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?
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.
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.
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.
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!!
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?
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 :-)
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.
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
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...;(
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.
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!
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?
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 ****.
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.
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!!
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.
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
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.
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(??
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
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.
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)
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.
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.
Ive had lupus since 2005. Ive had tree bad flare ups from lupus and it is now started to affect my kidneys. I was just put on hemo dialysis three days aweek plus Im now tanking 100 mil of prednisone a day. My face feels like its going to explode. With everything going on with and around me I think this keeps me down the most. Im suppose to get married in a month or to and Im starting to feel bad because of the way I look! Anybody know a way to reduce the swelling?
hi all. thanks for writing your comments here. it has helped me today, another HORRIBLE day of prednisone hell. i have been seriously ill for 8 months been told ever other week I'm likely going to die from lung disease (i'm 35) and after a painful lung biopsy have been told my lung problems are almost all reversible... after a year on high dose prednisone. i was on 40mg a day for a month a while back and was so out of control from rage and crying and insomnia and panic/suicidality, ravenous appetite, that they lowered me to 30. then after biopsy they said i should be on 100mg to cure me, we settled at 60mg. it's been 24 days. The moon face started about one week in. i've gained 8 lbs. i am an emotional wreck. i have at least one rage filled attack per day where i am screaming and want to kill somebody or destroy something. some days i am so filled with hopelessness and worry i just want to die. my body changes (after just losing 30 lbs and being a work out fanatic my shortness of breath makes it impossible to walk up 2 flights of stairs without resting) face changes, acne, excess body hair (oh my god please make it stop i'm like a chia pet and i'm so afraid it is going to get worse) double chin, puffy eyes and cheeks, absolutely uncontrollable emotions and mood swings, inability to be logical or reasonable. i dont want to leave the house, i'm panicked and scared all the time. i never sleep. ambian gives me minimal relief (just started taking it) i feel like i'm losing everything, except my lung functioning is returning and i'm not going to die from this illness (they assure me THIS week) i understand light at the end of the tunnel, but livig like this is unbearable most days, almost impossible the rest of the time. am i alone with the severity of this? or are all the others like me too busy hiding the sharps and crying in a corner to write on this board? thanks for listening :)
figures, forgot to mention what HELPS. no eating after 8 (7pm is better) no salt, no sugar, exercise, even just a walk every day, anything physical, i walk like a grandma on the treadmill but i still do it, sometimes it is the only thing that stops my crying. no alcohol, support and understanding from loved ones, it's not you, its the drugs. good luck.
I have been on prednisone for 5 months now for UC. I am 16 and hate the moon face! It is embarassing and some people dont even recognize me. I am down to 10 mg per day so i am hoping to see some changes soon! When i started at 60 mg i ate everything in site, couldnt sleep and was very weak. I was wondering if anyone knows the average dosage when you start to loose the side effects?
I am also 16 and am on predninose i'm on it for WG. I agree with you the moon face is embarassing and like you some people don't recognize me either=( I started out at 60mg back in october and have been going up and down since then at the moment i am down to 221/2 mg and will be lowered 21/2 more mgs in 3 weeks if the blood work looks good! I know how it feels to not be able to sleep and being very weak its not fun at all! I was wondering if you would happen to have a myspace address or facebook if so what is your addresses for both? I hope to hear from you soon!
I found that even on 10 mg of prednisone for 1 and a half months that I gained 7 lbs. This while exercising (ballet, cardio at gym, bike riding) about 5/7 days a week and eating around 1300 calories per day. 7 lbs may not sound like a lot, but when you are only 5 foot 2 it doesn't take much to get a pookey pouch. I"m tapering off this week and hope that these pounds will come off without too much trouble.
P.S. I was put on prednisone because of suspected lupus or mixed connective tissue disease (positive ANA). Over the course of a few months, I started having terrible pain and stiffness in my hands, feet, wrists and ankles (bilateral pain). It got to the point where my pointer finger would get 'stuck' in a trigger position. I also had swelling of my feet, edema around my knees, and puffiness on my fingertips. Within a week or so of going on the 10 mgs, I started having less pain and I month into the treatment I was as good as new. We're hoping that the inflammation will not return once I taper off.
i have been taking prednisolone for 6 weeks and in the past 2 weeks got moon face really bad. seems to have just come overnight then got really bad quickly. i was on 50mg for 2 weeks and 40mg for 2 weeks, down to 30 now for a week and im tapering off 10mg a week so should be on 10mg in 3 weeks. is this a long time to be on prednisolone? im not sure what long term is?
does anyone know if moonface will go away as i reach lower levels or do you have to be completley off? is it different for everyone?
im so depressed about this i dont even recognise my face anymore : (
Hi I have been on prednsone since Oct of 07 I started out at 60mg and i have been up and down since then I am now down to 20mg i have gained 27lbs while on it, does anyone know when the weight gain and moon face will start going away?
please someone write back at the age of 16 it is very hard to deal with these symptoms:(
Hi Christina.. I am also 16 and on pred for chrons disease. i was looking on this post to c how long it takes for my moonface to go away ( if i ever get off the drug) ii have a bad monface as ive been on it since Februry starting at 40mg for 1 month and tampering down to 0mg then having to go back on it shortly after finsiheing as i had annother flareup again starting at 40mg for 1 month and then tampering, then i got down to 25mg and had a bad flare up and had to come home from my holiday cus i didnt bring enuf mediction to reduce my stympoms and stomach pain, so had to go bck on starting again at 40mg for 2 weeks then tampering, now i have reached 25mg and i am hoping this time i will get of the drug, but i am not getting my hopes built up... I also hate having a moonface and i understand how depressing it can be for you... i try to avoid going outt as i hate how my face looks although my friends say its not that bad but they are probly use to my fat face now...i cant wait to gett of the stupid tablets and count down every dayy to get off the drugs. Wednesdays are my days i reduce my tablet by 5mg and i love the day to just be able to luk that i am 1 week closer to getting off them so i really hope i will this timee .... I really hope you get off your prednisolone too. U love it for helping ur diseasee but hate the sytomps and weight gain.. hope everything works out for you... x x x x x
I'm an 18 year old girl recently diagnosed with Susac Disease. My specialist tells me I'm the 15th person in the world to have it, even though the internet claims around 200. I started on prednisone at the end of March. It helps to make the disease I have go away faster, rather than the 5 years it takes. I started off at 60mg and am now on 5mg. The "moon face" will start to disappear when you get down to 10mg, but will not completely go away. You, your family or friends will notice the difference. My moms cousin was also on prednisone for breast cancer. She told me that it took her approximately 6 months to lose the weight, and three-four weeks to completely lose the "moon face." She has a very slow metabolism, however. My specialist told me that the quicker your metabolism is, the faster the weight will come off.
I'm 70 yo male, hard to believe but....I'm diagnosed with MS, RA, Cluster Headache, and serious COPD.
My trip with steroids started with 1 G. IV over 3 days every three months for the MS. Did the IV Solumedrol for 10 years until 4 years ago
That didn"t hold me so they put me on 1 G for 1 day monthly. Everything was fine until it destroyed my Immune system....3 Pneumonias in 3 months, 1 hospitalization got a hospital borne colitis (C. Differens) which almost killed me.
This happened 4 years ago.
Since then, I've been dx'd wit the Rheumatoids Arthritis and the Cluster Headache. Unfortunately, all of my conditions including the COPD respond well to Prednisone.
I frequently go ona 60 mg step down dosage for 2 weeks and in between I stay on 12.5 mg. 12.5, after experimentation was the lowest maintenence dose that was effective.
With careful diet, I've been able to keep the weight gain to 15 lbs, but the moonface is tenacious. At 12.5 I'm right on the edge. If I quit completely, it will go away, but as soon as I restart even at 12.5 mg the damn moonface comes back.
That's enough for this post. I have a WORLD of Info and Experience to share with you guys.
"ll be back with more
I'm in my 50's, was very healthy and not used to being ill or going to doctors. This summer I was diagnosed with Wegener's Vasculitis. Anyone out there have it? It gave me terrible swelling of the glands from the neck up, headache and finally double pneumonia. Before they diagnosed me after 10 days in the hospital, nothing was helping the pneumonia until Prednisone, a wonderful, terrible drug I was started on 60 milligrams and finally now the Dr. is taking me down 10 mgs. a week. I hate the moon face, struggle to keep the weight off with exercise, but am ravenous all the time! Sometimes when I am cut down another 10 mgs, I get side effects like headache and overnight weight gain of as much as 5 lbs., but it's usually gone the next day. Dr. plans to keep me on 10 mgs. for two weeks and then go down one mg. at a time. I hope this moon face goes away, but mostly I hope my symtoms don't flare up, because I really hate being on this Pred. I'm also on some chemo drug for inflammation. That doesn't make me very happy either and an antibiotic (bactrim, I think, now three times a week). It's good to hear that the moon face will eventually go away and I can really feel for everyone's story. Good luck and God Bless to all.
I am on Prednisone for a condition called Temporal Arteritis' I started with 60Mg a day for a month...then down reducing gradually over the next year.
Yes...I can't sleep well....eat like a horse...very anxious and high strung...etc etc.
Quick question..Does anyone have an answer for helping reduce the Moon Face or even helping to make it not feel so uncomfortable
I've got many months to go to get down to a daily dose of lets say 10 or 15 MG a day.......so I am likely in for a lot worse.
Any thoughts....cold compresses....allergy type medication...any ideas at all.
As far as I know, steroids increase the body's metabolism of fat, hence the weight gain and moon face. I'm in the middle of a course and am experimenting with the logic that the less fat you consume the less there is to metabollise. I recently had 3 days of 500 mg methylpred iv and have been tapering down gradally with oral pred since then (starting on 40 for 3 days).
Anyway, by completely cutting fat from my diet I've actually lost a bit of weight and the moonface doesn't seem anywhere near as bad as it has been in the past with similar doses. Maybe it's a coincidence.
Obviously it's tough. I have a huge appetite normally, love junk food and can indulge myself because I'm a healthy weight. On steroids my appetite is twice as big and my cravings for junk even worse.
It takes serious will-power.
Anyway, I might be barking up the wrong tree but try going the extra mile with your diet next time. Accepting the weight gain and other associated side-effects is the wrong attitude.
im so upset - i don't know who to talk to - I took my 87 year old mother to her rheumatologist, who is an arrogant pig but my mother loves him? Her RA is so bad she is confined to her home and using a walker just to go to the bathroom. Dr. started her on 60mg of prednisone for 3 days and then gradually down to 20mgs in 2 weeks. II don't know how long she is to be on 20mgs. but I do know he wants her to take another drug along with it called Methalexin or something like that to keep her on so that the disease will flare up again (ill find out the name). He read all the side effects to her, had her sign a paper and had me witness it to say that this was discussed. After listening to all the side effects and how he just read them off like it was NOTHING, I became more concerned. Is this course of treatment very aggressive for a frail 87 year old woman who is literally skin and bone. She trusts this guy since 1991. When I asked him if he had a treatment that wasnt so aggressive he told me in a very smug and obnoxious way "Well I used my last magic wand last week, what would you suggest." Then continued speaking to my mother. I don't even know if he knows ALL of the other meds she is taking from her regular internist and her eye doctor for glaucoma. What should I do. I feel like an idiot for not telling him off in the first place but I didn't want to upset my mother in the office because she is in so much pain and very depressed. And anyway, the important thing is my mother, not my frustration of wanting to kick him in the....
I was on 60mg of prednisone for Graves Disease with eye involvement for 21 days, long enough for the Tapazol (thyroid med) to kick in. I started noticing the moon face after only 21 days, but at the same time could start tapering off since the thyroid med had kicked in. I have been on 20mg a day and have had a moon face for 3 days. I plan to go off the prednisone all together in the next few days.
For those with Graves Disease, it took 25 days for the Tapazol to kick in. Not based on the labs, but based on the cessation of the symptoms. I've tapered off the propanolol as well. For the record, the Iodine uptake test did worsen the symtpoms of Graves disease for me including my eye problem and I am opting for Tapazol for a year instead of radtiation. I will not be considering radtiation in the future. I would rather have surgery.
I will write back to inform how long it took the moon face to go away completely after stopping the prednisone. I don't expect to have to stay on any with the thyroid being controlled by Tapazol.
I'm sorry for those who have to take prednisone. I didn't recognize myself in the mirror for the last two days and was suprised my sister and husband didn't notice it. My 17 yr old son walked in the house last nite and took one look at me and noticed right away, then the others started noticing after he mentioned it. My son does love me! hee hee
Surely someone will come up with a med to control the swelling head! Help us Lord!
I have been on pred after having my first surgery Jan.2008 for an orbital tumor. I have had 2 other surgerys since that and am on deck for Proton therapy soon. The pred is easily the worst part of all the operations ! Every time I taper down from 75 mg they bump me right back up to buy time for the next procedure. I am not happy about the side effects and I certainly don't feel comfortable in my body right now.(Moon-face, hump on neck, big belly, fur! ) Not to mention how lazy my eye is since the surgerys! I look nothing like I did a few months ago! I want everyone out there to never feel alone in this. I think of all you going through your own situations and having to take the Pred and I actually feel comforted and I don't feel as alone. Thank you everyone for your posts.
Good luck on your journeys.
I am glad I found this site, it gives me encouragement. I have dermatomyositis, an autoimmune disease & have been on prednisone for about 7 months. I have gained 14lbs, have TERRIBLE acne, does amyone else have this problem? I have a very round fat face too. This kills my self confidence, but the Dr is decreasing my pred while increasing my other meds. I am currently on 10, but still experiencing the acne and moon face. I am also experiencing a swollen neck & hair growth on my arms and face. I am 28 yrs old and embarrassed to go out in public, bc I have had ppl actually say, wow u have gained weight, & then I explain my problem. But reading everyone's post gives me encouragement that this will go away. Thankfully, when I go back to the Dr next month, my pred will be cut below 10 & Im praying these side effects will get better. Its bad enough to deal with a disease, but also dealing with side effects of meds, things more difficult...
Hi I had dermatomyositis . I say had because one thing I found that has helped me through this tuff time in my life is to stay positive! I started feeling sick in July 2008 with pain all over my body then was barely able to move and get out of bed. So I was put on 60ml of pred. I had heard that it would make me gain weight and that I would get the moonface as well but it didn't happen Thank God! . I quickly went and saw a naturopath went on supplements and went on a strict diet. No yeast,glutten free ,no salt ,no sugar diet trust me it worked! I did lose 18 pounds but I think it was from the sickness and the diet mixed but I didn't gain any weight. Naturopathic madicine does work too! Go to www.eatingalive.com or just goggle eatingalive. Trust me. But it does take a lot of disapline. Im now on 10ml starting on sunday and every week lowering it I should be off of it by the end of Jan. Let me tell you it does play with your head but be strong keep yourselve busy reading, praying, walking, talking to friends and family keep yourself surrounded by positive things and try to relax. Warm baths help and lots of camimile tea, oh if you can start eating organic, I ask God everyday to help me through this and he has. Just Believe and put your trust in him too! He's is there and will always be there with you don't ever forget that. Hopfully this helps someone. let me know. I'll be praying for all of you out there.
Was diagnosed with Eosonophilia Pneumonia over two years ago and was put on high doses of Prednisone. Immediately my symptoms went away but as soon as I would drop below 60mg the symptoms reappeared. After a few months the moon face appeared and I began to look like someone I didn't even know. The alternative to stopping the Prednisone was to stop breathing so it was not an option. Have spent the last two plus years trying to achieve a dosage where I could still function. Today I am at 5 mg and will stay at this level IF I can manage to keep my lungs functioning. This is the first time I have managed to get to this level (lowest was 15mg) so am at a major milestone. Am hoping that I am as lucky as others to lose the moon face and the change in personality. Can you give me an idea of how long it may take for me to see a difference. Oh, by the way, I didn't lose any weight, but managed to stay at the same weight when starting the treatment so that is one good thing. However, in order to do so was just slightly above starvation. Take care and keep the faith!!
I have had 2 organ transplants. After my first one 7 years ago, I was on a high dose of prednisone. I gained about 20 lbs and had the moon face until I went down to a maintenance dose of 5 mg. Even on 10 mg, I had the moon face.
I just had my second organ transplant last month and was once again put on a high dose. After 2 weeks, I got the moon face, and have gained about 10 lbs in the past month. My dose is already weaned down to 20 mg, but I know I'll have all the horrible side effects until I get down to 5 mg again.
I have been irritable, had little sleep (even with ambien), and our grocery bill has doubled!
Yes, it is definitely a love/hate relationship with this drug. It is a lifesaver, but is also hell for it's side effects.
I hope you all had a happy new year!! The last time I wrote on here i was on 221/2 mg of pred now down to 8mg about a week ago. I have managed to lose about 3lbs out of the 36lbs that i gained while on this drug the past 15months. It seems like this is NEVER going to come off i have been exercising every night trying to walk/run at least 45min. I really want this weight off.. or at least some of it by spring does anyone have any suggestions on how to get it off? Thank you so much.
I am not 'taking' prednisone but have now had 2 'facet block' injections in my back for severe back pain after two back surgeries (third surgery isn't an option for at least a couple of years). I went to a general medicine physician yesterday because of this extremely fat face and neck and when he walked in the room, he immediately diagnosed me with the dreaded 'moon face' (my friend told me I look like a pelican...nice). The posts have helped immensely in helping me understand I'm not the only person dealing with this. I also noticed how hairy I have become but didn't realize until reading all of your comments that it is related. I'm scheduled for the third round of shots for tomorrow but I'm thinking I really need to talk to that doctor about the risks/benefits (I'm sure he'll know the situation the minute he sees me...unfortunately). I also have mood swings, depression, etc. I'll let everyone know how it goes with the doctor.
im sixteen and heres my story. i was hospitalized with strep three times when i got misdiagnosed the third time and then they found out i had mono. i am on prednisone (60mg) and slowly tappering down. i know you probably dont want to hear someone who is only sixteen speak but i know how you feel. at least you dont have to be in high school and having everyone ask you "whats wrong with your face," think of it that way. and im only on 7mg now but i do know how you feel. im on cytoxan (chemo therapy) and a bunch of other stuff. this is all because i was diagnosed with PAN (Polyarteritus Nodosa) which 3 in 1 million people get and most commonly in men of ages 40-60. i was very active and i cant dance anymore. i love dance. i started when i was two and to hear someone say you cant it just tears you down. but when i got to 40mg then 50mg i noticed my face was going down (a little, alittle) but not quite there yet. i hope it goes away as do you or did you. i have to get lupron shots too. i honestly know how you feel. im depressed. and like i said only 16 years old. i mean im probably the most outgoing person you will ever meet but keeping a positive attitude will hlelp you, even if its not from your friends, you have to tell yourself over and over again YOU WILL GET BETTER. it is so hard and all i ever wanted was to just see the day im off my steroids. i hate them. i mean im pretty but not anymore. everyone says i look fine but in my head i know i dont because i dont look normal. i wanted to meet or talk to someone that was going through the same thing i was. i know for a fact that i WILL NOT FIND ANYONE who is 16 and on more medication that three adults put together. i hope i can get better. yes your face will get smaller and smaller and when it does and people notice it too y ou appreciate what you have more now. its just the best feeling in the world to have everyone notice your face is going down and that you arent abnormally face-shaped. let me know if this helped. get well as for myself. :)
I have been on prednisone since August 6, 2008 and I have been going through pure hell since I started the preds I started on 60mg per day for ITP and iam now down to 2.5 mg per day doctor is trying to taper me off but while on them I quickly gained a moon face and maybe about 4 pounds but my doctor reduced the 60mg within two weeks of me taking them to 40mg so my moon face and weight gain did nt get a chance to happen but I have been severly depressed and crying all the time and very self conscience that the steroids was making me look as if I were severly sick and I would avoid being around people due to my low self esteem from the steroids I think I also suffered from a bout of paranoia because I began to have weird symptoms not associated with ITP such as facial and oral pain in which I began going to numerous oral surgeons and ents looking for an answer to a problem they said did not exist but it feels as though as im tapering im beginning to feel better but I just hope that my ITP remains under control.
P.S GOD bless us all who are suffering with Illness and have to take meds to live.
i have the moon face too and was hoping that i could find a cure for this.. its SOOO annoying. i have broken out with acne that i never had before, now im starting to grow facial hair too i look like freakin shreks sister. i lost weight because of crohns disease so i have to be on the preds although it is supressing my immune system i recently woke up and couldnt walk because the preds lowered my electrolytes. my face just keeps getting bigger and i look VERY unporportional. does anyone know what mg of preds will the moon face and complete bitchyness stops. i used to never lash out at people and now i find out myself being extremely short tempered and ready to rip someones head off. and if someone says one more thing about my face being fat and broken out i might freak out on them haha. does anyone have any tips on how to deal with a. moon face b. acne c. anxiety d. cramping in feet, calfs, knees, and total mooood swings?? preds suckk!!
im so glad i only have 5 more weeks on it. it will be 6 months of taking it before i get to come off completely. ive gained weight, 25 puonds and used to be 118 and a very active dancer and yes ive been depressed but honestly writing about it helps. i used to hate writing but i became good at it because i really did put emotions in it. i. e. crying while writing and listening to sad songs. i know kinda stupid but when you are done crying you feel that you released a whole bunch of weight that was brought upon you and now its gone. you can talk to me. i know im only sixteen but when i look at pictures i used to be pretty but its amazing and really glad to hear that after 6 months go by that people start to notice your face is going down. i hate it. i havent broken out at all but they did say that was a side effect. im extremely lucky. i miss how i look. i miss being pretty and being healthy skinny. i know exactly what you are dealing with. the mood swings i hate them. i NEVEr have problems with them except when i started taking pred. i honestly hate it so much. positive attitude is key though. and there gets a point to where you think why am i still here or were only humans and then you get over what you look like, what other people think and your face goes down and you look in the morror and arent so down on yourself as you were 6 months ago. im soooo outgoing that when this happened i was paranoid and still am. i used to love having so many friends, and now all i think of is how they talk behind my back on how i looko. never let anyone demean you! ive now taken that to heart becvause its true. never let anyone make you feel down on yourself because you know you are better than that. talk to me! im a good listener! the mood swings stopped when i hit 10mg. the weight came off (not competely) at about 10mg. my face started going away at about 40mg. but i definately would have to say 10mg is the magic dosage of prednisone that makes eveything seem so much easier.
to everyone including myself: GET WELL AND TALK TO ME. IM HERE FOR ANYONE! ha a 16 year old saying that but im mature about this and actually know how you feel.
im 23 and have had rhuematoid arthritis since i was 9, i had a hipfusion when i was 20, and i have been in a preetyy good remission for a couple of years, but since the first of jan i have had bad flareups and my doctor put me on prednesoine, which ive been on before, but usually for only 2 weeks. ive know been on it over a month and when i try to come of it, my hands and feet sweel so bad that i cant close or bend my hands...not to mention that i have obtained the famous "moon face" and it really stresses me out...ive been eating more and even when im not hungary..is this normal...ive been reADing all the posts and just wondering if anyone could give me some advie...is there anything i can do to get rid of the moonface, or something to help with it at least???
Wow...reading these postings made me feel not alone. I have been on ~40mg for about 10 months for a rare autoimmune disease. I am also on Imuran (Azathioprine). I have been able to taper over the past few months. I taper 2.5mg everyother day for 2 weeks (40mg then 37.5, then 40, then 37.5 etc). I have been so depressed, I miss being pretty. I now have gained 20 lbs, have acne (always had clear skin before), hair growth on my arms and face and fat face...mostly chubby cheeks. People have asked me if I'm pregnant or if I've had dental work done. I used to not be able to sleep at night and I couldn't drink alcohol because I got the worst reflux. However, there is HOPE. I am now at only 6 mg! At about 10 mg I started finally sleeping through the night and I could also have a few drinks. I am now taking my Pantoloc (stomach acid reducer) only every second day instead of daily. I still have chubby cheeks and acne...I really want to know when this will go away? Will I ever be back to my old self??
I found this site to remind myself that the moonface associated with prednisone will go away. I'm 22 years old with UC, for which I take Asacol. I also take Azathioprine like TiffRich! I'm wondering why so many younger people are getting diagnosed with these types of diseases. Anyway, this is only my third round with Prednisone--I think I've taken it one cycle per year since I was diagnosed, two or three months at a time. Acne is a minor problem. I used to get mood swings but I learned to monitor myself and control them, actually. The most depressing thing is the moonface, but at the end of the day I will take the moonface over the flare ups 100 to 1.
In my experience the moonface HAS gone down, although not until a couple of weeks after I'm completely off of the drug. I use the moonface as extra motivation for getting to the gym and working out. I think things like "They'll all see when I quit these darn steroids. I'm going to look great." Honestly, I eat everything in sight when I'm on prednisone; but I try to only keep healthy foods around the house so that when I constantly snack it's not just junk food. I definitely gain a lot of weight all over, but mostly in my stomach/lower torso area and hips and thighs. The middle of the body. To feel better about myself I lift weights very frequently so at least I'm gaining muscle as well as fat. When I start tapering down the fat goes away, along with the moonface, and there is only muscle left!
It's all one big trade-off. Take the good with the bad and try to squeeze the most good out of your current state. Keep improving yourself in all of the ways that you know how and when your dose is lowered or tapered off completely you will feel like a new person!
If I had to give some advice it would just be to remember the alternatives to prednisone. I'm grateful that this drug can send me into remission for a while and end the chronic pain.
Lastly, let me thank everyone here for sharing their stories and keeping the faith. It helps a lot to hear from people who have similar situations and similar feelings. Thank you all for posting!
Here is my story short and simple - I was diagnosised with a very rare condition called Idiopathic Transverse Myletis - this diagnosis in it self was horrific because no one knew what I had. Went from doctor to doctor - e.r. to e.r. - anyway finally found a neurologist who (still thinks) I have MS and that was the cause of the TM. She put me on 60 mg of prednisone then all the way up to 100mg then 500mg of solumedral (I think that is how u spell it) then back to 100 mg prednisone then tapered down to 5mg then off. SOoooo you all know what kind of ride I had. My face is an absolute mess .... Could anyone shed some light as to how long it will take before my face is clear of this acne / rash whatever the heck it is it hurts and it so ugly.!!!! Please someone give me hope!!!! Thanks K
Well this site has made me very happy because I now don't feel so alone. I am a twelve year old girl with a disease called " mixed connective tissue disease". I was diagnosed about 4 months ago and since that time have been on prednisone and plaquenil. I started out on 60mg and have been tapering little by little. I am now on 30mg and hope to keep going down. But for girls around my age or for shreksister and the sixteen year old, I do know how you feel. I was out of school for three months and have now just gone back. I have had some bad days and am definitely tired of everyone asking what happened to my face. I feel depressed and am sad I can't do my normal things anymore. Just the other day at school, I was sitting in the lunch room when I saw these 4 boys staring at me. For a second I thought they were maybe looking at something behind me, but soon figured out they were looking at me when they started making puffy cheek faces and laughing. I just ignored them but after getting home from school it really did get to me and I have cried. Its normal I know, to get depressed, but I do try to stay positive and just keep walking and staying active because I know it will help my face and stomach go down. SO HANG IN THERE ALL YOU PREDNISONE TAKERS!
Can anyone help? I have had Crohn's disease for 15 years now which has been managed via steroids, azathioprine and surgery. I have recently had a flare up of my condition and my consultant has just put me on 20mg dose of steroids. The problem I have is that I am due to get married in 18 days and I'm concerned that I will have a moon face for my wedding day which would be a disaster. I know in the past when I have been on a dose of 60mg I get a serious moon face but I'm not sure what side effects I will get from a 20mg dose. Can anyone advise whether I am likely to get a moon face when only taking 20mg of steroids for 18 days??!! I've got visions of walking down the isle with a fat back and moon face. Please help.
To all those who think you'll lose your moon face,well don't be so sure. I've been off steroids since 19th March 2008 and I still have slight cheeks. Everyone says I look fine BUT I KNOW what I looked like before and I'm not happy with the way my face is now.
Im even looking into acupuncture or something as it's fat stored on the face which is not budging...it's been over 1 year now and my face is not oval like it used to be.
Sorry to be brutal but dont be like me and just wait for day you can look in the mirror and see your old face - it may never happen.
I am 15 but i have been on prednisone for a disorder called ITP ( bleeding disorder).....I was on it for 9 months. It has only been like 3 weeks since I stopped pred but the moonface is still there. But of cause, its much better than what it used to be. My face used to look like a bloated balloon. Prednisone has almost ruined my whole life..the only gud thing it did was to safe my life which I know is nt really called ruining sum'1 life...Bt if I had to take pred for my whole life and live with its terrible side effects....it certainly is a dangerous drugs. I used to be a school badminton player but know i cant even play some simple games because of the muscle weakness. Of cos, I got the damn moonface too which really horrified me wen I saw myself in the mirror. Everyone kept asking wat was wrong with my face and I didnt know what to say. I tried telling them it was because of the steroids but some of them thought that I had actually put on weight and they also thought that i was GIVING EXCUSES WHEN I WAS ONLY TELLING TRUTH!!! I hope I will never take PRED again!!!
I am 29 yrs old and have Graves Disease. I had been on Prednisone since November 08, anywhere from 80mg to 5mg. In December I was on 1000mg of Solumedral for three days. I had horrible leg and hip pain and could hardly walk from the IV treatment. And if I was on more than 40mg of prednisone - I could not walk or stand for that matter. Anyone else have that? The moon face started in January. So along with swollen bulging eyes I had chubby checks, chin and neck. Also have acne now as well. The hair growth on my face started in about February, and that has been very embarrassing! I have now been completely off of the Prednisone for 5 weeks and my moon face is almost gone! My ophthalmologist said it could be 6-12 months before the moon face goes away, but my family doctor said 6-10 weeks. Last week my ophthalmologist wanted me back on a high dose of Prednisone as my eyes are slightly worse, but ! have refused to go back on it. I feel as if I can think more clearly now - because the Prednisone also put me in a 'foggy state'. I am also taking Methotrexate (chemo), started in January, which causes loss of appetite so that has helped for the weight loss. I have lost almost 10lbs in 5 weeks (20 more to go!!). Does anyone know if the facial hair growth goes away? Or does it end up as a permenant thing?
Just remember that there is a light at the end of taking this 'bittersweet' drug!
I have had lupus for 6 years now and have never been in remission, hence i have never been lower than 20mg a day. As a result i have gained sooo much weight. When i was diagnosed i weighed just over 8 stone and now i am just over 11. As everyone else i have this love hate relationship with the mediz and know that i can't live without them. I also have a moon face that is so hidious as everyon can't recognise me!
Furthermore with the pred i get so many vravings esp for sweet food and this i know is my down hill. But the problem that i face is that i want to loose the weight but don't have the will power to stop eating. Moreover i can't do exercise because my joints are a pain. I get swelling in the knee and ankle joints which is v painful if i over do it.
Thanks again it was nice to know that im not alone !
hi ,i am 21 years old and i have been on prednisone for 8 months now. i have the horrible side affect of this moonface, i hate everyday looking at the mirror and looking at this different person, it makes me worse as all the people i know comment on the puffyness of my cheeks and how different i look from say the year before, i have fallen depressed know were i dont want to talk to anyone and feel i would just rather be on my own i have mood swings, i have gained weight and to be honest i just want to stop these tablets all together but i now the great dangers in this and i understand at the end of the day they doing the job there meant to and making me better, but how can i start to feel better. i just want to feel happy again and get rid of this moonface.
I have had 4 back surgeries. 3 of them were minor, laminectomies, and the last one was this past February for a spinal fusion. I have been put on a series of Prednisone 3 times. I have gained a total of 30 lbs., 10 with each series of Prednisone. It has been 2 years since my last series. I still have the moon face and can't shed the weight, even if I only eat 1 time a day. I think it may have affected me more since I am older, 47 now. I can't exercise a lot due to the back pain. I will walk around the block 1/2 mile and then I am in bed for 2 days. It is really frustrating! I knew I would be older one day and maybe have to deal with some things, but I never counted on this! I am praying and really trying to stay positive and count my blessings. Doing things for other people helps alot! I was told my my doctors assistant to drink a lot of water. For several months I drank water all day long. I kept the weight. When I went back, they told me that I had gained hard weight instead of water weight and it would be much harder to get rid of. I am trying to go to school and also trying to get my disability. I hope to draw it just long enough to get through school. Anyway, life it tough. It takes a lot of prayer and toughness to get through it!
Sorry. I forgot. I have the acne too. I have been going to a dermatologist and it helps some. My insurance will cancel as of the end of this month, so that is over with. Thankfully, he gave me some extra meds to take for awhile, so I will have help for a little while.
OK. It's me again. I was reading more of the posts and thought of something else. It absolutely did mess up my menstrual period. I was also having them every 2 1/2 weeks. that was miserable! It is beginning to get regular again although I am still having some problems with it. Anyway, I thought I would give you all the "heads up." After finding out I was having weight problems, my docs assistant asked me, "Didn't they tell you not to eat any starches while you were on the steriods?" "NO!" I wish they had of! Now I know. Anyway, try cutting way back on the starches and see if that helps. She implied there was some way the starches act with the steriod that causes the problems. I have been cutting back on mine but she said it needed to be done WHILE you are taking them, not afterward!
For anyone who is offended by faith, don't read the rest of this post. For everyone else, I have a friend who had a severe case of fibromyalgia. The nerves in the top of her back and neck were permanently damaged. They said she would never walk on her own again. She had to use a cain and a walker. They told her it wouldn't be long and she wouldn't even be able to do that. She had the church pray for her and annoint her with oil. The first thing she noticed was that she began to be able to walk again. Then she started going to the YMCA and swimming. It was the least impact exercise she could do. Then she started walking and she was very meticulous about her diet. You wouldn't believe she is the same woman now! She runs, exercises regularly, keeps her diet, and she doesn't even look like the same woman! She has lost all of the excess weight from the steriods and the moon face! She looks great and is living great! She has told her doctor she will be the first one they have that goes into remission! I do believe the faith and prayer is what put her on the road to recovery! She had to have healing first to be able to walk and exercise. After that, she did what she felt she had to do towards doing all she can to be healed. She took responsibility for her actions. The Bible says when you have done all you can to stand, stand therefore. She did all she could, now she stands in faith believing she is going into remission! The difference is amazing! I wish you all could see her now! If I can get a video of her I will post it somewhere! Do all you can, then stand in faith!
alright, so i've been on prednisone for about.. a month now? i was hospitalized because the night after my high shcool graduation my legs became extremely weak & it was impossible for me to walk on my own (i was diagnosed with ADEM). when i was released from the hospital, i think i was on 40mg of prednisone a day (i'm slowly being tapered down to none), & now i've just begun 5mg a day.
i have a bad case of acne (it's not as bad as it was before), a moonface, & this lovely collection of fat around my abdomen that makes me look 3 months pregnant (it's gone down since i've been on a lower dosage). i'm 17 years old, & this moonface is really no fun. i'd have to say it's the worst part. i was hoping when i got to the lower doses, the moonface would gradually disappear, but i haven't noticed any change. some friends have told me i look completely different because of my face -_- i really hope this goes away soon!! my birthday is in less than a week & i was hoping i would be able to do something other than staying couped up in my house (that's all i've felt like doing thanks to my new appearance).
i'm also suffering from the mood swings. usually, i'm a very positive, upbeat person, but lately i've felt depressed, & i find i'm easily irritated by the littlest things.
oh! & at the beginning, i suffered from insomnia. i'm usually an extremely heavy sleeper & i can sleep for 8-12 hours straight. on the higher doses i took at home (& in the hospital), i slept lightly (& woke up frequently) for 5-6 hours. but after about a week, i was back to my normal sleep pattern. i must've been on 35mg when it was normal again. they've been tapering me down by 5mg a week, but recently i had 10 mg for 2 days, & now it's 5mg for another week. my last week i'll be on 5mg every other day, & then i'll stop. i guess that would answer anyone's question if they were wondering if they should go cold turkey. i would advise you not to do that. they're tapering me down slowly for a reason.
Just joining in...I have been on Prednisone for almost 9 years now. Shortly after the birth of my daughter, I developed RA, and then was dx w/Lupus, after getting pleuresy, and then pancreatitis the following year (although, I'm wondering if that was a side effect from one of the meds they had me on...a Med Student caught that one! So much for smart internists...sometimes it helps to have a fresh mind look over everything w/different eyes!)
I'm a Registered Nurse, and this has been tough for me, as I'm used to being the one in control. I've learned that this has been truly a lession (for me, anyway) in empathy, and to be happy with the simple joys in life...like your health!
AS FOR THE MOON FACE...it *****!
I love the energy, and the FINALLY FEELING NORMAL!
We all feel sick and tired, of being sick and tired!
But at SUCH A PRICE!
At first, I think I tried to wean off too fast, and then tried completely, which failed miserably, and ended up getting sick again...
Then to make matters worse, they told me that my adrenal glands had COMPLETELY SHUT DOWN FROM THE PREDNISONE use, and that I would be on it for the rest of my life...
I took too much prednisone, and now as a result, I have to be on it???
For the rest of my LIFE???
Tapering is a word I'm beginning to loath!
But then once I was able to get down to below the "magical 10mg", everyone started asking me what kind of diet or excercise plan I was on! I told them, it was the "not eating, being depressed a lot, and tapering off prednisone diet"...They weren't thrilled as they couldn't achieve this kind of success...AH Well...At least we have a weight loss program, as well...not the greatest choice of one, but HEY, It seemed like it worked for JFK...I mean look how great he looked! (and I hear he had significant Addison's disease, leading to weight loss, and darkening of the skin...which is essentially adrenal failure, right!)
Okay, so the side effects of depression, increased pain,etc., kind of ruin it for marketing, but there are MUCH WORSE side effects out there, RIGHT! (We've all heard the ads...Seen the Saturday Night Live commercials, right!?!)
I guess, I really believe, after years of hearing people's stories, that you really are what you eat, and what you believe, and sometimes you have to "fake it, til you make it"...
At least when I'm tapering off, I forget to eat, and if I can keep myself busy, and finally found a method of excercise that works for ME...
It REALLY depends on what works for EACH INDIVIDUAL PERSON.
I know that sounds corny, but what works for one, may not work for another...even w/medications and even w/family members! (eg. I take a med that my father reacted terribly to, and I tried a med for depression, that my mom takes and loves, and I felt HORRIBLE on it)
I COMPLETELY agree with those who say to taper slowly,...it's not worth the back pedalling if you get sick again, doing it too fast.
Has anyone out there found any "not totally uncool" looking Med-Alert tags/bracelets, that aren't like $500-1000?
I'm thinking of going into business making some, as I'm not wearing one, and should be, but they're just so "butt-ugly" and make me feel old!
It's bad enough to feel fat, but the old part is something, I think, you can change; somewhat at least...You're only as old as you feel/dress???
Does that make sense???
hi. im 15 and have been on pred for about 2 months now for crohns disease. i started at 40mg and tapered down. i am now on 5mg and my moon face seems to be a bit smaller but not that much. i absolutely HATE THIS MOON FACE!!!!!!!! it is probably the worst thing i have to deal with in my life. i dont wanna go out and its summer..i wanna go out so bad but im so embarrased by my puffy fat face ;( IS THERE ANY TEENAGER SAY AROUND 15 YEARS OF AGE WHO CAN TELL ME HOW LONG IT WILL TAKE FOR THIS MOON FACE TO GO AWAY?? i start school in 1 month and i really cant bear the thought of having to go back to school looking like this. PLEASE CAN SOMEONE HELP ME?
God Bless all the moon face sufferers. I know how you feel. ;/
Hi there, I have a daughter your age, but I'm the one that has experienced what you have with prednisone. It doesn't matter what age you are, it affects us all. And I find that each time I'm on it for any length, I tolerate it less. I find that it can take even a couple of months for all of that to go away. So, I'm afraid you will just have to have lots of patience :-) But it does go away. Don't worry. I just recently spent some time on it...and yup, I wasn't too keen on wearing my summer clothes at first. But now I'm off for a month and a half and looking much better. take care.
I JUST SPENT HALF AN HOUR READING ALL OF THE POSTS. IT MAKES ME REALIZE THAT I AM NOT ALONE AND WE ARE ALL WARRIORS. WE ARE FIGHTERS. EVEN IF WE ROLL INTO A BALL AND CRY EVERY ONCE IN A WHILE, WE STILL COME OUT FIGHTING. EACH OF YOU HAS EMPOWERED AND ENCOURAGED ME, CUZ I WAS ON THE VERGE OF A PITY PARTY MYSELF. IVE BEEN ON PREDNISONE FOR 15 YEARS AND HAVE HAD TO HAVE BOTH OF MY HIPE REPLACED BECAUSE OF IT. IM SURE MY ADRENAL GLANDS HAVE SHUT DOWN TOO, BUT IM NOT READY TO HEAR THAT YET. :)
ANYWAY, I JUST WANTED TO SAY THANKS TO ALL OF YOU FOR YOUR COMMENTS, GOD BLESS YOU ALL AND KEEP ON FIGHTING!!!!!
My heart goes out to all of you in your struggles. Two thoughts, which I hope will help:
1. Tea, apples, and zucchini are natural duretics. Adding more of all three to my daily diet and cutting out the diet drinks gave me a little (very little) relief from the discomfort and appearance of the moon face this week. You might give it a try. I'd love to hear other suggestions about managing this side effect.
2. CARE band wristbands come in several colors and are affordable, and they store electronic copies of whatever medical info you want on there. My husband wears his backwards so it looks more like one of those bright "cause" bracelets than a medic-alert. They also come in a key tag. Last time he went to the ER that info was a Godsend - ER staff loved being able to pull everything up stat. http://emteam.com/CAREMemoryBand.html
I was started on a 5 day course of prednisone, 20 mg twice a day, no taper for some unknown inflammatory arthritis in 3 joints. Worked great. No problems with cessation. However after about 10 days, the arthritis started coming back so I thought I would nip it in the bud and started with the prednisone 20 mg, twice a day. Amazing. No pain at all. I felt human. My heel and ankle that I had fractured 20 years ago didn't bother me anymore. I had sprained my collarbone during this time and that stopped hurting. The tennis elbow I have on both sides stopped hurting. My knee with the torn meniscus stopped bothering me. It's a great drug. Too bad about the side effects. So I had only been on it for 5 days again and stopped. This time all the pain came back times 10. I had the headache from hell. I was miserable. So I popped 20 mg of prednisone and started feeling better by the end of the day. I went to see my Rheumatologist and he started me on Methotrexate and told me to continue with the prednisone but at a dose of 10 mg/day for two weeks then down to 7.5 mg/day for 6 weeks and to see how that works. Well, going from 40 mg/day to 10 mg has not caused any withdrawal. I did that for 2 days and have cut back to 5mg/day with no ill-effects yet. My plan is to take myself completely off the prednisone even if I hurt and save it for flares. My Dr. thinks I have some weird sub-type of RA. I wish I knew which one. Hope the MTX helps. I can't take NSAIDS because they give me ulcers. BTW, the side effect I have is puffy eyes with bags. I look like I haven't slept in a year. I have been treating my eyes as if I had allergies. Cold tea bags work. I also press the the bagginess under my eyes with my fingers and that seems to help. I do that on my eyelids too. Lotion stored in the fridge helps. I have been taking furosemide (Lasix) for idiopathic edema. It doesn't seem to be helping with my puffy my eyes even though it did before the prednisone. I just want to get back to normal.
I have been diagnosed with Polymalgia Rhuematica. I have been on prednisone for a month. Started with 20 mg and tapering down every two weeks to 15 mg to 12.5 mg the 10 mg. I still have pain in my right wrist and it goes away later in the day. Does anyone have this disease?
I was diagnosed with systemic rheumatoid arthritis at six years old and spent over ten years of my life on various large doses of Prednisone, instead of tapering me off of the medicine my parents and my doctors just cut it out completely when I started showing immunities to it. I am twenty three years old now and in remission with the terrible weight gain and moon face that the steriods left me with, what's worse is I am in a wheelchair and therefore cannot get up and walk or run as specified in a normal excersise regimen, I don't eat much at all, I drink plenty of water but it never goes away no matter what I do. At this point I am rather desperate as for what to do to make it go away, any advice would be much appreciated. You can contact me at ***@**** and I will also try to check back here as often as possible.
I have been off and on prednisone for over 45 years. There is not a single organ in my body that hasn't been effected by the drug. It is the worst drug but it does keep me functioning . I would have not been able to have a life dealing with Crohn's disease had it not been for prednisone. The side effects of bloat, moon face and facial hair disappear slowly over time. These are not the ones that bother me. It is the psychological effects which I find impossible to deal with. The Euphoria, Mania and Depression. I believe that many doctors do not discuss this with their patients. If any of you are suffering these side effects you should see a psychiatrist that is well versed in pharmacology. They can provide you with drugs which will help counter act these side effects. What can we do, we need the drug but have to learn how to cope with the side effects.
Just sharing my story with prednisone. I developed cataracts in both my eyes at the 12th month of being on prednisone. I had started at 40 mg and was tapering at a slow rate. I was only on 2.5 mg of prednisone for 2 weeks and was about to stop it in the following week when I developed cataracts. Is there really a safe zone for prednisone? I dont think so. The sooner you are off of it the better for you. Not many Drs. discuss the side effects with us but I strong feel they should.
I got diagnosed with myasthenia gravis, and ive been on prednisone for 2 months and the moon face is the only side effect im struggling with right now, everyday it feels like my face is getting bigger and everyone looks shock when they see me, my doctor told me he would taper it down for another month, im just wondering if my face will stop getting bigger even my meds are still of the same dose? My body is unproportional with my face and i hate it
hello. I was diagnosed with ITP, blood clotting disorder (auto immune disease) 5 months ago. I just turned 23, and a mom to a 13 month old baby. It has been quite a battle taking care of someone else on this crazy drug and to having no time for myself. As all the younger ppl wish, I WISH I GOT THIS LATER ON IN MY LIFE NOT NOW. To all the teenagers on this drug: It will only make you stronger, keep your head strong!! Age DOES matter, and i CANT imagine going through high school on this drug. We are dealing with a unique trial. It seems like everyone on here is suffering from the nasty side effect from this crazy but life saving drug. I wish that there was an alternative drug, or a method that treats us so we dont have to go through this!
I have already had one short term prednisone treatment but my disease relapsed. Now i have been on 100mlg prednisone and slowly have been tapering off the dose for the past 2 months.. I have 2 more wks to go. I had to quit my job because the sideffects got so bad.
I used to have a beautiful face, now its moon shaped, chubby and not very attractive. My muscle tone has gone to zero, and i gained a little weight. I know looks arent everything and all, but your face does represent you. Doesnt the moonface effect us ALL??!! Its hard enough to deal with all our sicknesses, and it makes it even more difficult with this moonface. Im just counting down the days till i am off the drug and back to my normal self again.
I read all the posts on here. It feels good to know that there are ppl who understand this crazy drug that keeps us all alive. This IS a fight, we are all fighting a battle. I feel so alone at times. The moon face effects me every day as i look in the mirror, as i rest my face on the pillow, as I wash my face. I cannot wait to get by face back.
Never heard of it before I was diagnosed, but apparently it is quite common in my age 66, gender F and ethnic group WASP. Then wiki research and sore scalp led me to temporal arteritis as well, and a biopsy. 20 mg of prednisone was not enough to stop from waking in the night with head and shoulder pain, so I'm now at 30, 15 after breakfast, 15 after supper. Am round faced anyway, but now have two big newly-fuzzy cheeks to support on my hands as I sit here. Don't suffer much from mood swings, but hot flashes!!! Holy crow! Back after years of suppression by minimal doses of Estrogel. All my sleeveless and low cut tops have come out of storage to pair with slacks topped by winter shirts to stop me from catching a chill. Am a Weight Watcher... 2lb from recapturing my Lifetime again after a 5 year lapse and a 3 month vigil to succeed. Now I want to eat everything not nailed down. Currently 1% yogurt, drained of whey and topped with brown sugar, is my craving. Perhaps it is only a psychological response to my fear of osteoporosis from the prednisone, but it sure tastes grand. Dr says she will start to taper me next month, but since temporal arteritis is more problematic, she does not want to go too fast. Also in Canada, the lowest tablet is 5mg, so I'm hoping to stock up on some 1mg tablets in Florida in Feb, because chopping up these little pills the size of lentils will be an adventure.
I had a kidney transplant more than a month ago. I was taking 30 mg of pred and developed quite the moon face. I am on 10 now and will start taking 7.5 mg soon. I will have to remain at 7.5 mg for a long time- nearly 6 months. Will I have a moon face while taking 7.5 mg? Will there be light puffiness or will it totally go away at that dose?
I started on prednisone 5 months ago for minimal change disease (nephrotic syndrome). My nephrologist started me on 60mg, and within a month tapered me to 40mg. I stayed on 40mg for another few months and developed the dreaded moon face. It was very obvious - I even had someone tell me they could tell I was on prednisone. I'm now on month 5, and am on 10mg. I'm happy to say that the moon face is almost gone! I noticed that at 15mg, the puffy face went down by about half, and I would say now on 10mg, it's about 1/4 as puffy as it was when I was on 40mg. It will go away, keep up hope :)
Thanks for sharing your experience. A yr prior to my kidney transplant, I was put on 60 mg of pred until it was tapered down to 10 mg before the transplant surgery. At 10 mg, my moon face significantly subsided - almost to 1/4th as you said. However, it was still considerable puffy and I didnt look the way it did before i started pred.
The thing is I might have to remain at 7.5 mg forever. I guess my question to everyone out there is, will the moon face tottaly go away at this dose or will some puffiness remain? If so, i guess i have to be prepared for my face to be little bit puffy for the rest of my life and not be able to look the way i did before.
I would strongly recommend that you abandon the "medical management" option for treatment of Graves in favor of surgery. I had a subtotal thyroidectomy 35 years ago (at age 17) after two years of attempts to control the disease with propylthiouracil, tapazole and inderal, which were unsuccessful and caused significant side effects. Two weeks after surgery, I felt like a different person. Of course, I have been taking synthroid ever since, but with only minor dosage "tweaks" and without any problems. Yes, any surgery carries risks; but juggling those very powerful medications is, in my opinion, not a healthy alternative. Radioactive iodine is another permanent "cure" for hyperthyroidism, but carries with it risks that my parents found concerning at the time. Remember, this was 35 years ago.
Hey,im 22 yrs old and i was diagnosed with wegeners granulomatosis when i was 14,i got a kindey transplant when i was 15 as my kidneys failed from the disease.In the last two months i have had a relapse of the disease causing some damage tgo the transplanted kidney,so for the past 7 yrs i ve been on 5mg prednisone on alternate days,so therefore i had no side affects,but in the past 2 months ive been on 30mg of prednisone everyday and my face is so puffy and moon shaped again like it was when i was 14 and first diagnosed with the disease.this week alone i put on 5lbs!!i cant believe it and im so annoyed cos i lost 28lbs early on in the year and now its all coming back :-( Ive been out of work now for 2 months and the doctors are talkin about me going back after christmas which is only like 2 weeks away.Im so depressed about the thoughts of all my colleagues seeing me the way i am now,i know that everyone will look at my face and be disgusted,i LOVE goin out with my friends but now i couldnt even bare the thoughts of goin to a pub or a club.And my poor boyfriend,im so grateful to him for sticking by me and telling me how beautiful he thinks i am even though i must look so different to him.I really dont wanna put on anymore weight but i seem to be just eating everything around me,tons of cakes and chocolate,thats my main cravings!usually i do have a good appetite but now im ust like a garbage disposal with all the rubbish i sit in every nite in front of the tv eating,and i wouldnt even be hungry!!I cant seem to find the motivation to eat less and move more
i'm currently taking prednisone 60mg a day for mysenthis gravis. which the dr. isn't sure if that's what i really have btw.
i was on 40mg a day for 2 weeks then dr. increased my dosage to 60mg a day. i've been on steroids for 6 weeks total now and my face is starting to swell up and have bad acne =/ and of course the weight gain
I was diagnosed with arthritis when i was 3 years old.. and now i'm nearly 18. ive been on pred for the past 9 years. it's been great for my joints but the moon face has been the worst side effect. it used to get better when my doses came down but now im on 10mg and it will not go away. I don't want to come off the drug as i feel it's keeping me well but i also hate this face.
How are we people?.. well if your on Prednisone im guessing not the greatest. Anyway i was diagnosed with sle (lupus kidney problems in my case) about 6 months ago and have been on Prednisone since. I started on 75 mg and ive gone through the long brutal slow weaning off process. Im an 18 year old male and ive had my year 12 completely screwed over. Not to mention the relationship with my gf friends and family. But one thing im sure of is all our Pred stories and life changing times would have to be experienced to be believed and understood. This drug really does effect your brain chemistry, to the way we think about everything.Whats even worse is you lay there knowing this isnt 'you' and knowing what really is 'you'. But as long as your above 10 mg things are hard to control. Then theres moon face.... i mean jeez laweez on top of everything we are going through allready do we really need a moon face to completely change our appearance..and not in a good way..ive noticed withmoon face it doesnt just add weight (and plenty) to your face, but it also changes you eye shape and identity. For example i had a friend in primary school and didnt see him for years, when i next did he put on alot of weight in his face, but the difference with him is its still very easy to identify him. But then look at us Pred takers, i mean after being on this drug for a month or so we are different people and its not fair lmao. It screws up your confidence completely and all you want to do isstay in your room all day..other then the other half day in the kitchen eating. Apparently 7.5 mg really hits the moon face hard and makes you look alot more normal..after the 10ish days of feeling sick after weaning down of course. Anyways i could yack on about 1000 more bad side effects but ive done my dash and covered to worst 2 from my opinion. Ketch yas later
Hi all, I m really thankfful to all of ur's comments on this site. I m diagnosied with mysthenia Gravis ten years ago and I m taking prednisone from about 9 years. Before visiting this site I have so many questions and concerns about my moon face appearance. But now I got a new life I feel I m not the only one who is suffering from this. Right now I m taking 10 mg prednisone and now from today I m going to 7 mg and hopfully It will works for me. One thing I would like to mentioned that since begning I m trying my best to control the Prednisone doze. I use to make changes in my doze according to my body needs and beleive me it works. Sometimes we can make better decision about our body needs than a doctor bec, we can understand ourselves better way. Right now I m doing half hour air climber workout almost daily and taking a healty food according to Canadian food guide. I lost 10 pounds and still I feel energetic. Only one problem I have my left eye is effected with MG. I developed the Lazy Eye problem and to resolve this I m using eye patch. If anybody can help me to resovle this problem it will be great helpful.
I have just finished a course of back injections for Degenerative Disc Disease (L4, L5, S1). A total of 15 in all starting at the end of October '09 and the last one was Jan 28th. 80 mg of Methylprednisolone each of the eight visits. I didn't notice the moonface until I saw pictures of myself from a party the other night...WOW...I was shocked....I think it came on gradually so I didn't notice it....I am soooo hungry too...I am a nurse and work 12 hour shifts. Yesterday I worked and packed a small cooler with health food to last the day...LOL...by noon I had eaten everything...oh well at least it was healthy....unfortunately by the time I came home at 8pm I was famished and ate anything I could get my hands on...I was about 20lbs over weight to begin with and really haven't gained more than about 5 lbs...The good news is I am 55 years old and have more energy than I have had in years and I sleep so much better (maybe because the back is better) I am done now with the injections...that was the limit for I think 6 months...I will keep you posted on what happens next...
My moon face came with bag under the eye and eye twitching...It is from hormone replacement cream. I got scared and stop using the cream for over a month now...But my moon face is still there. How long does it take to go away. I have been using the cream for hot flashes and sleepless nights. It really helped alot, but I would rather have no eye twitching and no moon face.
I have been diagnosed with Lupus 2 years ago and have had significant attack to my kidneys. I understand the love/hate relationship with Predenisone and realize one thing.. And reading the above posts, I thought it worth mentioning. We put this time pressure on ourselves of WHEN is the moon face, etc going to go away. This pressure is unneccesary and an added stress that doesn't help our healing. It is what it is and will last as long as it needs to.. Having said that, there are a few things to realize..
The moon face is a side effect of a medication that is essentially saving our lives. Focus on the posititve-when you take your dose of Prednisone, don't regard it negatively. Thank it, thank God, thank whatever you believe in, for the healing that Prednisone is providing. Then focus only on the positive-keep a picture of yourself from your "healthy" days beside your bed so it is the first and last thing you see everyday as a constant reminder that when the Prednisone has healed what ails you, you will return to that same person you were.
I watched "The Secret" very early on in my diagnosis--surprisingly I watched it at a time I really hated the world and was angry that God chose this to happen to me. Well after I watched it and understood the Law of Attraction and the energy I put out is the energy I get back, things started to change and I healed in significant ways.
I also realize healing NEVER occurs simply on the physical level. That's why you hear so much about the mind/body/spirit balance. Follow your doctors orders and your own intuition (you know your body best) but don't forget about the other 2/3 that need to be nurtured--the mind and the spirit. Meditation, long walks, exercise, visualizations, prayer--all this helps calm the body so it can relax.
Here is one last thing I will leave you with- I wake up and thank God for at least 10 things I am grateful for that day. Then I repeat a mantra to myself several times a day: "I believe without a shadow of a doubt that my body has the capacity to heal completely and permanently from Lupus and I ask it to do so in a safe, gentle and natural manner."
I learned from watching "The Secret" that life is meant to be abundant and the body is meant to heal. As soon as we take the stresses off our body (on a physical, emotional and spiritual level) it does what it is naturally programmed to do. And taking the stress off us about when all the side effects of prednisone will go away is going to be a huge start..
If you are reading this, you have the Internet. Go to www.youtube.com and enter the search words "The Secret". You can start watching clips of it today.
I pray that all of you find the strength you need to overcome this temporary health crisis in your life.. Believe in your heart you will heal and then focus on nothing but the positive. It works. I assure you. And have patience. We have been given an obstacle and it is your choice if you choose to fall over the obstacle and stay down... or if you choose to learn to fly, you will. And flying is much more gratifying. Make a choice today and don't look back.
Hi dear, I really like ur comment and i m 100 percent agree with ur advice. Before that I was so depress about my appearance and was a complaing person why I have MG? But now I learned to leave with my prednisone and MG bec. Prednisone give me life and help me to live like a normal person. I remember the days when I was unable to walk and stairs are a big phobia. Now I can do all my work normally nobody can say I m sick. I m thank ful to GOD who give me everything which we need for a happy life except Mysthenia Gravis. I like ur secrets and will soon watch the secret. Take care.
I just turned 18 in Dec.I was diagnosed with Ulcerative Colitis January 28, 2010. I was sick since Nov of 08'. They had a really hard time finding what was wrong with me. I didn't have the normal symptoms for it. If my mom wouldn't have demanded the doctors to do a hysterectomy they would have never found it. I've been taking Prednisone for a few weeks now and I have moon face bad. I was also a really over weight girl before I got sick. After I did develop this disease I lost over 60 pounds. I'm so scared that I will gain a bunch of weight back. I'm already swollen I look pregnant. I don't know what to do. I'm having a really rough time coping with this. My appetite has gotten huge. I can't stop eating. I'm really depressed. I cry at least twice a day. Is there anything that could make the swelling go down? I just need someone to talk to. Thanks a bunch.
I feel like a total idiot! For 8 months I have been taking prednisone. Some days are good, most are bad. My moon face is the worst. I cry for dumb reasons and I snap at my loved ones. I had a bad two days so I turn to the web for answers. Of corse my Dr told me what to expect but no one really understands till it happens to them. All these stories, real people going through what I am. I am not alone and for some reason that gives me comfort and hope. I have a wonderful husband who tells me Im beautiful everyday.My children show me so much love and attention. I have MG. Im in a situational irony but I have all of you to keep me going strong! Moon face or not life will go on for me and I m tired of feeling sorry for myself.I hope tomarrow is a beautiful day for everyone.
I am taking 60mg a day of Prednisone for Thyroid Eye Disease. I had RAI two weeks ago for Graves' disease. I've been on the steroids for three weeks and looked in the mirror two days ago and notice the moon face. I normally have a long narrow face and it looks pretty round now. I'm supposed to stay on them for 2-3months. I hope this is the worst of the moon face. I think I'll call my Dr and see if I could lower the dose to 40mg. As far as mood goes, I feel pretty normal. My appetite was already increased because of the Graves' and I still want to eat all the time. I haven't gain any weight yet. Hopefully I can keep it off.
I found your comments very uplifting thank you all I have ha asthme for 55 years recovery from the attatched bronchitios has taken longer as Ive got older always assisted with peds, last year 2009 I ocntracted an ear infection that led to severe pewmonia (bad speller) since october 09 Ive been on 40mg peds tappering the off in dec within two weeks my breathing worsened, therfore I restarted the 40mg now its nearlt April 2010 and I have totally off them, but I stil have terrible breathing difficulity, a very big moon face and a waight gain of 3 stone I feel as if I could just die, I dont want to go out (cant walk) all I want to do is sleep husband is tearing his hair out. my doctor said (after I had asked if there was anything he could do) "stay off the steriods" I hobbled away and straight to bed, my eyes are so swollen I can hardley open them I am shaking and nausoios he said this was steriod withdrawal -thanks, I am going to retire as cant see that I am going to recover well enough or quick enough no I cant afford to, I'll need to sell my car and forget holidays I couldnt enjoy them anyway, I 2009 I was gragairious, active working hard and loving life, now will somone shoot me and end this hell I look like a freak fat and walk like a granny, cant get up the stairs cant make love, I just want to give up help Sue
...you gotta just accept them and make the best goddamn lemonade you can.
Change your lifestyle, adapt, change. Commit yourself to making the best of what you have and good things will happen. Drink a lot of water and incorporate it into your daily routine. Limit your sodium and sugar intake drastically, and substitute the snack food for vegetables and fruits. Portion your food properly before you eat it to avoid over-eating. With a good measure of self-discipline you can overcome the burning desire to eat something every second. Additionally, fatigue seems to make the moonface "flare up" so be sure to get enough sleep.
Be proactive. Do something about your situation. The shape of my face changed from a thinner oval to round and you know what I did? I looked up hairstyles that compliment a rounded face.
I'm 19 and someone who has always struggled with self-image. After being diagnosed with Takayasu's Arteritis, my life changed drastically. I had a challenge in front of me, and I vowed to buckle down and fight it. Prednisone is saving my life. My sedimentation rate went from 137 to 8. And the 'moonface' is slowly teaching me that appearances aren't everything, and those people that truly matter in your life will see beyond the new look.
It takes a vast amount of strength and courage to go through what we're going through now. But you don't have to fight your battles alone. Personally, I'm a pretty independent person and I usually dislike relying on others, but at times when the burden gets too overwhelming you need to talk. Don't keep it all in.
Be happy. Be grateful. Smile, laugh, enjoy life. Don't let your appearance take everything away from you. Claim it back.
My name is Lori I am almost 47 years old. Sue, I am so sorry that you have suffered so much. If you are suffering severe withdrawal from prednisone did he put you back on them at all or want to?
Please don't give up. I have felt that way too with my condition (unknown vasculitus ) and the steroid thing. I too look unrecognizable and can't walk very well now either and use cane, gained 23 lbs and can't do the same things I used to and I have only been on this almost 4 months. I was on 40 then 60, then 40, then 30, 20, now at 15, hope to get off this soon!
I will pray for you it breaks my heart to hear how you are suffering so much.
To others did anyone have problems with esphogus on this stuff? I thought it was the meds i was on (I was on 6 antibiotics yuk!), But now maybe wondering if the prednisone causes this.
I have been embarrassed to go places too but you know what? We are still the same human being inside as we were before (minues the mood swings hehe) and we need to hold our heads up high and realize not be ashamed of ourselves and go on with our lives the best that we can. God loves us just the way we are and so we should love our selves too. You are all precious people! I am praying that God would heal every single one of you of all your diseases. And in the meantime give you the courage and strength to go on with your life in the best way you can and I know some days that means being in bed all day.
I was just wondering how long it takes till the moon face shows up and how high a dose you need to be on. I'm going to be taking 60 mgs for 4 days and tapering down from that at the same time increments. NO ONE HAS BEEN ABLE TO ANSWER ME AND I REALLY WANT TO KNOW.
I am a seventeen year old girl and I have an autoimmune disease that caused kidney failure in Nov 09. I had to go on high dose prednisone, chemotherapy and hemodialysis. Now I do nightly peritoneal dialysis. The worst part about my disease (vasculitis) was losing my hair and getting the moonface. My friends have been incredibly supportive, but its really hard sometimes when I look at old pictures and think of what I used to look like. I just tapered to 10 mg of prednisone this week and I feel like my face is shrinking, But I worry that my face will never look the same...is it going to shrink much more after the next few weeks? I have my high school grad in a month and I was hoping I would look normal in my pictures...and any other girls near my age if you have an auto immune disease it would be really nice to connect with you, sometimes I feel like the only person in the world with this disease!
I have been on Prednisone for like almost a month or over and my face has become swollen...I dislike it cuz I can't even look in the mirror and do my hair without getting upset...it kinda changed the way how i look in the morning and now my stomach is bloated as well and Im gaining weight like crazy....I keep eating for no reason and when Im full I still keep eating...I gained more weight then I thought and my mom keeps telling me that its because of the steroids...I dont believe that...but Im gonna have to lose weight though...
I just wanted to write about a positive experience with prednisone. I was concerned about the weight gain and moon face as well... it was worrisome because it took me 6 months and a lot of work to lose 15 pounds. I was careful of the sodium intake (what an eye opener!) and kept moving. I'm now in the tapering off phase after three weeks starting at 40mg and have only gained a couple pounds all together.. mostly due lack of self control.
the best part of this experience was the way the pain subsided. what a feeling of freedom! I'm not sure if this will last, or if I have to go back on prednisone later, but for now I am grateful.
I want to share my experience with prednizone. I m taking this for 10 years when I was 20 years old. In the begning I did the same mistake and keep on eating alot and gain weight and satisfy myself that it is bec. of prednizone. But dear I was wrong. Now I understand and realized it is on up to us how we take it and manage ourselves with this medicine. U have to be conscious for ur weight and calories Intake. Change ur eating habbits than u will gain a very little or even u can loose ur weight too by regular excercise. Change ur thinking and become a positive and active. control ur self and live a happy life.
Is there any way at all to keep steroidal weight off!!?... i am 15 and its my 3rd time going in steroids... last year i was on a high dose of 40 mg for 12 weeks and then came slowly off them and the had to go straight back on them for another 8 weeks. I look back on photos and i actually look so terrible!! all my friends said i look like a chipmunk!... i am now going into my 4th week of 40 mg and i havent gained much weight so far, but am starting to notice my face getting that little bit rounder!.. and you all know that at 15 us girls like to look our best, I just want to know how i could even keep a little bit of weight off to buy me some time with my looks, the funny thing is i was happy with the way i looked and now the stupid steroids have to go and muck everything up!... though i suppose it is better to feel better on steroids and look a little funny than to be sick and miserable and look ok... if anyone has any tips i would just love the help!!! thankyou xx
I am 37 and have been dealing with skin and joint related issues due to Leukocytoclastic Vasculitis for 6 years, which has had me on several high courses of Prednisone. In addition to the LV (which has also affected my kidneys) I have Lupus and Celiac Sprue, and it seems that I can't get them all under control without the Prednisone. In the past I haven't noticed too many of the reported side effects from the steroids, but this past course shot me up to 100mg with a 3 day/10mg taper. My face and neck are so swollen that I feel as though my eyes are nose are being engulfed. I've put on some weight in the past with Pred (of course!) and have had a puffy face, but this is my first severe case of moon face. I know from past useage that the swelling and weight gain will go away over time, but that is either after I come off the Pred or maintain at 10mg.
Over the past few years I have had skin biopsies and every test imaginable to figure out why my LV and Lupus reactions are so severe. I have been on Plaquenil, Quinacrine, a host of allergy meds, steroids, and on and on, but the only thing that has worked was Prednisone. About 6 months ago the Pred stopped controlling my hives and my symptoms were worse than ever. We even started Methotrexate (chemo) because we were so desperate to get my symptoms into remission. I recently had a bioenergetic screening done and was told that I have Lyme and Bartonella in my system, both of which could be triggering my autoimmune flares. I have started the Cowden's Condensed Protocol for Lyme treatment and my hives and skin issues IMMEDIATELY went away. Understand that I was covered in hives every day for over 5 months with no relief until I stated this program. Even the Pred had stopped helping. I am in no way affiliated with or trying to market this product, I am just a woman who has been struggling with a cure for her health issues and wanted to share my experience and what has finally brought me some relief! I am starting month 2 of the 6 month protocol and even my Rheumatologist is amazed by the results of these homeopathic meds vs. all of the chemical drugs that we've tried. My joints feel great and I'm able to go back to the gym again. I'm a fitness freak, so I've missed my intense workouts! Now I just have to lose the 60 lbs that I gained from the Pred... :-)
To those struggling, please keep searching for answers. Autoimmune diseases are scary and unpredictable, but I refuse to sit back and let them control my life. My fat face and I will keep pushing through and enjoying every day :)
Chowders, I hope you had/have a wonderful graduation!!! Best wishes!!!!
Kato510 and FrankieD,
What you wrote about predisone has given me such hope I could HUG you! I am giving up all junk fast food. I won't feel deprived because to achieve what Kato and Frankie did will be my reward.
I was started on 120 mg 5 days ago.... for 2 days now on 80 mg...will be on 60 soon. I am so anxious about the side effects but if I am strict- drink 2 - 3 liters of water, on a low fat, no sugar diet (except fruits, right?), no extra sodium, eat more potassium rich veg & fruit, work out 5 days a week.... I can possibly even reduce the 15 lbs and maybe gain muscle?
Just wanted to say thanks to everyone for their comments, it's helped me as I know that I am not the only one going through this hell. I have been seriously ill for 8 years. I have an autoimmune disease which causes my immune system to attack various organs in my body. It's currently attacking my eyes and this was causing me to go blind. Steroids are helping the eyes - all good but my god the side effects are hideous. I seem to be on massive doses compared to everyone else - 500mg (yes five hundred - not a typo) - I have to have this injected or else I'd be forever popping pills! They also have to monitor my heart and blood pressure while I'm being given them as it's such a high dose. I hate the puffy face, the fat, the hair on my face - does this ever go away??? I've been told not that I'll have to pay to have it removed by laser treatment - the depression is worse, I just want to die...I've had enough. It's totally knocked my confidence; I can't go out anymore or see people I know because I am too ashamed of the way I look. I can't bare to look at me so why should other people? I'm doing my shopping online because I don't want to see anyone I know or in fact stangers to see how hideous I've become. It's a living hell.
Hello there - also got the moonface, although we (partner and I) call it spoonface, as that sounds somehow...nicer.
Female, DX with minimal change / nephrotic syndrome at 38, with no history. Consultant thinks a sore throat caused it. (Full story here: http://www.flickr.com/photos/vicg/4695453355/)
60mg of prednisone to start, currently on 50mg.
Mercifully few side-effects so far, and they seem to change daily too, but include: occasional racing heart, feeling buzzy and jittery, insomnia (3-4 hours sleep on average). The most obvious one is the fat face and neck - and it feels twice as large as it actually is. It's like those teenage spots that felt the size of Mount Vesuvius all over again.
I'm watching my diet, and also, doing face exercises - really simple ones like tipping my head back and saying A E I O U in an over-exaggerated way, for a minute or two. It seems to help - and moreover, it feels like I'm actually doing something. This chap scares me slightly, but, there are more exercises to try on his site: http://www.shapeyourface.com/
Good luck everyone, and here's to our future good health :)
My mother is on predisone due to having ITP she was at 100mg in the hospital then 90,60,40,20,10, and now 5mg. She experienced the moon shaped face and is not happy. I noticed a day ago she came home from work and her face was flushed and her cheeks were very warm. she has been gettng nasal drip and she thinks she may have a sinius infection and is very tired. She thinks she may have an infection in her mouth? Did u get anything like this? when did the doctor take you off? How is you ITP now? How is your platelet count since you have been off the predisone? I'm asking all these questions caused im concered about her.
I have been on prednisone for a month;; although, I have had many experience with this medicine before. I have had my face puffy for a few times and it always gets better. Still, this time I am on it, my moon face that I hate came. This morning, on top of the large cheeks, I swear my lips are huge and ugly. I am wondering if I can put on a huge sunglasses and still can hide my ugly face. It is depressing EVERYTIME. I am an emotional person by nature, and a woman, and an artist. That makes me super emotional. And the prednisone? My hubby just won't understand why I am angry and bitchy time by time. He never will. "Why are crying (AGAIN), now what's wrong? Honey, your disease is getting better, everything else is fine. All the side effects you're worried WILL go away!" Honey, just leave it alone, and let me cry. I told you it's the medicine, not you or anything else that you're trying to fix will make it go away. So frustrating and depressing. Hope for every one else, even though, I go through this many times, it is still a stingy bite, but it will. I can't tell you any specific time, but because it works gradually, "before you know it" is the only time I can give you as hope. I have learned that pictures tell it honestly. I compare picture and I can tell how puffy or unpuffy I got! Best of luck to all
I am 24 years old, and I never had a bowel problem before..however..recently i'v been diagnosed with ulcerative colitis. I have been prescribed prednisone (40 mg) and asacol (800 mg).. I have not started the drug yet..honestly because I am hearing such bad things about it that it is just freaking me out..especially the talk of the (moon face) does everyone that takes prednisone experience this for the most part? Does it really help with everything? Should I just suck it up and start taking them??
My mother developed "moon face" while on prednisone but she had an allergic reaction to the drug. I do know it helps a lot of people but be careful and talk to your Dr about side effects, you never know.
I'm a 24year old women who was on Pred. for 2mths for Autoimmune Hemolytic Anemia. I started out with 100mg a week and tapered down every 20mg every week until I was finally on 10mg for a week. My side effects included, anxiety attacks, mood swings, hot flashes (especially at night), insomnia, "moonface", thinning of hair, facial hair,and joint pain on my knees. I have been off of the med. for about a week and my face is now barely going down a bit. I feel like a slug, with no energy and also hairy in the face. I'm still very emotional about this whole process, it's very depressing. Only positive thing about this whole experience, is that I'm healthy again well at least for now.
I am an 18 year old male and I was diagnosed with Ulcerative Colitis almost a year ago(when I was 17). I have been hospitalized over 5 times in the past year. I always had severe abdominal pain which puzzled doctors as it was more severe than UC pain, yup i have pancreatitis too. I have been put on Prednisone so many times starting from hydrocortisone in the IV and being sent home starting with 40mg of pred and tapering. symptoms come back(they usually bloody diahhrea, some nausea and all that UC stuff). I have had a fever for 2 weeks at one point with severe headache and abdominal pain. at like 15ish- 10. MOONFACE.... BIGGER THAN A WALRUS, feeling depressed, not being able to eat many of my favorite foods for months...
The thing is, I felt lonely, like I was going through this alone but reading this forum helped me. There are many who are much worse off than me. We will make it through this. Steroids might be ruining our life but they saved us in the first place.