What can I expect while taking oral steroids?
October 31, 2013 11:49 PM   Subscribe

I just had a complicated detached retina repaired. Now my eye doctor has prescribed oral steroids (prednisolone). I don't know how long the overall course is planned to be but I'm tapering down from 60mg/day to 7.5 mg/day over about 8 or 9 weeks, when I see the doctor again. I'm freaking out about side effects and withdrawal. Please tell me your personal experiences with oral steroids and suggest what I should do (without giving me medical advice). Thanks
posted by mgrrl to Health & Fitness (28 answers total)
I have rheumatoid arthritis that kicked off when I was 12, so I've taken Prednisone off and on for most of my life, before I was old enough to read about the side effects.

The good: when you're in pain they help so much. Oh my God, SO MUCH. There really is nothing to compare them to. I'm so grateful to have been able to use them when I needed them.

The bad: such cranky, very hungry. I become a crabby little hungerball when I'm on prednisone. But I personally find that easy to endure, because I've only ever taken it for short courses, like you are, and it's so effective with inflammation that I'm happy to spend a few weeks frowning into my Doritos.

My advice? Prepare yourself mentally for the irritability. Stock up on high protein snacks to try to keep the hunger at bay. Check in with your doctor regularly, and be open about your concerns about side effects. These drugs are no joke, but they're also incredibly helpful when you need them.
posted by nerdfish at 12:09 AM on November 1, 2013 [4 favorites]

Seconding the hunger, I was ravenous myself. Also if the treatment is over a longer term you might develop moon face, where your face bloats a fair bit caused by excess cortisol during the treatment period. But that is usually for long term prednisolone use, yeah.
posted by bumcivilian at 1:10 AM on November 1, 2013

I was on oral steroids after surgery. I was really irritable and agitated. I couldn't sleep well, either. It was really distressing. Things got much better when I realized that the mood change was due to the meds; I could separate myself from the really harsh reactions pretty easily and see it as a side effect rather than something in my personality. The sleep was taken care of with a little Tylenol pm or something similar.

Tapering off it was not a big deal, as I remember.
posted by GenjiandProust at 2:28 AM on November 1, 2013

I have taken it numerous times with the same exact doses. It really works well and the side effects in my case ran the gamut from mild (beat red bloated face), emotional mood swings, and trips to the ER for gall bladder like pain and vomiting.

I take something for sleep, and have something for pain and vomiting on hand. Heartburn can be an issue - take whatever works for you. I don't make major decisions about anything if I don't have to. I try to have things around that comfort me and I give myself breaks if I find myself crying in strange places for no reason. Near the end of tapering I always experience this weird tenderness feeling that seems to start on my scalp and move down my body....its is very weird is all and I have never done anything about it.

It is one of my least favorite drugs to take but it is also really effective in treating what ails me. Good luck.
posted by cairnoflore at 3:15 AM on November 1, 2013

I had a prednisone dose for poison ivy, and I'm not sure of the dosage but they tapered down the dose. Are you tapering down, or if you have trouble with withdraw can you ask your doctor to add tapering to your round of meds, or take the last couple in halfs or something?

Nthing agitated and hungry. I felt, kind of like a robot. It's hard to explain. It was subtle but noticeable--it was hard to concentrate, but at the same time I felt agitated like I was overly-focused. I still did everything I needed to do in my daily life, but just felt a little off.
posted by shortyJBot at 3:22 AM on November 1, 2013

N-thing: always hot, really irritable, hungry.

To be clear irritable means I fly off the handle enough at work that i have to give myself a timeout occassionally fir being a dick. Hungry means like when a zombie says "braaaiiiinsss' and then devours the living.

I always warn my close coworkers/ and now they know what to expect and try to carefully remind me that hey ass its the prednisone, calm down.
posted by chasles at 3:33 AM on November 1, 2013 [1 favorite]

Oh ya and so fidgety. Sooooo fidgety. It feels like and pill induced anxiety attack.

Jeez this stuff sounds horrible. Frankly it is s little. But add others have said when you need it for various conditions (for me it's lungs) the stuff is like a miracle drug.
posted by chasles at 3:36 AM on November 1, 2013 [1 favorite]

I have taken prednisone multiple times, doing the typical tapering down method. I had no side effects at all, ever, unlike others here.
posted by gudrun at 5:10 AM on November 1, 2013

I gained a lot of weight and suffered from bouts of completely absurd rage. Like "WHY AREN'T YOU OPENING FASTER YOU FSCKING USELESS DOOR!!". Prior to this I was so emotionally level as an adult I wondered if something was wrong with me because I didn't get upset like other people did. The strange thing is that the emotional instability lasted far longer than the medicine. It is almost like it taught me how to be upset.

On the plus side the medicine was critical as it let me breath.
posted by srboisvert at 5:50 AM on November 1, 2013 [1 favorite]

I've taken it in short doses when my asthma is flaring up and nothing else would really help. My dosages are shorter and smaller than yours. My only side effect is a *really* heavy water retention before my next period, and a heavier period (sorry if that is TMI :/ It's always hard for me to judge these things). I usually just keep more ibuprofen on hand that month. Reading the other answers, I feel very lucky.

Nthing the "they fix stuff like nothing else". It's amazing how much better my lungs feel - they usually go from feeling like they've been roughed up with sandpaper to pain free in less than 12 hours.

Good luck - I hope you feel better soon!
posted by RogueTech at 5:55 AM on November 1, 2013

I've had to have courses of predinsone for some pretty horrific hives.

Hungry. Oh yes. Sugar cravings. Plan for being hungry and don't succumb to eating crap. Turkey sandwiches are good for this.

I didn't have irritability, I was WAY more irritable when I was crazed with itchiness.

Be prepared for instant relief. THAT'S why it's the most amazing drug class. It works!

I will tell you a story. I tried to ride out the hives because I was freaked out by the idea of taking steroids. Finally I was insane, so I drove to the drugstore in my PJ's (couldn't stand to have clothing on) and went through the drive through for my Rx. The guy said, Seven Ninety-Three. I blanched and gave him a credit card. Was I surprised when it was $7.93 and not $793, like I thought. At that point, it didn't matter, I would have paid ANYTHING not to itch anymore.

So take the drug, be aware, and feel better soon.
posted by Ruthless Bunny at 6:04 AM on November 1, 2013

Just to add another data point, I've taken prednisone a few times for inflammation/pain issues and don't remember significant hunger or irritability. What sticks in my mind is the sweet sweet relief everybody else has mentioned plus a very-much-welcomed energy boost. So it's possible that you will just get to benefit from the medication's positive effects. Meanwhile, best wishes for speedy healing!
posted by nevers at 6:10 AM on November 1, 2013

I have also taken it for severe asthma and like others, I get:

Irrational irritation/rage/crankiness
Hungry. Seriously, EAT EVERYTHING.
Jitters and restlessness.

But yes, they fix stuff like nothing else. Overnight magic.
posted by epanalepsis at 6:16 AM on November 1, 2013

I took a high dose after a month long, deafening inner ear inflammation. My doctor scared the hell out of me about the side effects, but all that happened to me was that I got instantly better and wanted to hug everybody I saw.
posted by pazazygeek at 6:18 AM on November 1, 2013

Had a nasty bout of strep that they gave me a prednisone for. Was prepared for the crazy hunger, as that's what happened to my dad when he took it.

Was NOT prepared for the hallucinations which can be a possible side effect. I didn't even know it was a side effect until after my boyfriend started looking like a zombie.
posted by timesarrow at 6:27 AM on November 1, 2013

I've taken steroids only once, a "pack" for an irritated elbow over the course of several days. They turned me into an absolute gibbering idiot (more so than normal) and I have refused them ever since. My first instinct with everyone was to grab their head and start punching. I couldn't sleep or relax and missed a week's work. I knew I had problems when I found myself washing the same load of clothes over and over and over because I couldn't remember if I had used any soap. Never again... (YMMV)
posted by jim in austin at 6:57 AM on November 1, 2013

I've been on varying levels of prednisone for about three years now - right now my dose is 5mg a day. It's a maintenance dose for dermatomyositis. If it makes me irritable, I haven't noticed - but it may be indistinguishable from my actual personality. :)

I find it's better for me to take it in the morning, since it's a revver-upper. If I take it at night, it's hard for me to sleep.

At a dose as high as 60mg, depending on how long you stay there, you may have weight gain and your blood glucose may rise. I never went up any higher than 40mg/day, and that only for a brief period. The weight gain is weirdly characteristic - your face, a bit around the upper part of your back, if it's minor. It goes right away when you drop your dosage. Note that the weight gain is actually not inevitable. It's even possible to lose weight while on prednisone; I have. You just have to watch yourself pretty closely, because you will want to eat a LOT at the high end of your dosage, and you will want to eat all the time. I'm a person who can't gain weight on low carb food, so at high dosages I would just stuff myself with steak and chicken and eggs - presto, no problems with my blood glucose or my weight.

I also had some weird hair issues I attributed to the high end of my dosages. Over the course of my first year on prednisone, my hair went from straight-flat-shiny to curly-frizzy. When I lowered my dose, after about a year, it went pretty straight again. But it was a very odd year for someone who never had to deal with curls before.

By the time you get down to 7.5mg a day, that's about as much as your adrenals put out naturally, so most of your side effects should be greatly diminished or gone.

Good luck!
posted by kythuen at 7:05 AM on November 1, 2013

First time I took it I found myself wakeful and agitated. I once got up at 4am and was so agitated - I couldn't go running in the dark - that I got up and scrubbed the bathtub. (With tissues, which was all I had on hand.) But more recently I took a course and found I had no side effects at all, and I was so, so grateful for the immediate pain relief it gave. Good luck. It's worth it in any case, even if you do get side effects.
posted by fingersandtoes at 7:34 AM on November 1, 2013

I've taken prednisone at varying doses between 80 mg/day and 1 mg/day due to ulcerative colitis. Scanning the rest of the replies it seems like most of the side effects I experienced have been covered. I would note that most of the side effects did not kick in for me until after I had been on high dose (>= 40 mg) prednisone for more than two months, so if I were you I would not be too concerned about things like Cushingoid weight gain (face, upper back, trunk) and thinning skin.

However, one side effect that does kick in pretty quickly is mania. For me this went away over time and as my dose decreased, but my experience was similar to what fingersandtoes describes. During the prednisone induced mania, even though I was incredibly weak and had just been discharged from the hospital, I wrote all of my grad school applications in about 18 hours. I'm not a doer of drugs but I definitely had that Jesse Spano "I'm so excited, I'm so scared" feeling.

My advice overall would be to stay hydrated and cut your salt intake (this will prevent the steroid induced water retention) and to take a calcium supplement approved by your GP. Steroids are calcium wasting and longterm use can ultimately result in bone loss (I have osteopenia at 26). Not likely during an eight or nine week course, but there's no reason not to add a pretty harmless supplement to minimize the damage done.

Finally, your doctor has probably told you this, but it's worth reminding: you should take your oral steroids before 4 PM to minimize the disruption to your body's natural hormonal cycles. The higher doses are often hard to tolerate all at once first thing in the morning, so it's OK to split them up between breakfast and lunch (for example), but take your last pill before 4 PM.
posted by telegraph at 7:40 AM on November 1, 2013 [2 favorites]

Look: steroids can and do have side effects like those being described here. But they usually only start to assert themselves if you're taking very high doses and/or taking them for quite some time. Two months isn't likely to make much of a difference at all. Certainly not in the long run. One of the most significant side effects is weight gain, but you'd need to take it a lot longer than two months for that to start to be an issue.

Don't get me wrong: some people have negative reactions right away. But most don't, and the benefits are so incredible that the risk is worth it.

Don't freak out. Take your pills, and odds are everything will be fine. If you think you're experiencing side effects, call your doctor's office. But as you'll be tapering your doses off pretty quickly, I'd be very, very surprised if you have a bad experience.
posted by valkyryn at 8:10 AM on November 1, 2013 [3 favorites]

Agree with valkyryn. I think your taper is short enough so that you'll see few side effects, and the taper itself is designed to lessen withdrawal symptoms, isn't it?

*My experience with prednisone is as follows: I've taken it for ulcerative colitis, both in one-shot tapers (40 mg and down, about a month) to calm flares, and once for six months while waiting for a bigger drug (imuran) to kick in. For the monthly tapers, I've never had any problems, and the pred brought me amazingly speedy relief. Granted, during the six month taper I had trouble sleeping, moon-face, and an exciting incident involving spilled popcorn and many, many tears. But that was six months, and at full strength. I really think you'll be fine.
posted by pepper bird at 8:34 AM on November 1, 2013

I took oral steroids once, during my first pregnancy for severe asthma issues. It was a shorter timeframe than yours (maybe 7 days?) and I don't remember the dosage to compare to yours. For me the only side effect was increased hunger and energy levels, and my blood glucose levels shot up (that hangs around for a while afterwards). Nothing about it was unpleasant, I felt SO much better very fast.
posted by Joh at 9:17 AM on November 1, 2013

Nthing the idea that the minor side effects I experienced while taking large-then-tapering doses of prednisone (3 times over approx. 3 years) were vastly outweighed by the incredible pain relief and healing that prednisone gave me.
posted by BlahLaLa at 9:25 AM on November 1, 2013

I don't think I've ever taken Pred myself, but both my parents have and it affects them differently. My mom gets really "high" - energetic, fast-talking, twitchy. My dad gets super cranky. I don't think either felt any withdrawl with the tapering.
posted by radioamy at 10:14 AM on November 1, 2013

I took 40mg tapering to 5 over 8 days. I felt a bit cranky at the start and then day six I just started to cry. I just had tears pouring down my face for no apparent reason, starting up every 15 minutes or so. While I don't cry much when I'm not on medication, I have experienced excessive crying on two other drugs, granted with not quite the same pattern.
posted by carolr at 1:59 PM on November 1, 2013

Prednisolone and prednisone are different steroids. You may want to ask your doctor what the practical difference is, if any.

You did ask about oral steroids in general, though, and hopefully all of this advice still applies. Just know that your medication is not the most popular version and people will assume you mean prednisone.
posted by soelo at 2:09 PM on November 1, 2013

Response by poster: Thank you thank you! I feel calmer now and hopefully my eye will heal too.
posted by mgrrl at 11:51 PM on November 3, 2013

Response by poster: I finished my 12 week course of steroids with two weeks of 5mg/day, and then stopped last week. So far so good - I see the eye doctor in a couple of days.

My muscles and joints are achy and I had some digestive upset, but overall I feel good! Thanks for the reassurance.
posted by mgrrl at 8:20 PM on January 6, 2014 [1 favorite]

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