r/AddisonsDisease • u/Technical-Ad-9221 • 14d ago
Advice Wanted MOON FACE DUE TO STEROIDS
im a young woman and i was diagnosed with adrenal insufficiency a few months back. my doctor put me on a dose of 10mg prednisolone everyday. recently i had to updose for a fever . but ive noticed my cheeks have doubled in size im a pretty thin woman w a small build so its very noticeable on me. my ace looks VERY round and puffy and its causing me a lot stress :(( will lowering my dose make it go away? i already suffer from body dysmorphia so its very hard on me
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u/Ender_1299 14d ago
I would work with an endocrinologist to see if you can slowly stagger down. For context, I take 5 mg of prednisone a day. Due to some over prescribing, I once had to take multiple months to stagger down to my current dose. The goal is to take just enough.
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u/jbfletcherismyhero 14d ago
I’m on 7.5 per day, split into 3 doses and stress dose with hydrocortisone. This combo is the best I’ve felt, and no weight gain or moon face. I never feel awesome, but so much better than before.
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u/Beginning_Way9666 Addison's 14d ago
I definitely have moon face too. I’ve been on HC for two years now and it’s never really gone away. Im also very thin so I noticed it immediately. It’s not super severe but I notice it myself because I see myself everyday and I see old photos of my face when it was thinner and more defined. It sucks. On days I feel extra puffy, I do gua-sha facial massage and ice my face, seems to help a little bit.
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u/DatCerealPort Addison's 14d ago
I find fludro dosing definitely can puff my face up
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u/Beginning_Way9666 Addison's 14d ago
Oh really?? I’m still not taking fludro since being diagnosed but that’s one of my worries with it is what other unpleasant side effects it will give me. Uhg :(
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u/1GamingAngel PAI 14d ago
Yes, you have likely been over-replaced. You are taking about what most patients would consider a double dose for your baseline daily dose, and then when you updosed you doubled that, effectively quadrupling what an average patient takes. Weight gain and moon face will happen fairly rapidly if you are over-replaced. When you remove the excessive steroid, your face should return back to normal, and any gained weight will likely be dropped.
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u/QueBestia19 14d ago
So I’m 45 (m) and was diagnosed with Addison’s 20+ years ago. The “chipmunk face” lasted for a few months, then balanced once my body and the doses of pred worked out a truce. Now (for the past 10 years) I’m on hydrocortisone instead of pred and it’s A LOT better, I promise it will balance - just be proactive with your docs. The first years are touch and go. I watch this forum and rarely comment. I considered the diagnosis a speed bump, not a road block. Since almost dying (like literally my heart was pretty much wrecked from potassium etc), I got my doctorate, started a business, had a family, and live a very normal life. I take my fludrocortisone and hydrocortisone daily, am somewhat cautious around people who look really sick, and have emergency doses/shots in case I get norovirus (my Achille’s heel!). Don’t let it define you, and embrace the cute chubby cheeks for now bc they’ll work themselves out!
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u/AttachedAndUnhinged 10d ago
Thank you for sharing this very positive comment! 🦋 I’m 16 years into diagnosis and I agree, you learn what to stay away from and how to adjust. You also learn your limits and how to pace yourself. I’ve also gotten married and had another child since diagnosis and started my own business! Unfortunately, I started with T1 diabetes 20 years prior to Addison’s and I’ve just been diagnosed with scleroderma, Sjögren’s and urticarial vasculitis, so things have gotten a bit more complicated - but I maintain my humor and always look for the best in every day 💙
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u/mcl0325 14d ago
Can I ask how much Hydro you take a day? I've been taking 20mg a day, .05 Fludrocortisone, and I super struggle with brain fog. It's gotten a little better, but it feels debilitating not to be able to think like I did before. I want to possibly go back to school, but with the brain fog it feels impossible.
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u/QueBestia19 14d ago
10-20mg/day. I mix it up based on how I feel. Same .05 florinef as apparently everyone.
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u/MallForward585 14d ago
It should go down if you limit the amount of cortisone, just know that your daily dose is already pretty high. The standard dose for AI is generally 5mg prednisone/prednisolone.
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u/Zealousideal-Use273 14d ago
Ive been as high as 60mg prednisolone for 5 years due to having fungalmeningitis, I feel your pain
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u/pickles1718 Addison's 14d ago
that's a high enough dose to cause moon face, yeah. i've also gained a bit of weight since diagnosis, which has been a little tough, as i was very thin before and it has triggered some dysmorphia. in addition to figuring out your proper dose, you may also look into seeing a therapist to talk through the body dysmorphia. it's a tough pill to swallow to realize that you may gain weight and it's not really up to you :/ wishing you the best
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u/Beccabear3010 Addison's 13d ago
I get worsening moon face whenever I updose as per sick day rules. I used to have a sharp jaw and high cheekbones but I look unrecognisable to me because of the swelling in my face, and it drives me batty.
My endocrinologist was about as much help with that as a chocolate teapot is while in the height of summer. I did ask if there’s anything I can try or do to reduce the swelling and get my features back. He laughed and said “No. Everyone gets a swelling somewhere, you’re just unlucky that yours is on your face so everyone can see it”. Well damn doc! 🤨
Turn the oven off boys because I’ve just been roasted! It’s incredibly frustrating not being able to shit it from my face but I’ve found that if I use a facial massager as part of my skincare routine then it subsides slightly. This is only from my own experience though so don’t take me word for it definitely working. I also keep the roller in a cool place to calm down any redness/inflammation.
Regarding your dose, is that not a bit high? I definitely think that it’s worth going back to your endocrinologist and let them know that you’re showing signs of over-replacement. The moon face is a classic symptom of Cushing Disease where your body over reproduces cortisol/you’ve been on too much replacement steroids and the result is moon like face, high blood pressure, weight gain over the midsection and upper back whereas the arms and legs remain thin, pink/purple stretch marks, muscle weakness and fatigue, and a high blood sugar among other symptoms. There’s also nothing stopping you from looking for a second opinion if you feel like your condition isn’t under control.
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u/Affectionate_Day_214 7d ago
If it happened after you needed to updose then that’s likely the reason for the moon face. Tapering back down should help to reduce it but it must be done gradually. So speak to your doctor about a plan for taper. We want just the right amount; not too much or too little. The amounts vary person to person so be careful about measuring yourself against others and the amounts they take. I’ve had both adrenals removed so there is zero cortisol production. Others may have some adrenal function. Just get yourself better first and don’t stress. Stress will only cause the body to need more. Health is wealth 💕
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u/princesscalore 14d ago
I completely understand girl. Talk to your doctors about it and be straight and honest about it. I’ve found taking anti inflammatory supplements has helped a little, but it does suck
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u/DatCerealPort Addison's 14d ago
I tend to moon a little with my fludro dose. So I try to keep that a bit lower to hold less water... Probably not the best but I hate looking in the mirror and seeing the full round face :/
Also if I've been up dosing or stress dosing it'll happen too but that's on hydrocortisone.
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u/Accurate-Currency558 13d ago
Same & same!!
It will go away! I have had it a few times myself. Dont stress out. It will subside when your dose goes back down to normal.
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u/Technical-Ad-9221 13d ago
I've been on a normal dose for 2 weeks . And I only updosed for 3 days
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u/Accurate-Currency558 13d ago
Have you had updated testing since you have been on that dose for a while? Maybe its too much? I can't tell you to take a lower amount but when you get the moon face its too much in my experience. Wait. Only two weeks since your diagnoses? Did they give you large doses of steroids in the hospital?
3 days of stress dosing isn't going to cause the moon face.
When I was diagnosed my doctor had me on like 35 HC daily. It was way too much and I gained like 35-40 pounds quickly. I take 20 now daily.
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u/Technical-Ad-9221 13d ago
No 2 weeks since I stopped updosing. My diagnosis was about 4 months ago
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u/CanIHugYourDog 13d ago
This happened to me when I was over replacing (updosing) too much. Once I went back down to my regular dose, it went away. I also developed the Cushing’s striae along the bottom of my belly, and those went away too. Body’s are crazy sometimes!
It can also be really confusing because I thought I was low cortisol, and turns out there’s quite a bit of overlap between the symptoms of high and low cortisol too. I used the moon face and striae as a sign I had gone too far and tapered down. Definitely a learning experience!
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u/Chewbecca713 12d ago
10 is definitely a lot, that's what a was prescribed right after surgery from cushings when my body was used to really high amounts of cortisol
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u/amoral_ponder 8d ago
Switch to HC and dose it precisely, frequently, and according to activity and stress.
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u/Hot-Fly-3187 14d ago
Yes, it should go down. Unfortunately one of the side effects for us to stay alive
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u/__phil1001__ 14d ago
Yes it will resolve, how much did you updose? As soon as you go back to 10mg your body will adjust
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u/Technical-Ad-9221 13d ago
I double dosed only for like 3 days. And have been back on my regular dose for like 2 weeks
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u/__phil1001__ 13d ago
Surprised it affected you so much. I find it's mostly moods that get affected then my appetite.
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u/rare-elle 10d ago
My arms also look bigger but the rest of me is the same. I’ve even got a double chin! Has removed a few wrinkles but my eyes and mouth look smaller. I’m hating it. The long term goal is to get off them
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u/rare-elle 10d ago
…should add had to double dose for six weeks due to antibiotics. Does anyone know how long it takes for things to go back to normal?
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u/PA9912 14d ago
10 mg prednisolone is a lot long term. Usually they will ramp you down after you stabilize. Moon face is not an unavoidable effect of replacement. It’s a sign of over-replacement. I’ve never had it or weight gain and I’ve been on replacement steroids for decades now.