Moon Face!

[mharvey90]

Prednisone, the necessary evil wonder drug. I have been the most stubborn Crohn's patient when it comes to steroids, probably because of the wonderful side-effects I dealt with at ages 9-13 when my Crohn's was really bad, and had osteoporosis at age 12 because of it! However, after a 7-year-long remission, I got a flare up this March, and refused steroids for 2 full months of suffering, hoping it would get better, until finally I broke and gave in and started them about 6 weeks ago. I'm a 19 year old college student, and REALLY didn't want to be dealing with any side effects.

I started up on 40mg a day, and started tapering down after one week, and about 6 weeks later I'm finally off. I was told repeatedly that "you're not on a high enough dose to get any noticeable side-effects, and you won't be on them long enough anyways." So I kind of trusted them, and didn't care much anyways at the time because of how sick I was. However, the past few weeks I have started to notice my cheeks getting the famous chubbiness to them, and I kept asking family members if they have noticed too and everyone has replied No. But I know now that it isn't all in my head and it is noticeable because an honest friend mentioned it to me.

Just wondering if anybody else has been in a similar situation with the prednisone dose-wise....and can offer me any insight as to how soon you noticed side effects, and how long it took them to go away.

 

[SpoonNinja]

well i am or was on the same dose you are, they started me on 40 and weekly i went down, now im on 10mg a day and i most def have the moon face majorly! ive also gained about 10lbs so even on this dosage you can have side effects, i wont be stopping the 10mg of preds this week tho because theyre not working an my dr is thinking of starting me on remicade, so untill thats sorted out he wants me to stay on 10mg. im not sure how long it takes the moon face to go away, hopefully not long after stopping preds but ive heard it can take up to months for it to totally go away.

 

[NatalieMT]

I was on pred for about 5 months (most of the time at a high dose!) and developed the dreaded moon face in March of this year, I personally didn't notice it to begin with but I look back on pictures it was quite obvious towards the end, although none of my friends passed comment. No other side effects thankfully though, no weight gain, didn't feel particularly moody etc.

I stopped the steroids in early April or so and there was no sign of the chubbiness just a couple of short weeks after that. It all went reasonably quickly, although it wasn't fun feeling that self concious.

 

[mharvey90]

Thanks guys. And yeah, I haven't gained any weight surprisingly, since I've been eating like crazy! And it's so weird how you don't notice it yourself, since you look at yourself in the mirror every day so it's hard to notice a change in your own appearance. I did get the "roid rage" a little bit, and increased anxiety as well. Could've had worse side-effects I suppose, I'm just glad to be off and feeling better now, and hope it stays that way!

 

[BWS1982]

My 2 cents: 40 is common and usually considered "high" but not extreme, and as for time span, 6 weeks is an average "rough draft schedule" that often works fine (I say it that way because it seems most docs will end up playing it by ear based off you)... ie: if you're better, they'll allow the 6 weeks to be final, if you're about half way through or less and still just as bad (meaning you're going down on pred, and no benefit came from the highest doses previously) they may hold you at a higher dose or bump it back up some. With pred the shorter the better, as we all know, but a doc's concern is usually focused on the well-being and disease rather than side effects and self-esteem (though they aren't the ones who look like they are sucking on a beach ball). Side effects concern them, but they only become the primary concern when the risk vs. benefit ratio is out of balance. They require feedback and attentiveness to judge this ratio. If you have little to no benefit to the pred, a good GI will pull you off it, provided it's been given a fair shot. 6 weeks is not that long, but sides DO manifest in some manner or another in most of what I've read here and experienced personally.

The longer you're on them, the harder it is on the adrenal glands and your body to restart the functions they used to do that were halted when the artificial steroids were started, (sort of a wake up call when they notice you're tapering close to the level it used to make itself whilst without pred). One GI told me it's about 7.5mg a day.

The other thing to keep in mind is with prednisone there is a delay in the effects, be it the adrenal glands, moonface, appetite, sleeplessness, calcium leeching, or anti-inflammatory qualities at hand....it could be days, weeks or even months, depending on how long one is on them (and dosage) before every trace of the cycle of pred is nonexistent. With only 6 weeks, it'll probably only be a few weeks tops before the last sign of the pred is present. When someone is on them closer to 6+ mo's...year, or longer, it could be several fold that time-line, or in some unfortunate cases, the effects are permanent, such as steroid-induced diabetes or osteoporosis, etc...

I hate to say it but if my GI put me on 40 mg to start, and only 6 weeks total taper to 0mg, and then proceeded to tell me that's both "not that high of a dose, and not that long" I'd think they were giving me a white lie to make me at ease and were more concerned about getting me better than having me worry about side effects. Noble but devious at the same time.

 

[Josh]

Hey i just got off pred 2 days ago. I started off at 40MG a day for a month! then started to taper 5mg every 2 weeks.. so i was on it for a long time.. and i got horrible moon face, eating, and gained alot of bad weight on my stomach and chest.. During the time i was inactive tho.

Im not too sure when the moon face started, one day i was like like.. wow im fat lol.. even my friends asked what the hell happend to me

 

[fenway1971]

josh - my experience was just like yours. one day, i look at myself and said, "whoa, i'm a fatty"

i was on pred for 9 mos. finished about 3 weeks ago and am almost back to what I looked like pre-pred.

worst drug ever. i'll never take it again.

 

[mharvey90]

Haha well I think in my case, i'm so stubborn about the prednisone because of what I dealt with in the past, that my doctor and family had to start feeding me white lies to get me to just take it, otherwise I never would have and my Crohn's would have gotten out of control to the point where I needed surgery. So despite the side-effects, I'm glad I took it because I feel a lot better now.

And I always say that I'll never take prednisone again, every time I take it. But when you start to feel bad and it gets worse and worse every day, and you realize how soon it will start to make you feel better, usually within a few days, sometimes it just has to be done!

Thanks for all the replies

 

[cheeky]

i was on that dose, and was tapering for a few months... fortunately i never experienced the moonface - not sure why... even when i gained weight from eating a lot more and i retained water, the moonface didn't happen.

 

[mharvey90]

hmmm, weird how everyone experiences different side-effects. Lucky you!

 

[crohnsappleadams]

I was on Prednisone for about six months right after my junior year of high school. Unfortunately they started me on it about two weeks before I took a job at an ice cream and burger place that had really great food. Really, really great food. I went back to school 40 pounds heavier from a single summer of overeating while on roids. I didn't lose the weight for two years, but I wasn't motivated to lose the weight either. I can tell you, however, that my metabolism never recovered.

 

[Yvonne1]

I'm currently on 40 mg Pred and hating it. Just got off steroids in January so gutted am back on them due to having a flare up. Been on them for a week and noticed my face filling out nicely and constantly look flushed! Getting very moody and grumpy and can't sleep. (which is why I'm up at 3am!). When I finally got off steroids in January it took a few weeks for everything to go back to normal. Take care. x

 

[Sparky]

I've been on pred for 5 weeks, started at 40mg now down to 10, and the moon face has made an appearance all of a sudden It's driving me mad, and it didn't happen the last time I took pred. I didn't realise that flushing was related to pred - I'm always fairly rosy-cheeked, but I'm much more so than usual, and my face feels constantly too warm (so does the rest of me actually, feels like I'm slightly overheated all the time and not in a good way).

My DH swears that he wouldn't have noticed if I hadn't pointed it out, but I think he's a big fibber as I don't see how you can miss the fact that suddenly I don't appear to have cheekbones and I look like I'm storing food for winter in my cheeks instead!

 

[Maverick7]

I was prednizone dependent for 2 years once, so i know how the moon face side sucks. If you are well now and are in remission then try cut down your carbs and your sodium. Drink a lot of water. That will help the moon face some. Good luck

 

[Lucy_Poppy]

I was on 50mg oral pred with a 3 day course of 100mg IV methyl pred 4 times a day ... The side effects where not too bad to start with but then i noticed mycheeks where getting bigger , I had muscle wastage in my arms , and i was just getting larger and my hair was thinning . The only light at the end of the tunnel was that a week after I stopped them completely my cheeks started to go , and now after 3 months nobody would even be able to tell i was ever on steriods
Unfortunatly my crohns is steriod resistant so I didnt even get any remission .

 

[mharvey90]

Aww, thanks for all the replies. I'm in bad shape again after stopping the prednisone, just went to the doc, and he knows how anti-prednisone I am, so he started me on Entocort (5 days ago) and I don't feel any better yet whatsoever. Any of you have any experiences with Entocort? =/

 

[Sparky]

I've just gone back to entecort after stopping pred - side effects were just too much, Saturday's bonkers crying jag whilst trying to work out the best way to remove myself from my dh/ds's life was the final straw!

IME, Entocort can take anything up to 2 weeks to work, I think I usually start to feel a difference after 7 days or so, and then that improves noticeably by the end of the second week.

 

[mharvey90]

thank you
i'm almost ready to self-medicate with prednisone it's so bad!

 

[canope]

This thread is a year old - probably no one will see a reply. Oh well. I'm responding because I'm on prednisone again, 40mg, after previously getting extremely fat and moonfaced on it and swearing I'd never take it again. I feel my cheeks getting puffy just reading this. And yet what can I do? Nothing is controlling this flare. What is worse - fat and ugly or surgery/death? Those seem to be my current options.

 

[MapleLeafGirl]

Definitely worse to be fat and ugly I'm joining you with the moon face as I'm back on prednisone as well. I try and just delight in the fact that I feel pretty good. I am a puffy girl who only poops three times a day and has no pain

 

[canope]

Pooping just three times a day with no pain sounds awesome. I would love to be there! I poop about 50 times a day, and often with enormous pain (though less since I started the prednisone a few days ago).

Until this latest flare, I told my doctor I'd rather die than be fat and ugly, which is sort of an amusing thing to say but also sort of stupid, and as I got sicker it got stupider so here I am puffing up. (((sigh!!)))

 

[Astra]

You're not gonna puff up straight away canope! it does take a few weeks, and besides, it does go down very quickly.
If it hadn't have been for the Pred, I'd be dead now!
I wouldn't hesitate going back on it if it happened again.
I'm not sure if you're joking with all this, I really hope so! Dead or with a bit of weight gain???
Time to assess some things canope?

 

[canope]

I'd rather be fat and ugly than dead, but I don't enjoy being fat and ugly. How quickly you become moonfaced appears to be fairly individual. I got moonfaced pretty fast last time, and it was extreme. People didn't recognize me. I went from being fairly pretty to not pretty. It was depressing.

 

[hunniebunn88]

I have been on the dreaded pred for about a month now at 40mg, and my doc is now letting me decrease my dose by 5mg a week, but I have now noticed the moon face, and it is so depressing. The thing that sucks the most is that I am still getting flares
My boyfriend tells me that he doesn't notice anything (lil white lie) but everybody is commenting on how "cute" my chubby cheeks are.
Has anybody else noticed the "apple belly" which I have heard people talk about? I am noticing my obliques are getting smaller, but it looks like I have a little pregnant belly (love explaining I'm not pregnant to family HAHA)

 

[scifi-enthusiast]

Has anybody else noticed the "apple belly" which I have heard people talk about?

Well, pred is known to cause abdominal dissension. I know when I'm on 40mg I have to lie down to button my pants, but once I taper to 30mg I can button them while standing.

But yea, I have a moon face real bad right now. Especially with the acne craters that pred causes.

Prednisone: Free moonface in every bottle

 

[hunniebunn88]

Yeah, it sucks!
I'm noticing that I'm wearing my yoga pants a lot more often now since it is the only pants that are able to do up. I haven't been gaining any weight which is weird, but my belly is still getting bigger :|

 

[Entchen]

Hi Ashley: Yoga pants are a saving grace, aren't they? I cheered when it became acceptable to wear elastic waist pants in public, lol.

I'm trying to figure out if I'll need to buy new dress slacks for work, though (starts in 2 weeks). I've been unemployed for 4 months and don't have the money for a new prednisone wardrobe! Am hoping that since my GI and I compromised with 30 mg (6 weeks total), maybe the effects won't be very pronounced. It's Day 2, and so far aside from a few minor mood swings and a headache, I'm feeling fine (yippee!). Have tremendous hunger already from Crohn's, so I may or may not notice if that increases. My workouts will be increased in intensity until this is over -- might not prevent everything, but I'm hoping it gives me a competitive edge in the battle of Pred v. Kelly.

 

[Crohn's_Doll]

Ah yoga pants and PJ bottoms are the best!!!

I gained 15 pounds on pred (5 months) the moon face appeared more when tapering. When I was 7 they put me on a high dose and my face blew up so much, the other kids said I looked like the campbell's soup kid LOL. I went from malnourished to being the second biggest kid in the class. Maybe I will have the nerve to post a pic of my campbell's soup kid days. I often wondered if the other kids thought I was a different person, new kid on the block.

My last dose of pred saved me!!!! I had tons of energy and could eat food! Real food! Sure I packed on some pounds and lugged around my cheeks and extra chins, but it was well worth it.

 

[Entchen]

So nice to hear that you consider the trade-offs well worth it!

 

[canope]

Has anybody else noticed the "apple belly" which I have heard people talk about? I am noticing my obliques are getting smaller, but it looks like I have a little pregnant belly (love explaining I'm not pregnant to family HAHA)

YES!!!! OMG, it has been driving me CRAZY!!!! I've been "enjoying" moonface for a while now, but did not know that the basketball in my lower abdomen also was from Prednisone. I even mentioned it to my doctor last time we talked and he mumbled something about Prednisone, but I didn't get that it was a side effect. I've only gained about 5 pounds since I started it, but I look about 6 months pregnant.

I was on 40mg for a while (started on intravenous 30mg in the hospital - just got a bill from the hospital that is causing me heart palpitations). I've been tapering 5mg every 3-4 days (Mondays and Thursdays). That's a fast clip, but I seem to be handling it just barely, and it's important to get off the Prednisone fast for many reasons (not the least of which are my poor bones). I'm down to 20mg now.