Why is everybody scared of Prednisone

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moogie

moogie

Joined
Jan 24, 2011
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I'm new and all, and I've been reading you guys since yesterday. One thing comes back over and over.

Fear of Prednisone.

I've taken prednisone when I was a kid and now I have started again 20 years later. I'm using 40 mg a day and I am on my 5th day of my 10 day strech before I start back down to 7.

I've looked up the med on wiki and things like that and there does not seem to be any really bad effects. Nothing really good mind you but nothing bad either. Now I'm starting to worry.

What do I not know about pred? Can somebody tell em why most people seems terrified of it?

Thank you
 
Personally, I'm not exactly scared of it. I just don't like the psychological side effects it gives me. I already have a history of depression, but being on high doses of Pred for 6 months gave me really violent mood swings, insomnia, manic episodes and of course a lovely fat face!
I probably would use it again, if I had to, because it did make me feel better almost immediately. However, I wouldn't look forward to the side effects.
 
I never read anywhere that it can effect a person mentaly.

Does it take a while for that effect to kick in or does it do it right at the start?

I mean I feel down these last few days I thought it was because of the pain and a bit of self pity... is it the meds doing it to me or is it to soon? Using pred for only 5 days.
 
Well, I felt fab on it! I was euphoric, happy and energised on it.
I'm not scared of it at all, it saved my life, I'm glad to be off it tho, cos nowt fits me!
The side effects are a small price to pay to be healed.
I wouldn't hesitate to go back on it if it meant my life depended on it again.
What I didn't know at the beginning was, it's a bone robber so additional calcium is needed as a supplement.
I also think it's not ideal to take long term.
 
It reacts with people differently. Not everyone gets the mental side effect. When it comes to the head messing stuff, I only get the mood swings when I'm on high doses. At my maintaining dose it's really just the annoying physical side effects.
 
I'm one of those who didn't have bad effects from pred - I've been on it multiple times, at doses starting around 80mg/day I think.....no problems with bone loss either.....

But, as it gets pointed out - everyone is different!
 
I'm already happy to be on this site with you guys.

I'm new and all. being able to get real information about stuff I need to take is a real comfort.

For now Pred always helps me and no real side effect. I will be looking for them now though just to be on the safe side. I guess my depressed state for the last week is really self pity... Oh well
 
chrisnsteph1022 said:
It gave me mood swings (rage, mainly), night sweats, weight gain. I won't take pred again unless it's life or death.
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I'm with you. If there's any other option, I'm going to avoid steroids.

I didn't even take Prednisone, I took Entocort. It turned my anxiety up to 11, made me completely effing crazy, and made my migraines that were somewhat ok absolutely hellish and frequent. I hated it and I hated my life on it.
 
moogie said:
I'm already happy to be on this site with you guys.

I'm new and all. being able to get real information about stuff I need to take is a real comfort.

For now Pred always helps me and no real side effect. I will be looking for them now though just to be on the safe side. I guess my depressed state for the last week is really self pity... Oh well
Click to expand...

Welcome to the forum. Whenever you are feeling self pity you can come here and unload (see the "Rant Away" forum for example) if it makes you feel better. And I do hope you feel better soon.

Another thing about steroids is if people are on them long enough, my doc told me there is ALWAYS an eventual adverse effect that means they should go off of it (and that's not always possible). I think for most people steroids are ok in small doses for short periods of time. It's the extended use that becomes a problem. Extended steroid use can cause bone loss (not able to absorb calcium as well?), high BP, cataracts, it can also affect your lipids. But short term use I think the adverse effects other than how you feel are pretty minimal. It can also mess up your blood sugar (even short term), especially if you are diabetic.
 
Pred has worked wonders for me and am still on it waiting for aza to kick in. I feel better on it. My side effects don't bother me too much...night sweats, a bit moody(or a lot if you ask my family!) and it has given me very high blood sugars and i wasn't diabetic prior to taking it.

I haven't had the two side effects I had hoped for...the weight gain and appetite but hoping they might appear. I wouldn't want to be on it long term though as thats when it has its main issues.
 
When I was on 40 mg for 3 months there were times when I felt like a different person. Being very angry at random stuff etc.
 
At times my GF tells me I am hard to live with. She started to tell me that the last few months or so. I am pretty sure I have become harder because of the pain. it's hard ton be nice when you have 7/10 pain most of the time.

Now wait until I tell her that it can get worse on these meds... she will be so happy LOL
 
vonfunk said:
It reacts with people differently. Not everyone gets the mental side effect.....
Click to expand...

Who you calling mental?!?! Haha! :ybiggrin:

Apologies, my first post sounded very doom and gloom.
As others have said, Pred can be a lifesaver, and I wouldn't hesitate to take it if my GI or IBD nurse suggested it.

I think my psychological side effects were due to having pre-existing mental problems! (I really do sound mental now) I'm not sure how common they are, but they are included on the UK NHS choices website.

http://www.nhs.uk/medicine-guides/pages/MedicineSideEffects.aspx?condition=Crohn%60s%20disease&medicine=prednisolone&preparation=Prednisolone%205mg%20gastro-resistant%20tablets

I'm glad you've found some useful stuff on here already! Feel free to have a good old rant whenever you feel like it!
I guess, although some of the possible side effects are not so good, it's best to know what they are, than bury your head in the sand and pretend that they're not there?! Yes?
 
Hello and welcome,

When I was new to steroids I was also fairly ignorant to the bad side of them aswell which of course blunted any fear I may have had otherwise. Steroids are drugs that change the balance of certain hormones in the blood, namely adrenal hormones secreted by the adrenal cortex.

In short term, non-regular use one would not expect to develop any life altering side effects, but issues arise from chronic use. Because the drug alters the balance of hormones, or more precisely, raises them, the functions of those hormones become more pronounced based on the amount of the drug you're taking. Some of the serious side effects that can develop include diabetes (because high cortisol increases blood sugar), osteoporosis, (because the breakdown of bone tissue becomes faster than the replacement), high blood pressure (because high cortisol increases salt retention and increases potassium excretion), muscle wasting (I don't know why), addison's disease (which is a rare condition where the adrenals stop producing steroid hormones), hypothyroidism (again, no idea why) and cataracts.

Don't let those diseases scare you. I don't know anything about statistical prevalence of any of these diseases with respect to steroid use and of course, everybody has a different genetic resistence to some or maybe all of these diseases. I am merely pointing out the main reasons people are scared of this powerful drug. I have been on it twice and noticed only water retention (salt retention) both times and mild adrenal fatigue each time I reduced my dose on one course.

G
 
I like the feeling of relief at first. Prednisone will help with flares. I don't like the effects emotionally, and some physical changes also. My skin breaks out when I'm on it. I notice pains in my teeth and gums. I have difficulty sleeping.
 
When I take pred, I start off feeling like Astra-euphoric, super high-energy Wonder Woman. Then as I taper, I get insomnia, mood swings, major food cravings; I literally dream of food-I've even woke up chewing. When I stop the pred, anxiety kicks in, along with bloating and severe headaches.

I have taken pred off and on for 10 years, usually at least 7 months out of every year. I've gained 30 pounds and developed severe osteoporosis at age 34 (I'm 38 now) that left pinholes in my bones throughout mybody and fractured my left hip. It required a strong chemo drug Zometa administered in the hospital to heal. It causes the natural process of bones shedding and rebuilding to rapidly speed up, and is usually reserved to treat those with bone cancer; the pain it caused was the most excruciating I've ever experienced.

I'm not scared of pred, but it is a powerful drug and I definitely learned from experience to respect the risks and complications of it. I personally think doctors hand it out way to often and don't inform patients of these risks.

I've had to take it since these side effects, and I too feel grateful that this drug, although risky, will provide relief almost immediately.
 
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At higher doses I have a lot of energy, Its when I start to taper that I have severe panic attacks and anxiety issues. It also has long term side effects like bone loss, cataracts, and you can get dependent on them as well. Great for inflammation though.
 
I love everything about prednisone except one thing: It gives me Acne that would make Two-Face blush. I'm talking every square centimeter of my face populated by white heads as well as the deep painful and unpoppable ones. If that didn't happen I'd be more than happy to do bursts of Pred.

I love the appetite it gives me, I eat like a 300 pound athlete.
It fixes my GI when my GI is failing at life.
It gives me some water weight, not really a big deal.
I work out like a beast, it is a steroid after all..
I wake up at 7am and have energy all damn day.

Unfortunately, it seems to be one of those drugs that fixes everything and breaks everything all at once. It's just a super powerful drug that can really start to **** your whole body up if you're on it for too long. Some people still manage to be on it for years though it seems.
 
i took pred for my asthma and the only side affects i had was me eating alot more.. i only knew pred was use for asthma so i was shocked when i found out it was also used for this..

its funny because i was wondering, if the reason i only have mild crohn's was from me taking pred so much for my asthma attacks, and some how it helped keep it to this level?
 
Pred has saved my life....I was in the worst flare for the last year. Im still on it, but the euphoria has worn off....I dont have that great energy and happy feeling I had a month ago. Everytime I tapper down I get sick. It seems like I get flu like symptoms, my body hurts s bad...nobody can touch me. Every inch of me feels horrible coming off the pred....thats why Im stuck at 20mgs....Im afraid to go down more...but know I have to
 
As a recent inductee to the pred club, it has helped knock down the Crohn's symptoms. I've been pushing these for about 3 weeks (plus various other pharmaceutical skittles). From that perspective, it works.

The side effects are...eh...interesting. I didn't connect pred to my recent acne eruption until very recently. Not fun.

My hands periodically shake and, today, I thought I was going to strangle a pair of obnoxious, over-the-hill want-to-be-frat-boys for being rude to an attractive woman sitting between them on an airplane flight. It was uncalled for. Yet, it was rage...not irritation. I have no idea how I managed to keep from going nuclear. ( yet disappointed I never did say anything). Rage is not my bag. I'd consider myself fairly balanced ( like a US govt budget :ybiggrin:) it just wasn't me.

And oh..yes....the hunger is big time. I'm seeing if I can time-lock my refrigerator and food closet...:ybiggrin:

Supposed to get blood work results Friday...hopefully pred isn't ripping me a new one.

And...maybe I got the crap-batch of pred. I would love to get the energy rush. Only rush I get is the dash to the kitchen....grrrr
 
Prednesone is my wonder drug. On it I have just a few bowel movements a day and they are formed. I thank GOD it works for me and its on the market.

I also get very bloated and my face looks like a chipmunk. I have mood swings...they don't start right away and I don't even realize it...until I look back...I might cry more...It's 3:10AM and I am still on this forum...so I can't sleep...I don't have the energy from it like i used to have...I will be tired tomorrow...but i"m also a lot older now than the first time I had a flare and had to take it back in 1985...it makes me hungry...and my blood pressure has increased - I have to take twice the dose I was taking. THey say to watch your salt intake...which I find very hard to do...I find the pills make me gag so I take them with a lot of water and then follow with a bite of something so I don't taste them. I start Imuran tomrorow and i pray that I can tolerate it well and not vomit like everyone else seems to be doing...I really didn't want to go this route but the Asacol alone isn't doing the trick..everytime I stop prednesone I start my 15 bowel movements a day...not happy right now...but you do what you have to do I guess...
 
I copied this list from wikipedia so take it as you may. Maybe pred at 40mg for 10 days or so is not bad. But when you take pred at 40mg or higher(at least for me fluctuating between 40mg and 80mg) for months at a time these are some things that can happen!:

Major


* increased blood sugar for diabetics
* difficulty controlling emotion
* difficulty in maintaining train of thought
* weight gain
* facial swelling
* depression, mania, psychosis or other psychiatric symptoms
* unusual fatigue or weakness
* mental confusion / indecisiveness
* blurred vision
* abdominal pain
* peptic ulcer
* infections
* painful hips or shoulders
* steroid-induced osteoporosis
* osteonecrosis
* long-term migraines
* insomnia
* severe joint pain
* cataracts or glaucoma
* anxiety
* black stool
* stomach pain or bloating
* severe swelling
* mouth sores or dry mouth
* avascular necrosis
* hepatic steatosis

Minor

* nervousness
* acne
* rash
* increased appetite
* hyperactivity
* frequent urination
* diarrhea
* removes intestinal flora
* leg pain/cramps
* sensitive teeth

I know that at one time or another during my pred adventure I could really relate to A LOT of the items on the above list. Years removed from taking pred continuously, I will now only take it if it absolutely necessary.
 
These are side effects that MAY happen..not 'will' so should be thought about in the context of what the benefits of pred are...like stopping your GI tract from being totally bug***ered and ending up with bowel removed. I know what I choose...as a short term option though of weeks to months ,I wouldn't consider continual use unless nothing else worked.
 
littlemissh said:
These are side effects that MAY happen..not 'will' so should be thought about in the context of what the benefits of pred are...like stopping your GI tract from being totally bug***ered and ending up with bowel removed. I know what I choose...as a short term option though of weeks to months ,I wouldn't consider continual use unless nothing else worked.
Click to expand...


Looks like we are saying about the same thing! (notice the word 'can' as opposed to 'will');)
 
Wow - I thought I was on a high dose at 40. I can see where 80 would be hard to manage. I know at 40MG I wasn't loving it...but by 20...not so bad. Why is medicine always a double edged sword? Really. I mean...why can't they make something that will help us and not hurt us in another way? I wonder what is down the pike...do they have some new drug or treatment they are even working on? I should spend some time on the foundation's website...if I can tear myself away from this one...:)
 
I've been on 10mg since Nov and have over the last week been put upto 30mg as just out of hospital after flare. Find that it increases my appetite and have a massive moonface , bad night sweats and i look constantly flushed. wouldn't say i am scared of bein on it , and would take it again if need be. Just on so many tablets a day now , would be nice to stop taking a few of them. (P.s : the revolting taste dont help either- yuk !)
 
i have had great relive with pred over the years but at the moment am on them and i am struggling with bad side effects.not sure if its worth it.i am so fed up of being ill all the time
 
Sue-2009 - Perfect - that is just exactly it - love/hate relationship with it! I have to say, when I was younger and took it - I had a much better reaction. I had so much energy...I was in my 20's and up at 2AM cleaning my sock drawer! Now I sit in bed and my mind just runs...but it is a necessary evil...I suppose.

2nd day of Aza...I am not sure about this one...have a weird taste in my mouth...feeling just odd...might be the Pred...oh who the heck knows. I'm probably better off not knowing anything!!! Just feel medicated and I hate that feeling. My bum loves it though!
 
moogie said:
Fear of Prednisone.
Click to expand...

I am not scared of it, I just prefer not to take it.

The side effects I had were hideous. Bloody worse than having UC in the first place! I mean, what is the point of that?

I put on masses and masses of weight and ended up obese

It made me anxious

I had panic attacks

It gave me terrible mood swings with inner rage where I felt like snapping at any moment over trivial things. I remember having an overwhelming urge to stab to death a stranger in a train carriage who kept sniffing.

I experienced facial hair growth and almost grew a moustache. Not a good look for a female.

My face look noticeably mooned

It gave me terrible migraines where I would literally clutch my head and scream in pain

I begged and begged and begged my doctor to take me off it or reduce the dose, but he kept telling me it was good for my UC.

I finally took myself off it and restored my sanity.

But if it works for you, then great and good luck.
 
Question - Many seem to agree pred is best if not used for a long period of time. What is considered too long? Therefore, what is an appropriate length for a pred cycle?
 
Nytefyre said:
For me, 10-14 days. I won't go longer than 14 days unless absolutely necessary.
Click to expand...

Wow, that is a short amount of time. Is it enough time to bring down the inflammation without it coming back soon after stopping?
 
I took prednisone for the majority of 4 years. It was insane trying to come off of it. I had all sorts of side effects, most of them bad. In the end, I stopped taking all my meds, crashed, and 8 months later started over without the pred.

It seems to work really fast for me. But I refuse to let my body become dependent on it again.
 
I've been on it since Nov , And im really worried that that is far too long , Also this last week have a new symptom , which is insomnia , just been giving sleeping tablets to help with that. 22 tablets a day nowin total! i must rattle when i walk lol
 
I have been on and off Pred for about 4 years. I HATE it.
Side effects I've had are - Facial hair growth, a hump at the top of my back (permanent!!!), bad mood swings, weight gain, moon face, spare tire around the stomach and bottom back, swollen ankles and wrists, messed up my periods, messed up my teeth, messed up my bones, hair growing in strange places, eczema, dry skin, changed my sleep patterns (can sleep all day or not at all!!)
Probably a lot more, but thats the jist of it. I am now back on 20 mg, probably going up again, and I hate it but I try to keep a low dose to keep most symptoms down but even at 5/10 mg I have the hair, the moon face, the mood swings and the dry skin. It is a good drug if your that bad you can't move but I wouldn't take it if I really didn't have too!!!!!
 
Joleen I wouldn't be too worries just yet, I've used Pred several times, normally just for 2 a months at a time or so - but my last big flare required me to take it for about 5-6 months and that didn't have any worse effects than being on it for 2-3. I know everyone is different though.

I'm worried I'm going to have to go back on it soon to get my current flare under control. I've resorted to taking 40mg here and there for a day or two just to dampen symptoms down (like today for example, because I'm going out with friends and won't have much access to toilets!). I know I shouldn't, I always feel guilty because my Doctor probs wouldn't be happy if he knew about it, but until the Humira starts to do it's thing (if it ever does) I can't sit and do nothing, I have a degree to finish :(

The only side effects I really suffer with are moon face, spots and sometimes night sweats/increased temperature. The increased temp can be a bit annoying when you look noticeably red, but the night sweats are ok - just change bed clothes/sheets regularly, and I can deal with the spots since they're normally limited to my forehead and are covered by my hair. It's the moon face I absolutely HATE, it makes you look like you've gained a stone even if you haven't gained ANYTHING. If I really try and I can fight the raging appetite, and that normally prevents me from gaining any real weight. Still, what does it matter if your face makes you look like you've been pigging out? Lol. And didn't resist the food urges last time though. I just lost the weight I gained from last time (even a few pounds more) and will probs be on it again soon...
 
pred was a good mate of mine but it donre the dirty on me and gave me osteopenia,i cant seem to get of them now as ive been on them that long so cant get into remission but not everyone has these problems,make me wana eat everything i see lol
 
My first post - glad to be here. I decided to start here due to recent events.

My story:

Diagnosed with crohns in 1997 at age 20 after 6 months of severe bowel pain, bowel movements and weight loss. Also had major joint pain and swelling. I had episcleritis in one of my eyes (felt/looked like a bad case of pink eye) and it was actually an eye doctor who first suggested I had crohns.

Once I saw a GI and was put on a small dose of prednisone for about 3 weeks. Within days I felt like superman. After that I maintained on Asacol for about 8 years and life was ok.

Fast forward to 2006, I got real sick again (had stopped taking my Asacol - but I feel it would have happened anyways). I had dropped from about 170 lbs to 130. New doctor put me back on prednisone which lasted for about 9 months while I ramped up on Azathioprine. My max dosage of pred was about 60 mg/day. Once again I loved it, gained weight fast, hardly needed to sleep, felt like superman. 2 months in I developed bad abcesses and had to have them drained with a 1 week hospital stay. I felt fine leading up to it - didn't feel anything coming while on the pred until it was really bad.

Finally got off the pred in early 2007 after about 9 months. My doctor had me get a bone density exam and it confirmed osteopenia. High calcium levels led to the discovery of hyperparathyroidism in 2008. All my doctors claim there is no connection though.

From that point on I maintained on 100 - 150 mg of Azathioprine and felt good for a few years.

Late 2008 the fistula in my ileum got bad again leading to seepage into my blood. that was bad, finally had resection surgery of my ileum and about 5 inches of small and large bowel on either side. Never went back on pred though I'm still on Azathioprine.

Life has been fantastic since then up until recently. For the last 6 months I've been flaring. A small bowel follow through confirmed active disease much higher up in my small bowel. I'm working through that now.

More on point - this flare motivated me to follow up on some pain I've been having in my left hip. An MRI confirmed early avascular necrosis. For some reason this scares me more than Crohns - guess I'm used to it. I'm still functional but long walks can end up being very painful. It's still early in the diagnosis but all doctors seem convinced it's due to prednisone. I don't understand why it took this long to manifest, I haven't taken any pred for 5 years. I also repeated my bone density exam - awaiting results.

So that's why prednisone scares me. I had very few of the common side effects. I felt incredible on it and was even able to ween off of it relatively easily. But while I was on it I still managed to develop bad abcesses while feeling great. As of now it also looks like I also got one of the rarest and worst side effects - avascular necrosis. I'm 35 and not happy that I'll likely need a hip replacement in the next few years.

I know a lot of folks are on pred and I'm very happy it helps them. But it's a very serious drug, so please be cautious. If you have any sort of hip/knee/joint pain - get it checked out soon.

Thanks for listening.
 
Welcome to the forum. I'm sorry you have been through so much. I hope you are able to find some treatment that works well for you and doesn't compromise you any further.
 
I have been on pred. For ten years.. .at high doses of 80mg a day at times. It saved my life a few times when nothing else worked. I was was in the hospital many times on bowel rest. I was malnourished. We started upping the pred to 40mg and the doctor kept me on it for over a year. I now have severe oestesperosis. Broken hip....ribs....pelvic bone...etc. in the last 5 years. It was a trade off. Those side effect for me was bad but again the pred.was all the doctors could do. Kept me with a life. Short term wouldn't be as dangerous.
 
Big moon face, 20 lb weight gain all in the gut, mood swings, trouble sleeping, eyes are kind of blurry and can't taper off it without flare starting back up -

Want off of it badly as I don't need nor want anymore side effects

By the way, I'm on 40mg and can't get below it
 
Bamagrl said:
Big moon face, 20 lb weight gain all in the gut, mood swings, trouble sleeping, eyes are kind of blurry and can't taper off it without flare starting back up -

Want off of it badly as I don't need nor want anymore side effects

By the way, I'm on 40mg and can't get below it
Click to expand...

That's how I was when I was 12. Could not go below 40. They had to operate me nothing else worked.
 
As I posted above I had a lot of broken bones because of the oestesperosis side effect. I had taken over 60mg for over a year and then 40mg for several years. I got fat... had the moon face and all the rest. One day I coughed real hard and broke a rib. I fell down but not a hard fall... fractured my hip. I got stress fractures in my pelvic bone. I got 8 collapsed vertebrae in my back. And more rib fractures etc. This all happened from 2004 to 2006. It was a crazy time. I was still on 40mg because the predicted was essential not only for crohns but for MS that I was also diagnosed with in 2001. I had to be so careful even when I sneezed that I didn't break anything. In 2007 I went into remission. I have no idea why the gods smiled on me that day but I just got to ffeling good and tapered down to 10 mg a day with no problems. No crohns and symptoms for several ys and life was good. I am in a flare-up now that started in may. But this time I am taking 20mg pred.and 12mg entercort. I am getting fat and moon face even though the side effects aren't supposed to be as bad. My bone density is being watched.
Anyone who takes pred over 20mg for a long time has to weigh the risks against the benefits. I would still do it again because I almost died and for several years before I was so sick my life wasn't worth living. It got me the time... remnission happened and getting off pred was very easy. Nothing bad happened.
Prednisone is a wonder drug with the devil to pay.
 
I too love reading threads on these topics. And I too, have all these prednisone side effects. Thanks for the link you posted, I couldn't understand, how many times before on Pred, I was reasonably dealing physically with symptoms. Until I read about the prolonged use and weaning. This makes total sence now, so thank you. I don't sit up at 4 in the morning like some of you, but Iv had those Pred giters through some days on this lot (50mg weaning...slowly...on 40 ATM), and my last two lots of Pred, started the more adverse side effects. Yes the depression, though I didn't know it at the time, and this became worse. Then there's the array of physical, and yes, reading about all these mood swings so many of us with crohns and high doses of Pred expirience, I wouldn't have believed the side effects can get so severe.
So thanks again for beginning this thread, I think just weaning slowly and whenever possible, taking other meds to treat the inflamation, is all we can really do once physically the Pred puts things so out of balance.
Best wishes :)
 

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