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Moon-face caused by Prednisone

JTD
Hi,
I have been diagnosed with Rheumatoid Arthritis. I am 25 & am on Prednisone(60mg),salasapyrin(500mg)& Plaquenil(200mg) per day. I have developed a large moon shaped face. I am swollen in the face & neck & hate what it is doing to my face. Will this swelling & fluid go away when I come off the steroids in five weeks? It is causing me to be depressed & family have noticed the change in my face & are worried for my health. I have heard some scary things about these drugs, prednisone in particular. Please is there anything that can stop the Moon face & would I benefit from taking a dieretic too?? P.s I have had an eye twitch every day for the last 3 dys in my left eye, lasting for approx 20secs & about every 10 mins? Could this b another side effect & should I worry about it as it is annoying & starting to get sore?
Thanks
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Avatar universal
I was on predisone 40, five years ago and lost 75 lbs and didn't get the moon face.  I cut out salt and sugar in my diet ,read all labels for salt & sugar content and made choices based on less salt /sugar.
Shredded wheat has no salt or sugar and skim milk has less salt/sugar than other milk.

I would make custard with birds custard powder(no sugar/salt ) and skim milk then add fruit to sweeten it...this stopped me wanting sweets. I had potatoe & banana every day (potassium )

Good luck ...God bless
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Avatar universal
Rozana... I pray you health is MUCH improved. I live in Los Angeles and my son (15) was recently diagnosed with Lupus. What a shock!

Our doctor is a great believer in POSITIVE thinking. My son naturally tends in that direction (thank GOD)... We are in the weening off of Predinsone period; He is a high school student a I pray when he returns to school the kids are kind.  

Thankfully, he has not been on the steroid long - 3 weeks of 60- starting 50 for a week than 40 and eventually 7.5.

We are keeping the FAITH. I liked your post. STAY STRONG.
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Avatar universal
Hi,

Just wanted to find out.... how are you doing now ?
I recently got diagnosed with the same problems as you, and was
put on 70mg of pred and cytoxan IV every 3 weeks.  Am 5 months into
the treatment, and the doc has started the taper down ...60mg this month.
Have huge moonface, thick neck, apple top ...etc.

Hope you are doing much better now.  Did your moonface etc. improve once you tapered down ?  

looking forward to your reply.

cupertinoraider
(***@****)
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Avatar universal
i just came across your post, i realize it is from some time ago but was intrigued and also wondering how your doing? Also what immune disease do you have? I have Ant-gbm which has caused kidney disease and am currently looking for alternative holistic approaches to health. Are you still on this diet?
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Avatar universal
Just like to ask is anyone have flushing and sweats on Prednisone ??? mine are terrible ?? thanks
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Avatar universal
Hi redhead1976, I too have been diagnosed with Polymyalgia Rheumatica and have been on Prednisone 15mg for 9 weeks, have now come down to 12.5mg and reading these posts am grateful I was only on the low dose but yep have all the same side effects as well... been reading quite a lot and it seems the side effects do go after time when you come off.  Sister suffers from Colitis and is often on Pred and her moon face comes and goes with the tablets so hopeful that this will happen to me !! I see you have been on them for 11 years, your Poly must have been very painful.  I'm trying to be positive about all this, Kids and husband been very supportive, but you know in your head its not how you want to look!! One question, are you getting flushing and sweats with the tablets?? i'm experiencing terrible sweats but not sure if its the menopause or not !! hope your condition gets better and as with us all on here, hope the side effects go too !!!
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Avatar universal
oh hey also theres a facebook group for PV, pretty active group by the looks of it.
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Avatar universal
Hi yureeka, I got a positive PV diagnosis recently also and yeah wow, having a support network is very important.  My wife really came through for me and friends I didn't even know I had came out of the woodworks.  Workplace has been understanding also.  That ***** that your BF jumped ship but hey now you know what he's made of so its all for the best.  Hang in there, the drugs work.  Stuck at home I've finally gotten control of my life in a practical and spiritual way.  I'd try to get out of the house a lot, go on hikes and nature and such; dense crowds are threat ofc but not going crazy is an important goal also right?!  Anyways I'm no professional, just saw your message and wanted to show some support and a smile :)
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7551291 tn?1391906101
Hello fellow pemphigus warriors! Gads...isn't life just full of surprises? I have never in my life been sick - don't even take aspirins - and then, in Feb of 2013, became polkadotted. Nothing serious, and the doctor just thought it was a viral rash. I moved to a cooler climate, and the polkadots became less pronounced. But by summer, they were back again, and became bumps that didn't like to wear seatbelts (or undergarments, or anything that would rub them). And I got the mouth sores and lesions in my scalp/hair falling out from the roots, too. Three doctors later, in late August I was diagnosed with pemphigus. Initially was placed on 100 mgs of prednisone. Then added 175 mgs of azathioprine.

This seems to have worked well as far as the pemphigus attack. And yeah, I got most of the side effects/symptoms mentioned by others here. I manage those, but my worst problem has been isolation. Man friend could not handle this disease nor my prednisone mood swings, so he's gone. No family members who are stuck with me. I have one 'best friend' who has dumped me entirely, another who due to her government job/economic situation is moving across the country, and a third who is going through a major depression of her own. I have zero moral support. Because of where I am, the type of work I do (law enforcement), and the severity of my pemphigus, initially my doctor ordered me to avoid public contact/contact with communicable diseases. So I spent a couple of months talking to inanimate objects and watching a lot of court television. Yikes!

One thing that nobody seems to want to address are the socioeconomic ramifications and side effects of such diseases and the treatments. Holy moley...I do NOT want to go on Disability...but may have to. I currently have my house on the market for sale. No idea where I will go if I sell it, but it will be someplace that is low maintenance/easy care/no stairs to fall down on. I am now down to 5 mgs of prednisone, but I still have the moonface, and the prednisone gut...and the backache that accompanies. No way can I move well enough to do my job or most work that involves a great deal of physicality/coordination. Fortunately, I did not get the werewolf look (though I can grow a few whiskers), but none of my clothes fit and I cannot get my feet into any shoes besides clogs. I have been on FMLA type leave from work, but that time is up and I am now have a no income/no insurance type situation looming large.

So far I've handled it. I laugh at my moonface, and yak with a few people on the Internet for society. But a support group (even a cyber-support group) sure would be helpful. I know that each of us is different as far as our physiologies and how to manage our disease and treatment...but we can all still use some moral support, right?
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Avatar universal
hi mindy006. I was diagnosed with Eosinophilic Gastroenteritis and about 6 years ago so when I read your post I was so surprised bc our condition is very rare and I havent met anyone until now. It took almost a year before I was diagnosed and another of trial and error with prednisone, MP6 and other meds. 6 years later and I am at 10 mg daily;however , about 5 months ago some of my symptoms have returned. Diet is so key and when i wander off, my body quickly reacts but now one of my symptoms is worse..burning itchiness all over and heartburn My dr. added 2 new meds now.  Please tell me about your condition?? Its been a frustrating painful journey..a support system is so key. My husband has been very supportive with the changes I've had to make for myself and my family (foodwise). I hope your condition is under control..whatever I can help you with just reach out..be well
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Avatar universal
I have been OFF prednisone for 7 weeks. For RA I started on only 5 mg for 2 months then switched to 10 mg every other day for the next month, because it wasnt working. Tapered off correctly for the last 2 weeks. At 7 weeks prednisone free I still have Anxiety, Heart Racing, Insomia, Blurred Vision, Brain Fog, Moon Face, memory loss and a constant ear ringing. Although they are not as bad (these were pretty severe) as the first 2 weeks of my taper, they are all still present and very annoying. I do Not feel 100%, I may be near 65%. I expected more at 7 weeks free. My face still really bugs me, I have puffy Jawls and around my jaw line,  my eyes are still swollen, but not as bad. I used to look like Shrek/Pig, now I just look odd i guess, I dont get the weird stares anymore so I know its better, but some do look at me funny so I guess its still noticeable. I cant tell, others can, but i do know I still don't have my normal appearance yet, hopefully it comes back. The texture of my face skin is not normal, I have lots of pores and loose skin. I feel mostly irritable with horrible mood swings. Always tired, my eyes are very dry. I'm very Impatient. Easily depressed if I think about my appearance. Always anxious. Still hoping I can get my 100% back soon, gonna give it another month or 2, the length of time I was on prednisone, if things dont change then I will have to learn how to accept the new look I guess. Still read these post for hope...thanks all..
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Avatar universal
Mindy006 - my cat actually had this disease. He was on pred. too for awhile, then we managed it with nutrition.  Maybe a holisitic nutritionist could help you so you wouldn't have to take so much prednisone.
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Avatar universal
Hello,

I am getting a biopsy soon to check for sarcoidosis.  I have the neurological end of it though.  It caused me to get transverse myelitis, which is spinal inflammation.  I have been on 60mg of prednisone since April.  I am hoping to taper soon.  I was doing some research and found that Imuran can treat sarcoidosis.  Do you know anything about this drug?  I really want to get off the 'roids. The moon face thing is killing me!!!
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5457341 tn?1368271576
Hey everyone, I am 20 years old and suffer with rheumatoid arthritis, quite severely :( and I can only describe it as life changing, it came on so suddenly and pretty much ruins everything... I am currently on 28 tablets a day, sometimes more if I am having a bad day. I always feel so down and depressed it's so hard because no one understands, they can't see the pain I am in because my leg isn't hanging off or I haven't got wounds exposed all over my body. There are mornings I would wake up and it feels like the bones in my legs have been crushed into tiny pieces and someone is trying to lift them. I can't describe how sore it is... the only thing i can do is tighten my fists as much as I can and scream it out. Sometimes I have to hit the wall behind me to try spread pain somewhere else (probably not the best idea in the world... but it helps :) ..but then the next day I could be absolutely fine, it is so unpredictable. Before I was diagnosed with this disease I did a lot of modeling and was so confident and happy with how I looked. I loved exercising and worked my *** off which always kept me very thin. Then Prednisone came along :( I would do anything to get off these horrible things! :( My Rheumatologist has me on 60mg (12) a day for the last 3 months. Every definition on my face has been filled... I hate it so much, I look terrible :( I don't even have a chin anymore it is just round. It actually hurts it has swollen that much. I have light blonde hairs growing on my cheeks!! and my this weird baby hair on my forehead. I haven't had a proper nights sleep in months my heart is constantly racing and I would wake up with sweat running from every pore on my body. Why do I have to suffer on the outside as well as on the inside. I have done nothing wrong all my life to deserve this and it feels like everything has just been taken from me :( I am craving so much food and put on loads of weight but trying so hard to eat as little as possible. I have been so down all the time and I guess that doesn't exactly help my condition either. It is only now 6 months on that I am actually starting to accept the fact I have this.. okay it is s**t and I would do anything in my power to make it stop. Lying around all day and feeling sorry for myself is not going to take it away or make me feel any better mentally. Okay I have my bad days.. but everyday is a new day and I take everything one step at a time. If i wake up and feeling okay I make sure I take full advantage of my day ahead... flare free! ...I wake up and I feel like I just want to die .. then I dose myself with tramadol and try to sleep it off as much as possible. I have been blessed with a beautiful boyfriend who has helped me through so much. There are days where I would tell myself, he doesn't have to suffer along with a girlfriend who has arthritis, along with constant tears and moaning about her appearance, but chooses to stand by my side and still tells me that I am the most beautiful girl he has ever seen. He is what keeps me going and I honestly don't know how I would have managed without him. I look forward to the day they start to reduce my steroids and I eventually get my face back, but until then I am trying to stay as positive as possible and take everyday as a new day.It could be worse, without these steroids I could be flaring up a lot more. So I guess for that reason i am thankful they are helping. Thanks for reading x
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Avatar universal
i was diagnosed last year with uc but my flares have been more and more frequent lately. i am considering surgery but my GI would like to explore pred. first. wondering if you have noticed any improvement to your symptoms? I am really nervous about using steroids and would like to avoid them at all costs
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Avatar universal
this was truly helpful. thanks so much for your detailed assessment. you made me feel as if there is someone who truly understands how dramatically this drug impacts your life. I have been on prednisone off and on for more than twenty years. it has saved my life even though I would never have imagined I could become so ugly! to the point now that I don't want to go out especially if I might see people who knew me when I was extremely attractive. I hate the looks of "what happened to you?!!?" anyway what can you do except thank God that you're still alive and try to have an attitude of gratitude and humility.
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Avatar universal
Thanks- kinnda in the dumps this morning and needed to hear your encouragement. God bless
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Avatar universal
Hi I was dx with UC 2 weeks ago...they put me on predizone and it messed up my eyes...then he took me off of it and put me on lialda which my insurance does not pay for lucky I got samples cuz it made me sicker then a dog OMG....I am 59 and my grandmother died of colon cancer.when I was in hospital they did biopsies no C yet..but he said it will turn into it with a few years...I had so many plans for the 30 years since my father is 90 thought i would too....monday they are starting me on new drug aka cancer drug <they use for treating the inflam and the bleeding...I think I am going to tell my dr these meds are making me so sick that I want atleast 1 week off before I start a new one...
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Avatar universal
Karina
I also have AH and would appreciate if you would share your course of
treatment, how long you have had it, side effects etc.
Thank you so much
Beverley
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Avatar universal
I have been on and off Prednisone for 5 years now. I have an extremely rare eye condition called "VKH" it causes retinal detachment of the back of the eye and can cause blindness if not controlled by Prednisone. Anyhow, this drug has had me on quite the roller coaster. I have had every emotion, and there are times I have been suicidal. Although it has saved my vision it has made other parts of my life miserable. I was on prednisone while pregnant with twins and that was horrible!! I have had the thinning of the skin, moonface, buffalo hump, rages, and of course the weight gain. Every time I get tapered down and taken off my condition returns. I can't seem to get this weight off. Once I get off the meds and start to lose weight, I get put back on. This drug has helped and ruined my life all at the same time. I wish sometimes I could just never leave my house cause I am so depressed. When I do leave my house I feel like wearing a sign stating, "yes, I take prednsione!" I have never been a vain person really but when it effects your body as much as it does it is very depressing. I only hope I can get tapered off this drug sometime soon so I can resume my
Ire and be happy again. Be well everyone!!!
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Avatar universal
I am now experiencing the moon face. I was given a steroid treatment for my sciatica. It didn't help the sciatica, in fact, it made it worse. Doctors say there are no other alternatives as it is not surgically treatable and I reject narcotics and steriods. If anyone has answers about getting my normal face back or for that matter..sciatica treatments, please let me know. I am always in pain and need a cure.
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Avatar universal
I have been on Prenisone on and off for 15 years. I have Lupus and a rare hereditary illness called Alpha one Anti Trypsin deficiency. There is no way around the side effects of the steroids, the moonface, excessive hunger, and weight gain are just the most obvious. Right now I am on 60 mg. and have been for 5 days, after two more days I'll go down to 40 for a week and so on until I taper off. I had to restart after only being off for week. The moonface is starting and I have gained 60 pounds in the last 2 years. This happened before and I do have some good news, although it took a year of steroid free living and eating right I lost all my weight and Next week I start chemotherapy to hopefully get the Lupus in remission. Even though the side effects are bad it sure beats the alternative. It's hard sometimes to look in the mirror but but  have to remind myself that it's only temporary and my self worth is not only based on what I look like. Hold your head high and others will look up to see you! Good luck all! God Bless!
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3187265 tn?1344796818
Hi! I'm fourteen and was diagnosed with minimal change disease. (I should grow out of it by the end of puberty.) Right now they have me on steroids to get my kidneys working again. I was on 60 mgs a day and now they're starting to taper me off. I'm on 40 mgs every other day now. Soon I'll be 30, then 20, then 10. However, I still have the insanely large moon face and it's driving me nuts. I gained twenty pounds, too, just because I have a raging appetite. I don't even want to go in public like this. It *****. And because of the minimal change, I had originally gained 70 pounds of water weight. I lost it all in two weeks, then gained this ACTUAL weight back from steroids! School starts soon, too. Does all of this weight just come off? Do you really notice than much change in appetite? And how fast does this godforsaken moon face take to go away? Thanks!
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Avatar universal
Hi everyone, I'm 15 and was diagnosed just over 2 years ago with a rare auto-immune disease called 'microscopic polyangiitis' with crescentic nephritous and pulmonery haemorrage, which resulted in vasulitis. I was previously on 100mg of prednisone which caused me to develope a reasonably puffy face. But don't dispare! Most doctors won't keep a patient on a high dose like this for very long and as the dose starts to reduce, so will the swelling. Up until yesterday I was on a mear 1mg tablet daily, but after some bad news of a flare up again yesterday, I have been put back up to 25mg for two weeks, which will then begin decrease again after that. I am hoping that this relatively small dose for a small amount of time won't cause another bout of swelling. It's nice to read comments by other people who are in the same postition though, and I will let people know now that you are not on your own and it can only get better. The only way is up!
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