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Frustrations with Crohns/ Prednisone

S

Skippy

Hi there,

After many sleepless nights (due to the prednisone), my boyfriend encouraged me to try the forum to talk to other people like me who have Crohn's Disease.

I'm not sure where to start, so I guess I will start from the "beginning" (wherever that may be).

I'm a 21 year old college student and was diagnosed with Crohn's disease officially in Decemeber of 2007. However, in October of 2007, I spent two weeks in the hospital experiencing severe abdominal pains and vomiting which started the whole fiasco. Over the course of the next nine months, I have been on Pentasa, prednisone, and humira (which is absolutely wonderful).

I was just wondering if there is anyone else who has been on or is on prednisone that experiences severe mood swings, frustrations, you don't feel like yourself at all, and the inability to sleep? Any suggestions for getting my brain back?

Sometimes at night, it's almost like I can not shut my brain "off," and I continually think.

Thank you for your suggestions!
 
Last edited by a moderator:
A

A[I]R

Guest
Skippy said:
I was just wondering if there is anyone else who has been on or is on prednisone that experiences severe mood swings, frustrations, you don't feel like yourself at all, and the inability to sleep? Any suggestions for getting my brain back?
Click to expand...
Hi Skippy,

Everyone has different side effects for different medication but don't feel alone, when I use to take Prednisone I used to get really angry and frustrated quickly. I also used to sweat severely. The side effects of Prednisone are terrible but it is a fantastic drug.

It may also be of some interest to you that the founder of Prednisone committed suicide after he created Prednisone when he found out about all the side effects it caused. But I think at the same time he didn't think about how many people it has helped and cured.

Hope this helps,

P.S. Crohn's Sucks I have had it for 11 years. I reckon, surgery is the only way to go for now.
 
S

Skippy

Well that's fantastic to hear about the creator of prednisone committing suicide. And yet I understand. I get really sweaty too actually. I've found that as long as I stay busy (bike 15 miles a day, rollerblade, play tennis, anything) it helps me get some peace of mind.
 
soupdragon69

soupdragon69

ele mental leprechaun
Hi Skippy,

I was diagnosed Dec 2006 and am also asthmatic (for the last 10+yrs) so have had more than my fair share of steroids.

The feeling of being awake at night unable to sleep yet constantly exhausted is one that is hard to describe to someone who never experienced it. My friends always threaten to leave their washing out for me to do as I will keep myself busy and sneak about doing things at a slow pace. If I still cant sleep I will go to an all night supermarket for a walk around (its hilarious when you see how many other insomniacs there are for whatever reason).

As you can see I tend to try and look at the funny side. However it can have the other effect and I end up a jibbering wreck crying my eyes out. My GP now wont give me more than 40mg (60mg leaves me inconsolable and depressed on top of insomnia and exhaustion). He also monitiors me every few days to see how I am and helps me to decrease it a fast as possible.

Just thought you might like to know you are definately not alone on this one.

Thinking of you . Hang in there. Things will get better. ((hugs))
 
E

ErinDF

Hi...

When I was first diagnosed I was on high dose Prednisone for quite a while. Trust me, what you are going through is completely normal. Admittedly, I was 13, so I was probably a little crazy anyway, but I was completely manic. High highs (so hyper sometimes I couldn't sit still) followed by low lows (breaking down in tears because two activities conflicted or because of nothing). My mother, who is a social worker, said it was exactly like living with one of her patients.

Unfortunately, I wish I could tell you I had a solution, but the only thing that helped was getting off the Prednisone (I'm now on Remicaide and I basically will never use it long term again...only short bursts). But I only recently found this site also, and I know its made me feel better to know that at least I'm normal.

Hope this helps.
 
O

Op.28/18

Guest
A[I]R said:
It may also be of some interest to you that the founder of Prednisone committed suicide after he created Prednisone when he found out about all the side effects it caused. But I think at the same time he didn't think about how many people it has helped and cured.
Click to expand...
I googled to try to find a source for that. All I could find is that the inventor of pred died in 2004; no cause of death was given. Is it really true that he committed suicide?

I wish doctors who so casually dispense pred were as caring of people as the inventor. Many of pred's terrible side effects can be treated and you can prevent them from becoming permanent. If you have a good doctor, I don't think it's a terrible drug. If, however, you have a doctor who doesn't care or is just incompetent, the drug could really ruin your life, as it did mine.

My doctors told me pred was safe and not to worry about side effects; when side effects occurred, they denied them; when I asked what to do, they refused to do anything; when, as a result, the side effects became permanent, they didn't care.
 
S

Skippy

Yay! That makes me feel better! I've gotten really good at playing chess online all hours of the night. I've also gotten a lot of reading done. I totally can agree with the crying for no apparent reason and the feeling that something is so terrible it will end the world. The frustrating part is that sometimes I can't even figure out why I am super hyper and happy and energetic and then all of a sudden I just want to be alone and cry. Oh prednisone, I guess it is a love hate relationship.
 
S

Skippy

I'm not certain actually if the creator did commit suicide. From the side effects. . . . it wouldn't be a suprise.
 
P

Promise77

Guest
Skippy - I refuse to take prednisone anymore...my doctor loves my bullheadedness. The side effects are terrible! I guess if my life was on the line and all that was there to save me was prednisone...I would give up and take them. The night sweats, blisters on my face and arms, incredible weight gain with an enormous face, joint pain and mood swings that could drive anyone mad...its just not worth it. I suffer through the pains (they arent nearly as bad now as they were 12 years ago - but still hurt) and pray that things are not just falling apart inside of me. Probably not the healthiest thing to do...but it is working for now.

You'll be ok....keep your head above the puddles of tears...it'll get better I promise! =)
 
S

Skippy

Thank you Promise77,

I'm trying to stay positive about all of this. It is frustrating experiencing all of these changes within your body in such a short period of time. I only have until October 14, and then I am completely off of the prednisone. So at least I can count down the days.
 
Mazen

Mazen

Here are some things to take care of when you are taking Pred (I got them from my own reasearch not the docs):

- Eat a high protein, high Calcium, low salt, low sugar diet
- Take Calcium supplements with Vit D (preferably Calcium Citrate)
- Take a multivitamin
- Check your blood sugar levels
- Have some excercise
- Drink lots of water

Hope this helps.
 
S

Skippy

Thank you Mazen,

I've taken on a healthier lifestyle since being diagnosed with Crohn's. So far, I don't drink soda, coffee, no fried foods, excerise daily, and drink plenty of water as well. I've noticed that this does help a lot. I do take a multi-vitamin as well as calcium, and try to steer clear of high sugar or high salt foods. As far as the calcium, most calcium comes in the form of calcium carbonate, why do you suggest calcium citrate?
 
G

Gemma

Guest
when i took steriods itwas like id have a personality transplant and i became really horrible. Cant really remember anything else about them as it was so long ago and the consultants dont give them to me anymore. The only other thing i remember is putting on loads of weight.
 
S

Skippy

Yes, sometimes I totally feel like a different person; and I can't even rationalize or explain why I am the way I am at times. It is so frustrating, and all I want to do is cry. Hopefully things get better soon.
 
S

Skippy

Hi Pen,

I do take calcium everyday as well as drink a lot of water. I was wondering if anyone can share their experiences with prednisone regarding weight gain and if the weight/ bloating goes away once you are off of the prednisone? I've been on prednisone for about four months now, and have gained a much needed twenty five pounds. Before, I was 5'7'' and about 120 pounds; now I am about 145 lbs and look much healthier. Although the weight is ideal for my height, I am often frustrated because of how fast my body is changing and how my clothes don't fit as well as they used to. Does the weight slowly go away once you are off of prednisone?
 
S

skinzdogg

Guest
Prednisone

Skippy said:
Hi there,

After many sleepless nights (due to the prednisone), my boyfriend encouraged me to try the forum to talk to other people like me who have Crohn's Disease.

I'm not sure where to start, so I guess I will start from the "beginning" (wherever that may be).

I'm a 21 year old college student and was diagnosed with Crohn's disease officially in Decemeber of 2007. However, in October of 2007, I spent two weeks in the hospital experiencing severe abdominal pains and vomiting which started the whole fiasco. Over the course of the next nine months, I have been on Pentasa, prednisone, and humira (which is absolutely wonderful).

I was just wondering if there is anyone else who has been on or is on prednisone that experiences severe mood swings, frustrations, you don't feel like yourself at all, and the inability to sleep? Any suggestions for getting my brain back?

Sometimes at night, it's almost like I can not shut my brain "off," and I continually think.

Thank you for your suggestions!
Click to expand...
Hey i'm Steve. 24. Crohn's for 7 years now. Currently im on prednisone for the 7th or 8th time and it is affecting me worse than ever before. As you can see its 6:22 am and im still up from the night before. I dont usually sleep until around 9 if im lucky. I feel like i have completely lost my mind and the thoughts couldnt race any faster. I really feel insane sometimes. Its so bad that it has almost completely shattered my relationship with my girl of 2 years. All I do is think about stuff and anaylize which almost always ends in me being in tears. I feel like I am 100% not myself and I try so hard but get stuck. Right now I have a small bowel obstruction that put me in the hospital for 8 days in Sept of 06 but is now back full force. Def gonna need surgery which should take place in a month or so. I've been on full liquid diet for 3 months now which is a mind f$%k all in its own. Also on Pentasa, Entocort, Cipro, Protonix, Percocet, etc. Sorry for the ramble but I feel a little better knowing i'm not the only one with no sleep and a crazy racing mind. My doc has almost begged me to try Humira but i'm terrified of the possible side effects. What are the specific benefits you've gotten from it?:ybatty:
 
F

fenway1971

Sports Crohnie
Hi Skippy - looks like place to post about Prednisone.

I'm experience major flare - never used steroids - but doc today says unless I see improvement by end of month, he's putting me on a 30-day Prednisone treatman program.

I do not want to do it and am hoping to avoid it through aggressive diet management and colazal.

I agree with you that diet plays important role. I generally eat healthy but had started adding caffeine and sodas back in my diet which was dumb in hindsight. Exercise is also good - you might want to try a weight training program which will help build muscle. I put on 15lbs (145 to 160) on a 5'9 frame and decreased body fat and lowered cholesterol 30 points from 195 to 165 with no change in diet (already been on good diet thanks to crohns).

I don't take calcium supplements. What do you take?
 
Agent X20

Agent X20

Location
West Yorkshire, UK
I didn't read this thread at first because I haven't been on prednisone for about 35 years, but it makes interesting reading. All I remember about it was the contrast with being ill just before... I'd nearly starved to death (I was 6'2" and weighed 8 and a half stone... that'd be about 120lbs)... suddenly I was eating like a horse, getting about 3 hours sleep a night, and felt like superman. I also seem to remember getting totally crippling bouts of indigestion.
Curiously, around the same time, I started to get a lot of pain in my left hip. Since then I had arthritis in that hip and had to have a hip replacement two years ago, I was comparatively young for such a procedure (50) and a number of specialists have never been able to come up with a convincing reason for developing arthritis. I always mentioned the steroids, but no-one seemed to make a link.
 
drew_wymore

drew_wymore

I'm not adding much to the discussion but I hate Prednisone with a passion. I refuse to take that stuff again unless there is a life threatening situation that requires it.
 
S

skinzdogg

Guest
Done!

Pen said:
Yeah I hear ya Drew, just finished my last pill Friday yeehaw. I have been on it on and off, this time is the last. My doctor didnt recommend it, it was my choice, because I know it works in high does, but he worries about the sides creating more havoc. I have a great GI, he is one of the good ones,,, thank God after having 4.
Click to expand...
Good for you Pen. Same here. I wish I could say I was done. I started 40 mg's on Friday and droppin 10 a week no matter what. I have completely lost my mind this time!:ybatty: Everything is falling apart around me and i'm not myself at all.:depressed: I cannot get over how bad the mental side effects are hitting me. I'm gonna shoot for the Humira and if nothing please cut me open and remove My Hell(small bowel obstruction). I too have found a great GI. My third.
 
S

skinzdogg

Guest
thx

Pen said:
Hey skinz, the sides of prednisone is so erratic that it makes you feel like you are in fast drive and hyper and very moody. Tapering down fast (like I did 5mg a week or a pill a week) made me feel tired and nutso. Dont go too fast. I was touchy and had to do alot of apologizing, so be prepared to say I am sorry...alot. If you dont, you will lose a few people around you and they dont understand what you are going through. Heck even I didnt know which end was up. Just make sure you take extra calcium. I know you are young but you could pay down the road. Good luck with the Pred!
Click to expand...
Yeah I def owe my girl something special for putting up with me. Maybe i'll do 5 a week. I've tried to take calcium and it kills my stomach no matter what. I think i'll try eating tums since those are calcium. Thanks for the advice.
 
M

mommy1st

I have to agree with everyone I hate prednisone. I probably should be taking it right now but the last time I took it I snapped at my son (who's only 3) for no reason. I felt awful I couldn't believe that I did it. He was really good about it though. He just said geez mommy needs a nap. but I still couldn't forgive myself. He did get a few new transformers out of it though.
 
S

skinzdogg

Guest
This is extremely embarrasing and I can't believe i'm gonna say it but my biggest f**kin issue with the Prednisone is I CANNOT, I mean really, CANNOT stop f**king crying! Its crazy! Out of no where BAM TEARS and i'm constantly feeling like i'm being annoying or i'm not wanted. I'M SO F**KED UP FROM THIS SHIT! I feel worthless. Sorry for the cursing. I had to do it since i'm talking about crying(makes me feel more masculine). HA.
 
S

sammie

Guest
i've recently been diagnosed

hi to anyone that will spare the time to talk.
im 18 and found out last week after almost a year of all the painful symptoms that i have crohn's disease. at the moment i just feel very low....is it normal to feel like this?
and also the pre....something steroids that they have given me are making me want to eat all the time and i feel bloated. is anyone else feeling the same or is it just me?
 
teeny5

teeny5

sammie said:
hi to anyone that will spare the time to talk.
im 18 and found out last week after almost a year of all the painful symptoms that i have crohn's disease. at the moment i just feel very low....is it normal to feel like this?
Click to expand...
I have up and down days. Sometimes I am really positive about it all and I feel like I can handle it. Other days I am questioning if I need to quit working and if I will ever feel better. Those are the days I get really angry and bitter about it. In the beginning I was depressed and took me a while to get a grip on the whole thing. It is so hard to learn you have a chronic disease when you are so young. I just kept thinking that I would be sick longer than I have already been alive (I am 28). Thinking is this what the rest of my life is going to be like....

Don't worry it does get better. My good times are quite as long as other people's...maybe 2 weeks if I'm lucky. Hopefully you will go into remission and feel a lot better soon. Just get the support you need from friends, family or this forum. It helps to talk with others who truly understand what you are going through.
 
M

mommy1st

sammie said:
hi to anyone that will spare the time to talk.
im 18 and found out last week after almost a year of all the painful symptoms that i have crohn's disease. at the moment i just feel very low....is it normal to feel like this?
and also the pre....something steroids that they have given me are making me want to eat all the time and i feel bloated. is anyone else feeling the same or is it just me?
Click to expand...
Hi Sammie, yes it is very normal to feel low and even depressed but don't worry soon will come acceptance, that's the hardest part. You don't have to worry because here is a forum that will answer your questions and give you advice. They will help you through tough times. I wish there was something like this when I was first diagnosed, but that was 19 years ago and not much was known about it back then. Yes prednisone makes you want to eat all the time but as they have you cut back on it it will get better. Also having positive people around you who also understand your disease is a big help, I think a positive support system is what keeps you going. Good Luck and feel free to ask anything because I guarantee someone here has an answer for you.
 
S

Skippy

I hear you on the crying part! Sometimes I just start crying and get so frustrated for no reason at all. Hang in there, it will get better. I think tapering 10mg a week is pretty extreme. Ask your doctor about 5mg? I had problems tapering 5mg a week and had to cut back to 5mg every two weeks. Hang in there!

KIM
 
theability

theability

Skippy,

Hey you know that becuase the the WILD and CRAZY prednisone issues I demeanded to me switched to Solu-medrol dose packs instead at home and didn't have as much of issues that the prednisone cuases. Now I am actually on budesonisde (entocort) and don't have any issues really with that at all. I just started the steriod, we'll see how it goes....
 
I

Isla

Guest
That is what makes Crohns so unique. Some medications work for somebut not for all. I am one of the lucky few that Asacol actually helps somewhat, but usually first lines don't work for a lot.
 
F

Fed up with modern meds

Guest
A[I]R said:
Hi Skippy,

Everyone has different side effects for different medication but don't feel alone, when I use to take Prednisone I used to get really angry and frustrated quickly. I also used to sweat severely. The side effects of Prednisone are terrible but it is a fantastic drug.

It may also be of some interest to you that the founder of Prednisone committed suicide after he created Prednisone when he found out about all the side effects it caused. But I think at the same time he didn't think about how many people it has helped and cured.

Hope this helps,

P.S. Crohn's Sucks I have had it for 11 years. I reckon, surgery is the only way to go for now.
Click to expand...
Same here, I can't take Prednisone. I get not just angry, but psychotic. I attempted suicide once when I was on prednisone. It's just another drug that delays the effects and does nothing to treat the disease, not to mention it causes kidney problems and in some cases, prednisone-induced psychosis.
 
S

skinzdogg

Guest
I'm down to 5mg a day.... WOOHOO. Still got 25 pounds 2 lose though. Just my man- boobs and face. HAHAHAHA i'm Prednisone crazy. Seriously though almost lost my chick of 2 years cuz of this shit. Humira here I come
 
ladyB

ladyB

Humira worked great for a few months then seemed to peter out for me. Hope your results with it are better skinz
 
S

Sparky

I was on pred for a long time, best part of a year. Started off on 60mg, and gradually reduced it. It took a while as my CD was steroid dependent, and everytime I dropped the dose below 30mg I flared again.

The last time I took it, I had a psychotic episode, so never again. These days I take entocort as needed, and while they're nothing like as effective as pred, they do the trick eventually.
 
C

Chondine

I really want to warn people out there who is taking prednisone or is going to take prednisone.

Its a drug of evil.

I lost my mom this morning because of that. She was diagnosed with PMR that was affecting her since the beginning of the year but the family doctor didn't know what caused it not until recently she was refereed to a specialist and determined she had PMR and prescribed prednisone to her.

She started taking it very recently and one time she was calling the police saying that Dad wanted to kill her. She then insisted she wanted to go to live with her sister. She stayed there only for a night and the second night, she shot herself.

So why on earth would any doctor prescribe something like that? No wonder the inventor killed himself. Who should be responsible for her life?
 
tiloah

tiloah

Chondine said:
I really want to warn people out there who is taking prednisone or is going to take prednisone.

Its a drug of evil.

I lost my mom this morning because of that. She was diagnosed with PMR that was affecting her since the beginning of the year but the family doctor didn't know what caused it not until recently she was refereed to a specialist and determined she had PMR and prescribed prednisone to her.

She started taking it very recently and one time she was calling the police saying that Dad wanted to kill her. She then insisted she wanted to go to live with her sister. She stayed there only for a night and the second night, she shot herself.

So why on earth would any doctor prescribe something like that? No wonder the inventor killed himself. Who should be responsible for her life?
Click to expand...
First of all I am so sorry for your loss. Whenever we put anything into our bodies it changes the chemistry and can have profound effects. It is absolutely tragic that it was not determined what was happening to stop it in time. Again I am so sorry. I can only imagine how painful that is.

That said, this is a forum for people who suffer from a condition called IBD. The complications of these diseases can be life threatening. In many cases Prednisone is the only option to get an acute flare under control, and for some staying on Prednisone is the only course of treatment they can work with. It's certainly not ideal, but it's better than letting our conditions run out of control.

Some of our members have experienced mental effects that have led to discontinuation, but the majority don't. Some choose to take anti-anxiety or antidepressant medications at the same time. It is a good drug when it is used in an appropriate candidate for an appropriate condition.
 
S

Staceyscarlete

I read your post and I wasn't surprise at the number of responses. Both my husband and I have been on pred. I remember finding him wide awake at 3am watching tv or online. And now that is my life. It gives you lots of energy which is awesome unless your on a counter active drug as well that drains you and then when your like thank goodness hopefully I'll sleep but no the second wind come on at 12am and your brain just can't stop thinking. My cheeks are all puffy and I'm jittery all the time. And when you taper your so sad and you don't know why. I hate pred but its been a savious aswell so its like a bad marriage. I'm just waiting to finally be done with it and the only thing I can say is a few bad months on pred is worth feeling normal for dbl the time afterward. Though take your calcium it deatroys your joint and bones.
 
N

northerngurl

Skippy said:
Hi there,

After many sleepless nights (due to the prednisone), my boyfriend encouraged me to try the forum to talk to other people like me who have Crohn's Disease.

I'm not sure where to start, so I guess I will start from the "beginning" (wherever that may be).

I'm a 21 year old college student and was diagnosed with Crohn's disease officially in Decemeber of 2007. However, in October of 2007, I spent two weeks in the hospital experiencing severe abdominal pains and vomiting which started the whole fiasco. Over the course of the next nine months, I have been on Pentasa, prednisone, and humira (which is absolutely wonderful).

I was just wondering if there is anyone else who has been on or is on prednisone that experiences severe mood swings, frustrations, you don't feel like yourself at all, and the inability to sleep? Any suggestions for getting my brain back?

Sometimes at night, it's almost like I can not shut my brain "off," and I continually think.

Thank you for your suggestions!
Click to expand...


I'm just a little curious why you are still on the Pred when you are taking Humira. If it is doing it's job you should be off the pred. I tried Humira and it didn't work, I couldn't ween off. Then I tried Remicade and it worked, I got off pred and then started having side effects and had to get off it. I just had my large colon and ileum removed after almost dying because of all the pred,immuran, all the drugs! I had no veins, crazy crappy vitals and when they tried to take out my colon it fell apart like wet kleenex. I wish my gastro wouldn't have fought me so long on the bag. My recovery wouldn't be taking so long and my suffering wouldn't have been so bad. The bag is my saviour, I'd kiss it but is stinks! LOL :)
 
tiloah

tiloah

Keep in mind the original post on this thread is about three years old! I'm not sure if Skippy is still around on the forum.

Also I looked for any information about the "inventor" of Prednisone killing himself and could not find anything, which leads me to believe it's not true. He died at the age of 84, in any case.
 
C

chelseyhearsum

hiya i also have these side affects i can be awake for hours on end at night and i seem to be having nightmares alot and also waking up at 7 or 8 and i used to love my lay ins do u no anything that reduce these side affects? that would be wonderful for a decent nights kip
thanks
take care
chelsey x
 
A

AdamJC

Just to chip in - just started taking pred and 5 days in I'm getting terrible insomnia. I can get off to sleep eventually but the slightest thing will stir me in the night then I'm awake til morning! I wonder if there are any over the counter medication to help with sleeping that won't stop me waking up when I have work!
 
P

pielady72

I'm starting prednisone at 40 mg and will be on it for the next 8 weeks for a chron's flare. I have been on prednisone before for joint pain but wasn't on it for a long time. I also take vit D 2000 IU daily and I know that I have to start a good calcium supplement but my question is would a good B complex vitamin help combat the moodiness people feel while taking prednisone?
 
B

BBACK12

Location
Ohio
I hate Pred. I experienced mood swings, fevers, chills, and I would wake up constantly all night long! I HATE HATE HATE that drug!
 
A

AdamJC

Pielady, I'm afraid I dont think there's a lot to help with the mood swings - theyre just part of pred!

I find that just knowing pred can cause mood swings is enough to snap me out of them :) positive mental attitude has kept me from biting my other half's head off before now. :p

And I promise you although pred can seem like the worst drug ever at times, it DOES have very strong positive effects for an awful lot of people - myself included.

I have the acne(face, neck, shoulders back), sweating itching etc, insomnia but I'd still rather take it knowing it's doing a damn good job of keeping my crohns at bay until my other Meds kick in :) x
 
J

Jasoncode3

Skippy' keep up the exercise to burn off the energy, if you really can't sleep try Xanax low dose. It counterbalanced the pred pretty well, or.....get a nighttime job. Jk lol
 
scotishcanadian

scotishcanadian

Skippy, let me tell you from my end, Prednisone is Hell with its side effects whenever you have to be on it long term. My lovely side effects from being on it for over a year:

-Zero former facial structure [chipmunk cheeks x 546372354]
-Massive, monster like cravings for food that come at random moments
-Insane amounts of stretch marks [if you can imagine, I have a stretch mark there, that's all I'm gonna say]
-Mood swings galore [bless my family for putting up with them]
-Bloating like you wouldn't believe
-Puffy abdomen [I work in retail and 4 customers within the last month have asked when I was due. I'm not pregnant or overweight.]
-Joint pain [Imagine your back being made of aluminum and then crunching it up. That's what my back feels like at night.]
-The famous 'camel hump.' [Don't know what I mean? Google it. Seriously.]
-Acne
-Water retention everywhere [in my legs even!]
-Hair loss

...and those are just the ones I'm cognizant of. I'm currently tapering off from 40 mg. I'm not on 25 mg which, for me, is huge. Worse yet, the prednisone doesn't seem to do much anymore for my crohns. :\ But when it did work, it helped keep me healthy when I needed it [minus the crappy side effects]. Best of luck with it. It's definitely a necessary evil in some cases.
 
L

luvincookie2001

Prednisone is the best and worst drug ever.. lol.
I was diagnosed in my first year of college been on prednisone many times for many different reasons.
It always makes me worse before it makes me better. But usually I get really fast beating heart during sleep, restlessness, abundance of energy, moon face (oh joy), darker hair growth, night sweats.... but it works.
I've also tried entocort because of my horrible initial reaction to it and it did nothing for me..
I'm also on Humira now, working wonders for my chrohns but now developed a horrible scalp flaking issue and psoriasis like rash over my entire body aside from my face for the last 4 months.. seeing dermatologist soon though!
 
Johnnysmom

Johnnysmom

The only suggestion I have is to take your entire dose in the morning. My son had insomnia as well and I always wondered if he could take tylenol pm or something to help him sleep. We just ended up waiting it out until he was off but has anyone been given anything to help them sleep by their G.I.?

I think if he could have just shut his brain off at night and gotten some sleep he would have been able to deal with things better during the day. My heart broke for him watching him on that stuff. :(
 
Edgey

Edgey

Location
Wolverhampton
Hey,

im new to the forums which seem to be looking like the best i've seen on the web yet :).

I'm 18 and currently on prednisone after recovering from a flare up and never gave things much though towards side affects of tablets and always presumed it was myself, i dont have half the issues you guys have with these tablets but i noticed since being on prednisone that i find it really hard to remember things and i'm less social and bubbly as i used to be before...... I've lost the touch with things thats how it feels and it really gets me down sometimes and i feel im going slightly mental, so after reading all this I'm now worried :(
 
Z

zeesoo

Edgey said:
Hey,

im new to the forums which seem to be looking like the best i've seen on the web yet :).

I'm 18 and currently on prednisone after recovering from a flare up and never gave things much though towards side affects of tablets and always presumed it was myself, i dont have half the issues you guys have with these tablets but i noticed since being on prednisone that i find it really hard to remember things and i'm less social and bubbly as i used to be before...... I've lost the touch with things thats how it feels and it really gets me down sometimes and i feel im going slightly mental, so after reading all this I'm now worried :(
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If you sit thinking of these side effects you will feel it
don't think about it try to live like you are normal even if you felt one of these side effects , just ignore it
because you won't take this drug for the rest of your life it is just a period and you will stop it
 
tiloah

tiloah

Hey Edgey, welcome to the forum. The good news about Pred is that when you go off, usually the side effects go away. But I think feeling depressed and not like yourself or as social are signs that need to be addressed with your doctor. He may be able to find something that can help. It might be something you can power through, but it might not. Prednisone can have serious mental health effects so I want to make sure you have your bases covered.

I hope the rest of your Prednisone course goes smoothly and the treatment for your flare is effective for you.
 
Edgey

Edgey

Location
Wolverhampton
diesanduhr said:
Hey Edgey, welcome to the forum. The good news about Pred is that when you go off, usually the side effects go away. But I think feeling depressed and not like yourself or as social are signs that need to be addressed with your doctor. He may be able to find something that can help. It might be something you can power through, but it might not. Prednisone can have serious mental health effects so I want to make sure you have your bases covered.

I hope the rest of your Prednisone course goes smoothly and the treatment for your flare is effective for you.
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thanks diesanduhr,

I've never told my doctor about these side effects as i stay home quite a lot these days so i always presumed that were the reason for it.

The side effects do go away after i have finished my course of Pred though right?
 
tiloah

tiloah

The side effects should dissipate when you are done tapering and eventually go away completely. It's different for everyone.

You could give your doctor a call if you don't want to go in. If the side effects aren't too bothersome it's your choice. But you do have options if you want do something.
 
A

akpatti

It is the higher dose of pred that messes with me. I have been on 60 mg of pred for about a year...finally considered a failure at it this go round so had surgery.Will say that any time I tapered it helped with the emotional aspect. 60 mg left me wanting to cry over the stupidest things and just feeling hopeless at times...it didn't last all day or for weeks at a time, so they weren't concerned about depression. Felt bad for my husband though it was like a permanent case of pms:( I would even get so upset with myself when training that I would want to give up...not typical for me. The energy was amazing though. I think that was the only reason I could drag my butt out of bed in the morning to work and get things done. Anytime I decreased I would start having pain, lose appetite, but become more sane. It is a wonderful and horrible drug at the same time. If you can find a happy medium with the dosage while you get the flare under control I think it would make a huge difference. I am sorry that you have to use it, but this is is the first time I have not responded to treatment with it and I have been on it off and on for 12 years, so it can absolutely work. Hang in there and hopefully they will get your straightened out.
 
natatak227

natatak227

Skippy-
Frustration is a huge side effect of the prednisone. My co-workers actually call it "roid rage" when I snap at them so quickly. It is almost as if I want to wear a t-shirt around that says, "I'm usually not this fat, I'm usually not this bitchy, I'm just on prednisone." It would be so much easier to explain!

Have you tried relaxation before bedtime? When I worked at NIH, I found that many patients benefited from relaxation techniques before trying to take a nap or sleep.
 
meganmila

meganmila

I have had the same exact symptoms while on prednisone. I remember being really irritated at everything and having short fuses. Not sleeping is horrible. I asked to get on pills it was that bad. I don't like being on it..it's hell. I don't have any advice just chiming in as I felt the same way.
 
H

hangingon

i am also having a lot of trouble sleeping now that i am on pred again. also, i've noticed that i get really upset/confused when i have to make decisions. i cried the other day because i didn't know what kind of sandwich i wanted my husband to bring me for lunch... i am on 30mg/day right now and we are going to try tapering starting monday. i hope my dr is willing to let me go slowly because i do not taper well. i wish this drug wasn't such a jerk because it really is effective... hang in there and know you aren't alone...
 
SnowDay

SnowDay

Location
Ireland
I was on it recently for the first time. The one and only day I took it, that night I tried to go to sleep at 10pm, 12 hours later I had only slept for 4 of those hours. The rest of the time I was awake with the itch all over my body, and the pain in my legs (felt like I had 2 dead legs all night).

Also I felt really weird in my mind. I couldn't stop thinking negative and depressing thoughts and I felt so wired and uncomfortable for the whole night. Anything that messes with ones body and brain chemicals as much as it did, I feel just can't be good.
 
N

NoNameNoFace

soupdragon69 said:
The feeling of being awake at night unable to sleep yet constantly exhausted is one that is hard to describe to someone who never experienced it. )
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Thank you! you just hit the nail on the head, no matter how long I sleep I still wake up feeling more tired and fustrated, then when I doze over I wake up even more fustrated with the exhaustion.

No doubt Pred was a brill for me, I felt amazing for weeks on it until I reduced my dose and my sypmtons came raging back. Although it left me waking up at night with anxiety and worrying about things!
 
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