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

[CINDY4]

HI,

My daughter also has a serious autoimmune disease, and has spent the past 5 years on steroids. She has repeatedly done several month courses of 60mg, and it certainly does change her appearance. The bad news is, right now while you are on that dose there is not a thing in this world to make the moon face go away (words straight from the mouth of her immunologist).The good news is it does go away. Many people find 10mg to be the magic number. It will keep you in maintence (with occaisonial flares), but allow the side effects to be manageable. Once you hit 10mg the weight and bloating, moon face, etc will all pretty much go away. You may see a slight fullness remain, and a couple of extra pounds, but it does get much better fairly quickly. My daughter spent 6 months last year on 60mg, and then we started tapering over 3-4 more months, getting her to 10mg. She has lost 20 pounds this year in the first 3 months of the year. She is very thin again, and all the steriod bloat is gone in her face. She is now on 5mg and doing fairly well, and at 5mg the side effects are almost completely gone. So it does get better. And you are right the side effects of steroids are too numerous to count, and many are serious. There is a great book that will help you know what to expect called "Coping with Prednisone". It is a really good book, and would be helpful with all the steroid problems. The eye thing I guess could be steroids, because they literally can cause just about anything, but autoimmune diseases can affect any organ, so if it keeps up tell your dr and you may need to see an opthamologist. Steriods can cause cataracts and increased pressure in the eyes, and at the dose you are on you really need to be seeing an eye dr regularly. Just read up about all this and ask a lot of questions. Take care.

Cindy

[JTD]

Hi Cindy,

Wow you are so helpfull. Thank you so much you have really helped me out. I am on a tapering of course & I am about to go down again today. It is so nice to know that the bloating & moonface does go away when you get down in dosage. 60mg of prednisone for 6mnths seems so high? Does your daughter have rheumatoid too?

Anyway thanks again I am going to the doctor today & I will find that book. Good luck & I hope your daughter is soing well still.

Cheers
Jade

[CINDY4]

My daughter has a very rare autoimmune disease called Churg-Strauss. You are right 60mg for 6 months is a ton of steroids, especially for a 11 yr old.

I have a love/hate relationship with steroids. I know without them my daughter would not be alive, and for that I love them, but I HATE all the side effects they cause. You are "fortunate", to only be on high doses for 5 weeks, you should get back to your old self quickly. I know in your shoes you don't feel fortunate, but I have learned it can always be worse. Hope all goes well. Take care.

Cindy

[JTD]

Hi Cindy

Yes you are right I am lucky to only be on that dose for a short time & understand completely what you are saying about LOVE/HATE relationship. I do appreciate that It could be a hell of a lot worse but it is allways nice for someone to put things in perspective if you get a case of the "poor me's" :-) I have never heard of that disease before but it is obviously very serious.

Thank you for your help. I have been to the doctor. As you know decreasing the dosage to quickly can cause major side effects including going into cardiac arrest. However My doctor has me down to 10mg +Plaquenill 200mg & salasapyrin 500mg & losac daily so that will be good,
Thanks again & I hope your daughter is doing well & that the doctors will come up with a magic NSAID for her soon!!
Take care

[nebr]

I recenly had steroid epadurals three in all for severe back pain. About 10 days after the third injection my face and neck started to swell. These injections are not suppose to be systemic, but no one can provide another answer for the swelling. I personally feel the injection went wrong and this is from the steroids. Has anyone ever experienced this - and how long before I look normal again?

[Diana2427]

All, Thank you very much for taking the time to post your comments! I started taking Prednisone back in February of this year. I started with 20 mg and was supposed to stay on it for a month, but since I was diagnosed with Myasthenia Gravis, my neurologist increased my dosage (10 mg per month) until I reached 60 mg. I wasn't aware of the moon face side effect and as soon as I hit 40 mg, I gained so much weight on my face! I'm working my way down now and I'm currently taking 15 mg! The only other bad side effect I've experience was the mood swings! I'm normally a very easy going person and I'm always in a good mood. I have to remind myself whenever I feel sad or depressed all of the sudden that that's not me but the prednisone. My doctor warned me about gaining weight so I filled up my refrigerator with fruits, vegetable and a lot of healthy snacks (yogurt/cottage cheese). I've been in prednisone for a total of 6 months and I've gained about 10 lbs. I think it could've been worse. I also try to stay active and exercise 3-5 times a week. Even if it's only for 20 minutes, it does make a difference. Don't get discouraged, stay positive! I keep telling myself I can chose to be sick and miserable or I can chose to be sick and happy. I think you live a healthier and longer live if you chose the second choice :-)

[tumbleweed1999]

I was started on 40mg Prednisone 5 days ago, so am just beginning. -:(  I have just managed to lose nearly 30 lbs and now this.  ugh!  At least it is encouraging that the "moon face" and weight gain are not a permanent thing as I tho't it might be.  Knowing there is a light at the end of the tunnel is definitely encouraging..-:).   I was diagnosed with Bridging Firosis stage 3, non-supportive,destructive Cholangitis (still have to research this one)  all being AIH related.

Will look forward to more posts on this.

[janzie]

I have sarted to reduce my steroids from 40mg as iv been on them for 3yrs Im finding lots of side effects head achs joint pain tired all the time. does any one know how long this is going to take. I have managed to get down to 12.5mg but have had to go up to 15.0mg as I could not cope. am feeling a little better since going back up but am disapointed. please help if you can

Janzie  

[sunlover7]

how soon after going on the pred did you notice the moon face?  i was on 40 mg (2days) 30 mgs (2days) etc for 2 weeks about a month ago but my hives came back so my dr started me on 60 mg (3days) 50 mg (2days) 40mg (2days) and THANKFULLY today i started w/ 30 mgs for 2 days.  i just looked in the mirror and swore my face looks round - could it be from the extra lbs i put on from the pred or do you think the moon face could be starting after approx 10 days.  i'm sooooo bummed, i had just lost 9 lbs and have already put 5 back on from these 2 terms of pred....  drs don't want to hear complaints about weight either - i'm about 15lbs overweight and they just brush off my complaints of weight gain - ESPECIALLY the thin ones...;(

[Teresa409]

I am on my 4th month of prednisone.  I started at 60mg a day and then went to 100mg per day, back to 60, then 60 every other day because of muscle weakness caused by the prednisone.  The every other day regiment caused my disease (Myasthenia Gravis) to flare, so now I am on 30 mg every day.  While on every other day, my face returned to a somewhat normal shape.  I have been back on the 30mg per day and now my face is larger than ever.  I do not want to leave the house, and am starting to get a little depressed (the disease alone is bad, the prednisone is making my attitude worse).  Don't get me wrong, I felt AMAZING when I first started taking the prednisone, and I am enoying seeing and breathing :).  It just starts to wear on you after this long.  Also, the prednisone has caused my menstrual cycle to be every 2 1/2 weeks, which in turn makes my disease flare.  AAUUGGGHHH!  Autoimmune disorders stink! (Can you tell I am having a bad prednisone day?)  I am usually in very high spirits, I work with kindergarten children, have 2 girl scout troops and 3 very active kids, so I stay very busy and involved.  

[Sharon1964]

Teresa,

I too am on a high dosage of prednisone for over four months.  I can totally relate to what you are feeling.  I have been on steriods in the past for a different problem from now and I can tell you that it will fade and pass.  The menstrual cycle will once again become normal as you taper off of the steriods.  Hang in there, I promise you that there is a life after all of this.  I keep telling myself the same thing as I deal with a moon face and  a total bloated body which I experienced back in the mid-nineties.  It's not easy for anyone, trust me.  Hang in there!

[kaboree81]

i too am on predinisone- 25 mg every day for the past 4 months. i have sarcoidoisis. i have lost my insurance and have not seen my dr in a while to go back and see if the predinisone has made progress. i have been feeling a lot better though, and i was just gonna stop taking the med. then i found out that that would be dangerous. my questions are...                                                                                                  1. where does this gas come from!! the bloating is enough for me, and not to mention the weight i've gained. i was about 180lbs before taking the med- im now 200!  while im still taking the med w/o dr supervision, is there really a lot to worry about?                                                                                                2. i dont drink that much- but i do have a beer or two occassionally- is dat ok with the predinisone?

[weelin]

Hi Linda here, just read your coments about pred. I too have been on high doses fopr over a year now for GRAVES DISEASE (which they thought at first was myasthenia) caused by overactive thyroid. The graves thyroid eye disease is the worst scenario specialist etc have come across in over 40 years as if it wasn't bad enough having this they don't wuite know what to do about it!!! After giving me radioactive iodine they made the ye condition worse. Thye bring the steroids down slowly but the eye swelling flares up again and they have to put the dose back up. I HATE the Moon Face and the 2 extra stone I have put on in weight. Reading some of these comments has made me feel a bit better in the thought that it will eventually go down. I have such down days at times and feel I don't want to leave the house (apart from the fact I can only go out if someone takes me out as I can't see properly just now). They are going to start me on radiotherapy now to try and see if this will help, if not apparently the disease evenntually burns itself out in a few years, well thats ok for the doctors to say its not them that us feeling ill, can't see, cant do my job as a legal secretary basically my life has been taken away from me and now Im fat and have a moon face inot the bargain. Hope you get on ok and get over this ****.

[Sharon1964]

Hiya,

I posted a bit above you earlier.  I'm in NO friggen way a doctor...but, I have had a long history of being on and off of prednisone.  You mentioned in your post about just going off of steriods altogether.  I do know from what my doctors have told me in the past to NOT do that.  Your body has spent the last several weeks/months building up with the steriods......like anything that is being built up, you cannot just "yank" it out of your system without serious side affects.  While I'm in no way familiar with your ailment that is causing you to take steriods in the first place....it would, most likely, make that problem not only come back, but, with a vengence.  

Gas is a common side affect unfortunately.  Prednisone has more side affects than most drugs I think.  I have an autoimmune problem and have been on many different kind of drugs for several problems and have found prednisone to be totally wicked in that aspect.  I too am experiencing all the negative affects and have days where I want to just crawl up into a ball and cry because of it all.  The only thing that keeps me going and positive is remembering the side affects fading in the past when I was tapering off of the steriods (usually around 10 mg to 5 mg) everything started to go away and my body started to feel normal again.  

Lastly, I like to drink wine in the evening and have found that to not be a problem when taking the prednisone.  I mentioned this to my doctor several months back and he didn't seem concerned with that...so I can't see the beer being any different.  

[FrankieD]

Hello,

I'm a 26 year old guy who is taking 60mg of prednisone to deal with complications from a kidney transplant (IgA nephropathy).  I'm also going through six months of cytoxan treatment (chemo) to try to save the transplanted organ.  I'm a bit of a fitness freak and when my face and body started seeing serious edema the emotional toll it took was devastating.  Still is.  Well I figured out a few things about prednisone (by trial and error) that this community may benefit from.  I DID gain weight (about 20 pounds) in over a month but I also figured out a way to LOSE 30 pounds over the next month while still being on the drug.  It was not easy and very few people will be able to do it (I mean VERY few) but here's how:  First off - I cut fast food out of my diet entirely - I mean ALL FAST FOOD!! Next, I cut foods high in SALT and SUGAR out of my diet, even fruits with natural sugar! Egg Beaters, English Muffins, Total Cereal, Lean Turkey, Jello and Sugar Free Popcicles work great! Last, I exercised like a man possessed.  My thing is the eliptical because you can run on it for hours and your knees won't hurt.  3 Hours a day (15+ total miles per day) was my normal routine.  The result?? I lost weight.  Now the ONLY thing I didn't lose was the stupid moon face and I'm convinced that just won't go away (although it looks better than it did).  I must tell you though that if you plan to give this a go, be prepared - cuz like I said VERY VERY FEW can make this work and it will be very frustrasting if you aren't entirely committed.  Even the slightest fall to old ways can mean a devasting result (I has a small bag of popcorn at the theater one night and it set me back 2 weeks from fluid retention).  I hate prednisone but I love life and to me it's worth it. To all those on prednisone with moon faces and side effects remember this: you are holding an ACE of spades and when its time to come off the drug it'll be time to show your cards.  I wish you nothing but the best!!

[Cindy21015]

I was on Prednisone for 9 months, 2 years ago for asthma.  I am still not able to get rid of the moon face!  I lost about 20 of the 70 lbs I gained right away and the rest is stuck.  Since then, I've had pain in my back and feet.  I've heard that Prednisone encourages arthritis.  Anyone else heard this or have problems?  For the past 6 months, I'm in constant pain and am now being told it might be Fibromyalgia.  One good way to get rid of the pain . . . Prednisone!  I don't want to go there again.  Any suggestions?  Any solutions to the moon face or help with the weight loss?  Whenever I see pics of myself, I can't believe how big I've gotten and how disgusting my face looks.  

Cindy

[xx_kk]

Yes, Prednisone is TERRIBLE BUT AMAZING!!

I have been on and off of prednisone for the past year and a half to help with ABPA related to Cystic Fibrosis. It definately helps me feel better but it is really difficult to have that confidence and feel comfortable in my skin. Usually i gain about 20 pounds, have an appetite that is ENDLESS... and the wonderful "moon face" - which, i feel, is by far the worst side effect!...

Anyways, thanks everyone for their comments - i actually came on here to see if tapering to about 7.5 mg and maintaining this dose would result in a lessening of my ("sexy") moonface!... Does anyone know where i can find info on this? Or have any info? Just to clarify my inquiry -

If i am at 7.5mg of Prednisone for a long period of time, will the side effects subside? - IN PARTICULAR... my chubby cheeks! lol

Thanks,

Annonymous

[paula1221]

I was just diagnosed with RA, I started to take 5 milligrams of cordisone today. Does anyone know if you get that moon face with that low of a dose? If so, how long does it take for it to happen. I've only had one dose and I'm not taking anymore until I get an honest and truthful answer. Quite frankly I'd rather have  the pain than a moon face and weight gain. Please, someone let me know. I'm probably being a baby about it, but I'd really like to know.
thanks paula1221

[J888]

Hi I have Lupus Kidney. I have been taking prednisone for little over 1 year now.  I started with10 tabs (50mg), and now I'm taking 1 tab (5mg).  However, it seems like 1 tab is not enough to control my lupus.  I have been taking high and low back and fourth for this past year and I absolutely have MOON FACE even though my husband convinces me everyday that I don't.  I really hate what this steriod does to me. I heard so much that it gives soo much of the bad side effect later on, but it works on patient with my type of lupus. Well all I can say is that it has not really been working magically on me yet.  
However, I have not gained weight at all though, I only have moon face.  I really want to get off it as soon as possible.  I'll cut down to half a tab by next week. My doctor says if my condition still active then I shall take cellceb.  Does anyone know about this cellcep medicine for Lupus (kidney(??
Thanks
J

[bloated65]

Ive been on pred. :( for 7months.
Anywhere from 80, then 60 then 40 and then 20 mg. Then my pain came back?
Ive been told I have orbital pseudotumor? My eye has BAD pain and eyelid sells bigtime. i hat e my looks.. I want to taper , But I dont know how. my dr. dont help. My periods stopped last month?moonface. hump in back of neck???????? 20 lbs gained or 15? well, my clothes dont fit..i am always bloated, and depressed/ i have to go back top work after 6 mos. im gonna cut down to / 20mg again...i take more when my eyelid hurts more?
I am so ashamed of my looks.....and it makes me bitchy? how do i taper? im a mess. I take diamox for the fluid. But not helping fast enough? help
Thanks-bloated65

[VCASILLAS]

Hello,

I have been prescribed prednisone for Crohns. Its a 6 week plan starting with 60mg for 7 days then down to 50 for seven day then 40 and so on. I am terrified of the side effects! But I know it is worth it if my flares go away. I just want to know if anyone out there had bad side effects even after only been on prednisone for a month. I am waiting until July 1 to start the meds because I want to prepare myself for anything and everything that might happen while being on it. Thanks for any help you can give me.

[Marsha703]

Hello All,

I've been prescribed prednisone for hemolytic anemia, been on the medication for about 3 months now.  Staring off taking (5) 20mg pills once a day and now I'm done to (2) 20mg pills day.  The side effects of the medication are horrible, but the benefit of taking the medication is LIFE!!!!  I'm having alot of back pain and joint pain in my knees and especially in my hands, I've heard that the medication can bring on arthritis.  The side effect that I dilike the most is the "moon face".  People I don't even know come up to me and say your taking prednisone aren't you??? :o)  All I can do now is smile and say yes.  At 1st I didn't want to go out with my friends because people would stare at me and you just don't feel comfortable, let alone desirable anymore, but hey at least I'm still alive.  And the side effects will subside so I've been reading.  So everybody hang in there.  :o)

Marsha :o)

[Kato510]

I have been on prednisone for the last 3 1/2 weeks, starting at 40mgs and tapering down by 5mgs each week.  The medication was prescribed to treat and autoimmune liver disease, and so far so good in that it is doing its intended job.  
I struggled with an eating disorder for over 10 years, so as one could imagine, hearing the potential list of side-effects of this medication was beyond terrifying for me on multiple levels.  
However, I want to echo what FrankieD said in a previous post.  I've stuck to a diet of no sugar, very low sodium, low saturated fat, and low carbs.  I religiously drink no fewer than 10 8oz glasses of water a day.  Usually more.  I also exercise 3 - 5 times a week, though nothing extreme!  So far, the only side effect I have had is insomnia, and I've actually lost 10 lbs.  The experience has actually served to further cement my recovery from the eating disorder, as well.  
One thing I HIGHLY reccomend is acupuncture.  I found someone who works with a team of physicians and integrative medical specialists, and has experience treating people for side effect prevention with prednisone.  And, she believes she will be able to help me taper off effectively and smoothly when the time comes.  I suggest asking a Dr for a referral of someone who really focuses on medicinal acupuncture.  
I am convinced this made a huge difference for me, physically, emotionally, and mentally.  
So while a lot of poeple are on much higher doses and side effects are different for everyone, I just want to share my experience as the anxiety of this medication has - so far at least - been much worse for me than the reality.  There are definitely things you can do to minimize side effects, and it's always beneficial to focus on what you CAN do as opposed to what you CANT.  

[NESSA17]

HI EVRYONE;
IM 15 YEARS OLD AND IVE BEEN  diagnosed WITH ULCERATIVE COLITIS AND IVE BEEN TAKING PREDNISONE FOR A MONTH OF 40MG BUT IM GLAD THE DOCTORS HAVE BEEN LOWERING THE DOSE 5MGS EACH WEEK. I HATE THE SIDE EFFECTS; ESPECIALLY THE MOON FACE PART; IVE BEEN HAVING MOOD SWINGS LATELY AND I HATE THEM I FEEL DEPRESSED; I GET MAD FOR NO REASON, I REALLY DONT LIKE THAT =[  
IS IT NORMAL TO HAVE A RASH ALL OVER YOUR BODY[EX.FACE, ARMS AND YOUR BACK?] THEY ARE REALLY ITCHY.

-nessa-