got below 10
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Blood clots 2006
Low testosterone 2006
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Lortab
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04-05-2013, 09:44 AM   #65
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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
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Diagnosis: Unclassified October 2012 - Crohn's confirmed February 2013 - Returned to unclassified in May 2013
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Now: Stress related symptoms only since last flare-up in Feb. 2013
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Previous Meds: Mezavant (Mesallazine) and azathioprine (stopped due to abnormal LFTs)
Number of flare-ups: Seven
No flare-ups since July 2013
04-05-2013, 09:57 AM   #66
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I just replied to your thread.

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 ). 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.

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04-05-2013, 10:15 AM   #67
Artisan105
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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
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04-05-2013, 10:18 AM   #68
Artisan105
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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.
04-05-2013, 10:19 AM   #69
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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!
04-05-2013, 10:23 AM   #70
Artisan105
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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.
04-05-2013, 10:24 AM   #71
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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.
04-05-2013, 10:28 AM   #72
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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!
04-05-2013, 10:29 AM   #73
Artisan105
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Here is some feel good music from Micheal Buble- called Everything.
http://youtu.be/sJohiKFk0yc

It will make you feel better :] Sing it in the shower, in the car, or after a bad flare. Dr. Steven recommends it. lol
04-05-2013, 10:32 AM   #74
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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.
04-05-2013, 10:52 AM   #75
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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.
04-05-2013, 11:01 AM   #76
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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.
04-05-2013, 12:11 PM   #77
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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!
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04-05-2013, 12:17 PM   #78
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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..."
04-05-2013, 03:35 PM   #79
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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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Last edited by Josephine; 04-05-2013 at 04:15 PM.
04-05-2013, 07:13 PM   #80
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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.
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04-05-2013, 07:21 PM   #81
Artisan105
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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.
04-05-2013, 11:10 PM   #82
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@ 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.
04-06-2013, 05:18 AM   #83
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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).

Last edited by UnXmas; 04-06-2013 at 07:11 AM.
04-06-2013, 06:45 AM   #84
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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.
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04-06-2013, 01:12 PM   #85
Josephine
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@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.
04-06-2013, 07:52 PM   #86
mwkwmn
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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
04-06-2013, 07:57 PM   #87
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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!
04-07-2013, 02:56 AM   #88
lizzy16
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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!
04-08-2013, 10:27 AM   #89
CrohnsChicago
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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
04-08-2013, 12:13 PM   #90
Artisan105
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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
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.
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