HA! How I long for those days!!! Since being on the prednisone I have gained close to twenty pounds. That’s up two dress sizes in two months. I am not here to bitch and moan, although it kind of looks like I am. I would not insult you like that! Many, many people have much worse health problems than I do and more difficult weight issues than I do. It’s not the degree that’s important. It’s that we all have more in common in our pain and discomfort than not. 
On another day I will write about how we reflect on our own story in comparison with other’s, the good and the bad about it, when doing so uplifts us and when it only makes us feel worse. But that’s not for today. Today is for anyone out there who not only struggles with weight, but struggles with weight on medication that tries its hardest to make you pack the pounds. Because how we look does make a difference in our self-esteem. As much as I sincerely love and try to practice the “I love the inner me” message, I also like how I looked and felt in a size 8 pencil skirt. On another day I will write about acceptance. Meaning, there’s been a shitload of ‘nothing I can do about it so I better learn live with it in serenity ’cause getting mad just makes it all worse.’ But that’s not for today, either. Today is meant to inspire us to do what we can to stay in control when the weight-gain undertow is pulling us out to sea. As much as we hate prednisone, we are grateful for it. We take prednisone for the treatment of inflammation, asthma, arthritis of all kinds, inflammatory bowel disease, sarcoidodis, lupus, kidney disease, skin problems, allergies and more. Without it we would be dealing with a heck of a lot more discomfort than extra poundage. But the extra pounds are no joke. They are a pain in the self-esteem and when the weight sky rockets, as it can, adding up to 50-60 pounds overweight and more, well, then the weight itself can cause health problems. Talk about vicious circles! Why does this have to happen? Prednisone creates the perfect storm of weight gain. It comes at you from four fronts: 1. It slows your metabolism and changes how you process glucose. Avoid sugar. Boo! 2. Fluid retention happens. Avoid salt. Boo! 3. Fatty tissue is redistributed to where, I swear to God, it makes you feel as bad as possible: face (moonface), upper back (buffalo hump) and abdomen. Charming! 4. Makes you hungry all the time for anything in your path. Nothing edible is safe in the sites of a prednisone packing mama!
5 Things We Can Do About Weight Gain When Taking Prednisone
What can we do about the weight gain? Here is my plan. So far it’s worked for me. In my heart I know I could have gained a hell of a lot more at this point. I’ve been working hard to just keep the madness down to the occasional Oreo orgy.
1. Start with patient maintenance. This is a most important thing. If your on a high dose of prednisone don’t stress yourself out trying to lose weight. You are taking the stuff because you are sick so pay attention to that. See your doctor, follow directions, take the damn tests, blah, blah, blah… and when you can, pamper yourself. Let others pamper you too.
The best you can do when you are in the higher doses is to keep a food journal just to maintain and keep the habit. Just by writing down what goes into your mouth you subconsciously reduce the amount you eat, even a little. Besides, you will need this habit later when you can and want to lose weight, so may as well start now if you’ve never done it before. Be honest, which can be hard when what you ate in one day could feed a whole colony of hungry hungry hippos.
2. Choose your food thoughtfully. Avoid salt and simple carbs. Embrace fruits and vegetables. Not only are these foods lower calorie tummy fillers, they are packed with antioxidants, nature’s own anti-inflammatory. When my appetite was at its most wicked worst I binged on stuff like French fries, sure, but there were also occasions when I binged on fruit. Weird but true.
3. Exercise. If you can, if your illness allows it, try to move every day. Twenty minutes to half an hour of some kind of exercise will keep your metabolism revved up and keep your muscles from going to mush. I find mixing up activities, from walking, riding my stationary bike, yoga, weight training, keeps me from getting bored. And I’m lucky; my body likes it. You may need to talk with your doctor about this. You may need a physical therapist to recommend a routine. Don’t let this hurdle stop you, though, please. Also don’t do aerobic exercise in the evening. You need your rest.
4. Plan meals, plan snacks, plan mini-meals, whatever your style is – Plan It! The more you plan ahead, and shop accordingly, the less apt you are to succumb to gotcha! eating. Do not have a bag of sea-salted, kettle-fried chips in the cupboard! I do not care how many teenagers are in the house insisting they need this basic food group.
5. Count calories Phase 2. As the dosage is tapered down you will begin to feel more in control of your appetite. Start lowering your calorie budget a little at a time. The app on my iPhone called Lose It! lets me adjust my calorie budget so that I don’t stress myself out restricting my calories beyond what I can realistically manage. My Fitness Pal is another popular program.
The good news is that at the lower doses the insanity of the worst side effects ease their grip. The thing I find the most challenging is to believe that this is temporary. The weight-loss I fought so hard for over the last two years is my permanent, natural place to be. It may take several months, it might be years, but I can’t wait to be whining about those extra five pounds again. What about you? Have you been dealing with the side effects of prednisone? Have you had any success managing your weight on it? Perhaps you have a completely different perspective. Please share your thoughts.
I can sympathize, I felt this way when I took Paxil. I remember waking up at 2 a.m. to eat because I was RAVENOUS. I also know what you mean about the chips…I recently vowed to stop buying fatty snack foods because, if they’re here, I’ll eat them!
Hang in there!
Thank you, Maria! I hope you are doing well these days. I feel badly it’s taken me so long to reply to your comment because I really appreciated it!
Chips of any kind, brownies and ice cream… can’t have them in the house whether I’m on or off the prednisone! 🙂
Does all this weigh gain make you feel bloated and stiff. If I diet during this time, is it possible for the weight to come off or am I stuck with this I am off of the medicine?
Everyone is different. I advise you to ask these questions of your medical professional and/or a qualified registered dietician. I do not know why you feel bloated and stiff. As for the second question, my experience is that weight loss while on significant doses of prednisone is not likely. What is more reasonable is to make every effort to not gain more weight, to maintain the weight gain, pump the breaks on it, through good food choices and continuing exercise if your condition and your medical professional allows.
I look like a chipmunk .all very depressing , but now just started 7.5 mg steroids a day I am hoping the weight gain with diet will start to come off.
Hi, Bev, Keep in mind that the effects of prednisone on your metabolism, even in small doses, will slow down any efforts at weight loss. Be patient and kind with yourself.
Hi, I was on a high dose of pred. For a month and a 1/2 now the wsnt me to come off slowly .5 a month, the less I drop the more water or weigt I retain and gain, I’m not a salt eater I only have sugar in my coffee once in the morning, I have one more month and I’m done , but it seems the more I drop the more I bloat fast. Non of my clothe fit me, none. I’m not a crazy eater , I have the bloat face . My god this drug is terrible. My doctor I shouldn’t gain any wieght. Ha!
Elaine, if I read that right, your doctor said you shouldn’t gain weight?! I don’t know why doctors, good in so many other respects, sometimes basically lie to their patients. It reminds me of the first time I was on prednisone and I freaked completely out when my skin felt like there were ants crawling all over me! It was so terrifying, like being on a bad LSD trip! I called my doctor and he said, “Oh yeah, that can happen on prednisone.” like it was nothing important. Are you freaking kidding me?! OK…now that I have that out of my system…
Please continue to drink lots of water. Ironically, water is a natural diuretic. It literally flushes out your system and it’s zero calories. You are eating reasonably, low/no salt. I would be sure to talk with your doctor about continued weight gain (yes doctor it does happen) as you lower the dosage, just to rule out anything else that could be the cause.
Thank you so much for your article. I was also 135 lbs before prednisone and gained 25 lbs!!! It hurt my self-esteem but the worst is feeling unable to come back to my real “me” for years! I am still fighting and is helpful to know I’m not the only one. Thanks will all my heart. 🙂
I’ve been on prednisone for about 4 years now. Before prednisone I was about 140 lbs(still a bit overweight for my height age). I’ve since gained about 65 lbs now at 205 lbs (I’m only 5’3″ imagine). I look and feel gross. I’ve tried all kinds of diet plans and exercises. One particular issue I have to deal with is limited funds (I’m a grad student right now). So I’m in really annoying situation right now. I am scouring the web to see if anything that helps that won’t cost me an arm and a leg. Only thing I have found that should help is the sugar and sodium thing.
Hi, Maria, So this is what I understand. You are still on prednisone. You’ve been on prednisone for 4 years and in the at time gained 65 pounds. You have limited funds so can’t do anything fancy. When you say “the sugar and sodium thing” I think you mean cutting out as much sugar and sodium from you food as you can. The answer to that would be yes. Cutting down as much sugar and sodium from what you eat and drink as you can will help. I don’t know why you are taking the prednisone. There are some conditions that make us retain water. My kidney disease did that. Sometimes that makes a difference. But reducing fined sugar, complex carbs and extra salts is a healthy thing to do no matter what is going on.
I’m wondering if the the graduate school you are going to has a health center that you can take advantage of where you might be able to talk with a licensed nutritionist, without too much cost, for more personalized advice. And what about the prescribing doctor? Why isn’t he/she should be concerned about the extra weight? That would be my question to him/her.
Yes! I was about 105 pounds and once I started prednisone I gained a lot of weight. I’m now almost 140 pounds and feel worse then ever. Just waiting on the edge of my seat to lower the dosage!
How are things going, Maria? Have you been able to reduce the dosage yet?
Hi I’ve been on pred for 6months and lost 15kg. An egg and spinach for breakfast…chicken & homemade coleslaw with natural yogurt teaspoon humice teaspoon cottage cheese…small handful of nuts & mandarin afternoon snack…dinner half plate vegies 1/4 protein lean small potatoe before 7pm…water no alcohol no soda…no added salt…sugar free except for max 2 serving of fruit and milk in coffee or tea…being able to move walking even if it’s just 10 mins at a time ….best of luck…life is not all about eating it’s about living…doing moving gardening playing with kids or grandchildren if your that age…just realise your not actually hungry because you’ve actually eaten.
Hi, Jo, Your food/drink regimen sounds delicious, highly nutritious and non-toxic in a very reasonable way! Add the moving a bit every day, enjoying the of goodness life has to bring rounds things out beautifully. For some of us fighting that awful prednisone-induced hunger is a constant battle. Congratulations and thank you for sharing.
I’m so annoyed whenever sites and/or doctors say that Prednisone causes weight gain because of the bloating and the increased appetite, but fail to mention the slowed metabolism and the change in how your body metabolizes glucose. It feels like a way of subtly blaming the patient for the weight gain. Like, it’s not that this drug is doing insane, weird things to your body, it’s that you don’t have enough willpower to control your increased appetite! This drug is literally saving my life, so I am also grateful for it, but I have gained nearly 20 lbs since starting Prednisone. My diet is mostly fruits and vegetables and lean meats. I’m not a saint and have also sometimes eaten, like, a slice of pie or some cheese and crackers with wine, etc. I recently started Noom and am tracking my foods and calories on that, and have learned that I am *maintaining* weight on 1050 calories a day!! I’m glad to have started tracking so that I can see just how light I have to eat just in order to not gain. I am lucky that I really haven’t had to deal much with the appetite increase. I had a few days where I didn’t feel any saiety and a period of time where I was binging on fruit, but mostly, my appetite has been manageable. The metabolism slowdown though! Jesus! It helps to know that I can’t really have even one day where I throw caution to the wind and share a plate of nachos with my partner or over indulge one night when eating out with friends. Those days *will* result in weight gain. I’m posting this bc I want others who are also experiencing a metabolism slowdown to know, you are not imagining it! Track your calories and check it out! It’s completely nuts.
I totally agree with you! The metabolic changes is something I point out frequently in my writing about weight and prednisone. It is not “in your head”. You are doing what you can and that is great. Noom is a good program, holistic and science based. Best wishes.
Hi Jo, i am starting with Pred due to a facial paralisis , they gaveme a wooping 60 mg a day for one week… i will follow your path on healthy eating and excersice.. do you think i will still gain weight in this week?
I wish it was so easy for me, the moving. I have myasthenia gravis. I’m just getting to where I can almost go for an almost 30min walk daily without having to pay for it with laying in bed all day. I started a garden that I’m not exactly tending to as I should and wish that I could, I can only move so much (which) isn’t enough. I’ve been on Prednisone 2yrs now total weight gain was 60lbs it was easy with the steroids and basically being a freaking shut in, I know depression had a hand in it as well. I’d have never in a million years have seen myself like this. I do disgust myself. Before this disease and the steroids I ran 3miles every morning before work and would sometimes get an extra workout in the evening. All that seems like ancient history but I’m hopeful that I’ll get my health and body back, that I’ll get off of this damned prednisone. Maybe you’re dosage isn’t as high as alot of us that struggle, IDK but I sure will be happy to get to where you’re at with it
I agree with you, Kareena. In my life with chronic illness I’ve been up and down on the dosage of prednisone. The highest dose I was ever on was 100mg but usually it was around 80 or 60. Then, like so many of us, the doctors would try tapering me off only to have the disease rear back up again, so up the dosage went. There have been some people in this community who have been on higher doses for longer, others shorter, others lower doses for years. This is not a competition. Each of us has a story worth hearing because we find more than a little in each person’s experience to relate to.
I do hope that you have a worthy medical team who is pushes themselves to help you regain more of yourself again. In the mean time, you are doing the damnedest best you can, moving as much as you can. That’s heroic.
Hi Dr. Aletta:
I’m also a physician and so try to keep myself sane by focusing on the why and how prednisone works and the fact that if I didn’t need the drug I wouldn’t be on it. Like Kareena I have faced the satisfaction of weight loss after tapering off the medication only to experience another flare that erases my progress. It is very frustrating. I have now been on prednisone for 3 years with intermittent attempts at tapering for severe asthma. All-in-all I’ve gained 60 pounds and have had multiple complications including DM, HTN, a hip and pelvis fracture and swelling everywhere that sometimes causes bullae on my legs. My skin is so thin that frequently tears off when I remove a band-aid.
I have extreme difficulty with exercise and now am considerably out of shape. I try to pick foods that have a low glycemic index with reduced sodium, but as you mentioned this is very difficult. Complicating this is the fact that I am a pescatarian (of my own choosing) and many soy based protein substitutes are very high in sodium.
Anyway I’m willing to live with my buffalo hump, moon face and pendulous abdomen if it keeps me out of the hospital.
I’m tapering now, but dread the thought of another flare. I mostly wear Men’s clothes because they’re the only things that fit, but I try not to feel bad about it because it’s casual and comfortable. LOL, I too have mountains of “skinny” women’s clothing in sizes 6 through 16 that I really should go through and donate but I keep hoping I’ll lose enough weight to fit into some of them again.
What I really need help with is the nighttime munchies. As with nearly everyone on long-term steroid therapy I have trouble maintaining sleep, and when this happens I inevitably wander to the kitchen in a medication-induced mental fog. That’s when I really blow it and am likely to eat everything in sight. Fortunately as you mentioned previously, I live alone so I am solely responsible for the decision of what food comes into the house.
So, to everyone who has been brave enough to share their stories on this blog, kudos for seeking out an open forum in which to share your experiences with prednisone. You are not alone. You never know what battles others are fighting, and showing empathy can sometimes raise one’s self-esteem measurably by recognizing that you can, on some level, understand when you listen to their stories. Best wishes to everyone!
Dear Cat, Thank you for this. What you say is so true, “You never know what battles others are fighting, and showing empathy can sometimes raise one’s self-esteem measurably by recognizing that you can, on some level, understand when you listen to their stories.” I certainly have gained so much more than I ever imagined by posting these articles about my experience with prednisone. I send many positive thoughts your way for healing and health.
How long after stop taking cortisone tablets will I start losing weight?
Hi, Maria, Prednisone has what is called a long half-life, which means it stays in the tissues of the body for a while even after you’ve stopped taking it. That’s not to say you can’t lose weight. Just please, be patient with yourself and your body. If you are going off the medication that hopefully means you are healthier! I suggest you consult with a licensed nutritionist to develop a good plan for you to lose weight and remain as healthy as you can be.
Thank you Dr Aletta. Ido appreciate your advice & will definitely seek the help of a nutritionist. At first Ovarium Cancer (full historektomie) then a brain tumor (cancer) surgery. Kindest of regards Docter Aletta
Take good care of yourself, Mari. You are in my heart.
I have MG. I took Predinosone for 2 months. My blood sugar was/ is to the roof. I gained weight and I can get rid of it.
Hi, I am 67 years old and have been on Prednisilone for 8 Months for Arteritis which is an inflamed artery in my temple causing terrible headaches! I had an initial 60 mg one off dose, and then down to 30mg a day. I have been slowly reducing and am now just about to drop to mg. I have gained 30 pounds and my belly is huge! I also have a moony fat face and slitty eyes! I used to be a Model and also Flight Attendant. I wonder how long I will be gross for? Plan is to reduce at 1mg every 3 weeks. I call myself hungry Horace as I am ravenous and keep eating too much. I am cranky too and weepy and neurotic, which I wasn’t before the Steroids. Will I lose weight quickly when I stop? Is there a withdrawal period with horrible symptoms? Good luck to everyone as this is horrible but it probably saved my eyesight, this is worth it isn’t it!!!! Thinking of all fellow sufferers. I live in Scottish Highlands and we have a heatwave!! I now have a bright red fat face too!!!! xxxxx Jacqueline
Dear Jacqueline, I will try to answer all your questions. Not saying the answers all be satisfying, but I will give it the best I can.
1. I wonder how long I will be gross for? You are not gross. You are a beautiful woman on prednisone. Calling yourself names is not helpful. Things are bad enough without that.
2. I am cranky too and weepy and neurotic, which I wasn’t before the Steroids So not a question but I’m inclined to point out that all of these “not you” behaviors are known side-effects of prednisone. And yet part of yourself that is still there that is able to observe the neurotic acting out and say, “huh, that’s not me at all!” Despite everything we still have that healthy observing brain!
3. Will I lose weight quickly when I stop? No, not quickly, but the likelihood is, if you follow a reasonable regimen, you will lose the prednisone weight eventually, which is better than never.
4. Is there a withdrawal period with horrible symptoms? Only if you take yourself off the prednisone without medical guidance. Follow your doctor’s prescribed taper off and you should be fine.
This awful/wonderful drug is only worth putting up with because it makes it possible to move again, breathe again, see again. Thank you for your well wishes. I’m sure we all wish you well right back and hope the heat is back to normal summer temps again soon.
I too am of short stature (5’3″) and when I was first diagnosed with Rheumatoid Arthritis I lost 30 pounds in 3 months because I was so fatigued and in so much pain that I couldn’t/didn’t want to do anything. As soon as I started taking prednisone my weight started increasing but wasn’t that noticeable. That was 3 years ago… To this day I have gained the 30 pounds I lost and then some and I am the most uncomfortable I have ever been. I wasn’t in great shape when I first lost the 30 pounds and I was happy that I did lose it but I would have much rather lost it by dieting and exercising and then kept it off!
My RA symptoms are under control now and I have decreased the dosage of prednisone from 5mg two times a day to 2.5mg every 2 days, sometimes I can even go 3.. I have started adding exercise into my routine but only twice a week and I have been eating gluten free for the last 3 months but still haven’t lost any weight.
Do you have any recommendations?
Hi, Lindsay,
I know it’s been a while and I’m sorry I haven’t responded right away. If your situation is still going on please give me an update. For the last two years the dosage of the prednisone I take has gone down then up again and down as my condition gets better and then relapses. As I write this I’ve been prednisone-free for a few weeks (knock on wood!).
This is what I’ve done for the last year:
I engaged the services of a certified nutritionist. Checking in with her now and then, even when I can’t actively lose weight, has been a way of keeping myself honest when it comes to eating as responsibly as I can given the situation. My nutritionist is compassionate and totally understanding of the challenges of maintaining weight on prednisone. She didn’t push me or yell at me if I needed to just chill about the whole thing. In fact she encouraged me not to be so hard on myself.
When the prednisone dose was high and I was too depressed or my energy was limited and I had to prioritize other things like my work and family, I didn’t sweat it. If I really wanted seconds of ice cream I went ahead and let myself have it and enjoy it! When I could resist it I allowed myself to do that too.
When the dose of prednisone got low enough, and I was ready psychologically, I started journaling my food intake. I use an iPhone app, Lose It!, to journal what I eat. I find it very helpful and even kind of fun, like a game. At first I journaled just to journal. Now that I’m ready I journal to keep within a calorie budget that is reasonable for responsible weight loss.
I don’t deprive myself of anything. I understand why people want to go gluten-free and/or lower carbs. If you can do it my hat is off to you. I’m more of a moderation is all things kind of girl, with an emphasis on fruits and vegetables.
With my nutritionist’s and my doctor’s encouragement, I have upped my activity, too. I walk much more, added yoga to the mix with occasional free weight use. This winter was particularly brutal on the activity side of things. I’m looking forward to walking outside more.
So far, after doing this for four weeks, I’ve only lost one pound! That is frustrating but my nutritionist and my husband, who is a microbiologist, say that my body is probably trying to hold onto the extra prednisone fat because it thinks that’s the new normal, my current set point. If I want to lose weight, it could mean many more weeks of sticking to my calorie budget and remaining active despite the lack of encouragement from the scale.
To be honest, even though the scale is a bitch, I do feel better in my body. It’s a small shift, but I can feel it and it feels good.
I hope this is helpful to you.
I see that many of these posts are from a few years back but thought I might be of help to some people. I have RA and been in prednisone for almost 25 years(try to stay under 10mg.) Doctors killed off my thyroid 11 years ago(not a good idea.). I only weigh about 10-12 lbs more than I did when all this first happened but I have no muscle, no strength. So it looks and feels as if I have much more weight on me. Am now around 120lbs. I do try to improve what I eat and have never been a big eater but of course prednisone changed that for awhile. The one thing that has helped in the last year or two is intermittent fasting. I usually do it on the weekdays and take a break on the weekends. Lo k it up on Mercola website to know how it works. That has helped tremendously, I also rarely eat out.
Hi, Wendy, Living with RA takes a great deal of determination and courage. I’m so glad you are doing as well as you are. Muscle mass and strength may be assisted with even a light weight training program. You might want to check that out. Generally, I’m not crazy about fasting. If you have a program that works for you and has been given the green light by your medical professionals (yeah, I can be a broken record about checking in with your doctors) then I’m not going to pass judgement. Avoiding eating out is definitely something I can get behind! For people who must eat out, these days menus are easily found on the web, sometimes with nutritional information! Pick out your restaurant and what you will order before even stepping foot in the building. You will save a gazillion in bad, empty, weight gaining calories.
Thank you for the comments and replies here. I have Scleritis and was on 80 mgs of Prednisone in December 2017. I am now at 17.5. Its time I work on losing the 15 pounds I gained. I’m a LifeTime Weight Watcher So gave that support for better eating. However, they don’t really get that I am hungry all the time. Today, I started back on my journaling and being more mindful. I have heard that under 10 mgs, weight I’d easier to lose? Is that fact-based? Plus, if my eyes flare while I am tapering off Prednisone then I have to go back on a high dose ASAP. I’m looking for a great outcome here!
HI, MaryAnn, About weight lose at lower doses of prednisone you can see what I wrote in response to Penny in this thread. Your eye condition sounds a lot like my kidney condition that is prone to flare ups (relapses) that are random. And a relapse always means getting back on the prednisone which emotionally is a punch in the gut. As I said to Penny, patience, determination and self-love are key to living with chronic illness.
Doing what you can do build a strong foundation of health between and during flare ups is important so that your body in better shape to “bounce back”. In addition to the food journaling and mindful eating (yay!), ask your physician what exercise is OK for you to do and practice good rest and sleep habits in addition to managing your weight. I pray you get the outcome you are looking for!
Occasionally I take Prednisone for migraines. I cut out anything with added sugar and breads. I’m not a big eater so that helps also. I tell myself are you hungry,when did you eat last or is it the medication. So far all that’s helpful for me.
Good. I’m glad. There are new non-steroidal medications available for migraine you might want to ask your neurologist about. I’ve heard good things.
You sound exactly like me. I have PMR which ended up causing GCA. I’ve been on prednisone since Sept. started at 60 mg reduced fairly quickly to 20 mg. Tapering from there. I’m at 6 mg and my weight seems to be going in the wrong direction. I’ve always been Very active as an adult, I exercise at least 5 days a week cardio and weights. I started at 140 jumped to 144 quickly and stayed. Even decreasing I’m gaining. I’m at 152 now. I did incorporate weights into my routine in Dec, but come on, it’s been 2 months now I should be over the initial gain and seeing results now. I also have hashimotos disease so there’s that! I’ve just started a very low carb diet. I think I need to cut dairy as well. Can’t figure out why prednisone is decreasing and weight is increasing… I’m 58 next month 5’5 and my fighting weight was 137. If I get to 140 I’d be shit happy and giddy!
I have a love hate relationship with this drug. Mostly hate!
Hi, Jean, Totally from my experience, even when I was taking low doses of prednisone my weight did not decrease no matter what I did. The best I could do was not gain more weight, but losing what was put on during the higher dose regimen didn’t happen. I was told by my doctors and nutritionists that it was due to the long half life of prednisone. That means that even when I wasn’t taking the drug at all it was still in my tissues and was slowly being released into my metabolism. For me that was just another reason to hate prednisone.
Your activity regimen sounds more than adequate. You incorporate strength (weights) and cardio. Even if your weight is up you are doing wonderful things for your body (and mind) by being active. Please do not doubt that! A higher protein, lower carb diet is also what my nutrition coach recommended to me, so kudos there as well!!!
There are only two things I can recommend to you that you do not mention. 1. If you can, with the blessing of your medical doctor, hire a professional trainer and/or nutritionist. I found out that, while I thought I was working out and eating adequately, I was capable of more, Finding my trainer/nutritionist made a huge difference. A trainer who knows you, knows how to coach you to your best, (which, especially with chronic illness, changes from day to day and is excruciatingly personal) without hurting you, is like gold. 2. If you haven’t yet, begin a mindfulness based practice that has elements of gratitude, easy gentle meditation, and acceptance. Being accepting, even grateful, for what our bodies do for us now, even when in pain, even when ill, even over-weight, isn’t easy. Marianne Williamson, the spiritual writer, suggests praying for the person or thing we believe has betrayed us for about 5 minutes every day for 30 days. I did this when I felt totally angry and betrayed, and many of us with chronic illness feel betrayed by our bodies. It was super hard at first but gradually became easier and ultimately I found a kind of peaceful acceptance. The energy that it took to hate turned into a more loving energy which I could use to take care of myself.
I am on prednisone 4th maintenance dose. Gained 65 and this last summer 17 pounds. In 2011 diagnosed with severe persistent ASTHMA and COPD and sleep apnea on oxygen. In 2011 I weighed 179 now 256 pounds. I cry when i look in mirror or try to do personal hygiene. HELP what happened to the real me.serious multiple health conditions and taking 40 medications!!!!
Dear Nancy, You have every reason to cry. I’m a big advocate of calling it as it is and sometimes it just sucks and that’s honest and healthy to acknowledge. The thing is, if we stay stuck in the suckiness of it all, we risk drifting into depression which is not healthy. Prednisone by itself can cause mood issues. I have no idea what all the other medications you are taking might be doing to your emotional stress. I’m wondering if you can talk with your doctor or nurse practitioner about the whole picture, your overall health and quality of life. Are all 40 meds necessary? How much and what kind of exercise is it OK for you to do? Could you consult with a qualified nutritionist? I also strongly suggest talking with a health psychologist, a professional therapist who understands the intersection between self-esteem and medical realities that are out of our control. Like almost all of us, you could really benefit from talking with someone who gets it.
I have been on prednisone now for 3 months, with a dose as high as 60mg. Right now I am at 40mg. I am doing two things which seem to help me kep from gaining weight. First, I skip a day of prednisone every five days. Second, I am eating low, low carb. If you don’t provide glucose, your body can’t change how it processes glucose. I am on the low carb web-site and others have had good results with this approach. Currently I am trying to keep my carbs less than 10 a day. This is only temporary to persuade my body into ketosis. I lost the 10 lbs. I gained before I started this routine. I try to walk everyday. Once my body has adjusted, I will up my carbs a little each week until I reach a point where my weight is stable. Check out low car friends forum.
Hi, Teri, Does the low carb regimen still work for you? I’d love to have an update.
Hi
I have poly Malaga rheumatic. In sept 2018 I started 20 mg of prednisone and have gone to 3 2.5mg daily plus methotrexate once a week. The pain is gone but my inflammation is still at 37. Where is the inflammation coming from?
Thank you for this posting. Though it is from a few years ago now it is what I needed to read. I am on a daily dose of 75mg for major inflammation from severe allergies. I guess this is a reminder that I need to just focus on getting better and watching what I eat. Not looking at my weight all the time – easier said than done though!
Thanks again,
J.xx
Hi, Jenn,
Yes, this article was written while ago but I am just now getting off the prednisone after being on it for over two years. By balancing being kind to myself, not sweating the weight thing too much, with eating as responsibly as I could and not forgetting to move when I could, I was able to keep my weight gain to the 20 pounds I mentioned in the article. You are on a very high dose, so weight gain is only one of many challenges for you! Take care of yourself! I am so glad the article was a help and I wish you the very best!
Just found your article on the net although it appeared some time ago, and thought it was very interesting and humorous. I am down to 2.5 of pred. for the next 3 months for my PMR. Hoping the weight gain at this dose will ease off a little. I’ve put on about 10lbs but because I am only 5′ it really shows!
Best wishes.
Just found this site today, so wished I could right like you funny.
I was on a daily dose of 120mg for almost 10 years. I was 32 at the I was put on prednisone for asthma. Weight gain was only one of many side effects I have had. I still have to be on this drug ever now and then and each time it is very hard to watch the changes my body goes through. I have never lost all the weight I gained, but I work at each day. I too use Lose-it app and find it very helpful in the fight. Right now I am stepping down to 10mg tomorrow and am hoping some of the side effect will start to go away.
I will say this about the weight gain. I am a live, I have turned into a very good healthy cook. I workout doing something everyday. If I slip and have a little more than I should I start a new the very next meal.
Wish good health
I have an autoimmune hemolytic anemia and I was put on 250 ml of prednisone for 3 years when i was 32 years old. I had a central line that was feeding me liquid form for 1 year and then took it orally for 2 years. with a whole other medication. I gained 150 pounds in those three years. I was 5’7 and 160 pounds and now I am 5’4 and 314 pounds. They had to remove my spleen so now I have no immune system. I’m happy to be alive but it is very hard to loose all this weight. I’m not on any medication any more I have been off for over 6 years now, tried every diet there is but can’t seem to loose the weight. I don’t eat a lot to begin with. 3 small meals a day and lots of water. I swim now that the weather is warmer. All I can do is accept that my body will never be what it used to be. Just keep eating healthy and try and move as much as possible. If anyone knows how to get rid of all this fat that would be great!
Wishing everyone good health!
Your poor dear . I to have been so ill for over a year.Stiil I’ll but better than I was,as I was near death. However prednisone has been a miracle drug it’s also a curse.I have gained 57lbs and at 5’1″ look like a absolute hippo .with moon face buffallo hump and great big stomachs. Attempts Wei to titrate my dose down about 6weeks ago or so landed me back in hospital for five days with liver kidney failure again. So guess what dose higher than ever. I try not to be ungrateful or fuss about it but it’s hard look massive . I hope all of the best to every one on the link .
You are right, of course, to point out that it is hard to “look massive”. And also correct in saying that as hard as it is, we all do try hard to be grateful for this awful yet amazing drug that keeps us alive. I hope you are feeling better these days.
I just recently found this article. My husband finished his treatment for nephrotic syndrome in March of last year. He gained approximately 50-70 pounds from the treatment and has yet to lose them. He will lose 6 pounds one day and gain it back the next. It is a constant roller coaster with no real change. He is using the Lose it app and recording everything and eats 2200 calories or less a day (he would have to eat 3500 a day to maintain his current weight). Even with this and walking, golfing and strength training, not much is happening. I am at a loss as how to help, outside of healthy eating. Any suggestions would be welcome. Thanks!
Thanks for this! I stumbled across this while looking for re-assurance and maybe some advice on how to tame the prednisone beast! I started taking it March of this year for inflammation around my heart. I was able to finally come off it in July, but got sick again so I’m back on it now. The first round I was diligent on food intake and exercise, and only managed to gain 5 lbs. This time, however, I have not been so lucky. I am not allowed to exercise anymore, and it has been harder to control my appetite. I am doing a slow ween and am finally down to 7.5mg, but still have many months to go before I’m completely off. I have gained about 20 lbs (I stopped weighing myself a month ago because it made me more depressed than I already am).
I am so very thankful that I am alive and somewhat healthy. Sometimes I read peoples’ stories and feel bad for feeling down on myself. I’m just trying to make it through this round of steroids without losing my mind or another pair of jeans. I was promised that I wouldn’t be put back on them if I got sick again so that I am very thankful for. less than a year ago I was told I was an hour away from being dead, and if I did make it through, I would need a heart transplant. I am alive with MY heart, so I have SO much to be thankful for…. But it is still so hard trying to button my pants everyday.
Anyway, thanks again for this! I will be going back to it for the advice and the feel-good humor.
I know this is an older article. I wanted to thank you for it and all the comments. They are very helpful and reassuring. I have been on prednisone for 1 year continuously and several years before as ‘bursts’ to treat flares. I range between 60 mg clear down 2.5 mg but have settled in at around 10 mg a day. I have put on 30 pounds this last year. I am happy that my symptoms of my disease are being more controlled but I can’t even recognize myself in the mirror now. I am trying to be kind to myself and stay positive. It’s a lot harder then I imagined, I hate seeing people who haven’t seen me in a while. The people who have watched my body transform to this round soft state, but don’t know me well enough to know I am treating an illness, become my biggest obstacle. I want to shout “I’ve been on high doses of prednisone, it’s not my fault I am fat and crazy”. As summer is coming I have dread, none of my summer clothes come close to fitting me and my body is out of shape, swollen and mushy. I have no confidence to show any part of my skin. I pray for rain and days in long shirts and hoodies. It’s easy to think you can accept the way you look, as long as you are healthier, it’s very hard in practice. There is good in my journey too. I am kinder and have less judgment of others. I am stronger in my faith. I love my children, husband and my family more! I didn’t even know it was possible. My love for them help me accept the things I cannot change. I know my road could be worse. It is helpful to read this and know I am not just shallow in missing my old body, but the loss is real. I am working to accept my new road and my new body, I am not giving up on being at a healthy weight, but understanding my body is different now.
This year as been terrible for me for constant flair ups of my asthma, as a result back to back steroids all year which as as result caused me to gain a lot of weight especially a moon face. And it’s really really getting me down. How can I lose this extra time weight.
I am with you there. I am now so paranoid about my asthma going out of control! Even though it’s controlled regularly through medication, this last year has been the worst! I’ve put on a whole 23 pounds since February from having to take prednisone so often. It’s like this weird catch 22. I try to work out to get this weight off, but my lung capacity just tires me out. It’s just nuts!
I also have gained a lot of weight from this meditication , I’ve been of it about 2 weeks & stilled gained weight I went from 124 lbs to now 150 & I don’t know what to do can I get some advice thank you
Hi, Alina, Please read through this article carefully and all of the comments and replies. I think you’ll find some helpful stuff there. You want to slow down the weight gain, that’s for sure. Prednisone has a long half-life, which in pharmaceutical terms means it stays in your body for a long time before it is completely metabolized and out of you system. The good news: sounds like you are OFF prednisone now!
Hi I have only just started taking prednisone 40ml for inflemation, I am 46 years old and am already over weight!!!
I am so worried about the effects of this drug and almost want to stop it before I’ve even started!!
What could happen if I reduce the dose to 20ml?
Could you also tell me if taking water retention tablets will help?
Tanya
Do not reduce the dosage of your prescription for prednisone on your own! Do not mess with that without talking with your prescribing physician! Seriously, I am not messing around here. Prednisone has to be carefully weaned off. That’s one thing. The other thing is: Many of us take what are called diuretics to decrease water retention which may be caused by the condition we have or the medication we’re on. Again that is a good question for your medical professionals. Another possible way to reduce fluid retention is to cut salt out of your diet as much as possible and, ironically, drink a lot of water. But again, ask your medical team first.
Thank you for this article . I have polymyalgia and am on prednisone, and have been for 8 months. I look like I have swallowed a balloon, and my stomach is so distended as well as my cheekbones. I am five foot one. Soon I shall be like a walking pudding, unless my efforts at curbing the appetite works. My report from my heart specialist mentions “signs of obesity” and so I am mortified. I manage a gentle exercise class twice a week, and walk (it’s amazing how much shopping helps with that) even with pain. I hope to survive without more complications. Keep up the good work everyone. I heard today of someone who is off prednisone and is now far too thin!!
Is there such a thing as far too thin???
I also suffer from PMR andGCA
Hang in there and keep moving it helps
I know it’s been a long time. I hope you are feeling better, Barbara. I wanted to address the far too thin thing because it can be misleading, just as misleading as calling medication driven weight gain “obesity” :(grrrr!) What we tend to forget is that underneath the water and fat retention that prednisone causes, is muscle and bone. Weakening of muscle and bone is listed as a “side-effect” of prednisone which can look like “far too thin”. Keeping up even your gentle exercise routine will help keep you from going there. But I also get it, when we’ve been on the other side of skinny for so long it’s hard to imagine being too thin!
Just found this, I have ulcerative colitis and the past 3 yrs have been hell. Been on all kinds of med, infusions, now on humira, petrified to gain weight it is putting my stress on me. I am on low residue diet which includes only white carbs. Veg, fruits not allowed now. Dr. Wants to put me on On 40 mg prednisone and ween me off every week. Some one please help me. Would love your thoughts. My email is judy12753@yahoo.com
How are you doing, Judy? I have UC, too. The low residue diet is what they tried to put me on as well, but it’s awful. A terrible experience with prednisone brought me to this article in an attempt to be prepared in case my UC decided to attack before my wedding.
I have been on prednisone 120mg QOD for a kidney disorder since May. I am finally starting to taper down.(on 40mg QOD)I’ve gained 30 pounds and I’m afraid that it won’t come off. The pain from the weight gain is hindering from exercising. Any suggestions?
I keep searching for things about weight loss on prednisone. I am 5’0 and last time I was weighed (in October) I was 157 pounds. I have arthritis (at 16!) and am currently on 30mg. I had lost 10 pounds from the arthritis and then gained over 20 pounds once on the meds. I probably weigh more now, I have the moon face and I hate it! I am currently also taking actemra(injections) and my doctor told me to start taking 5mg less of prednisone once I’ve been on the injections for a month (because I had a bad reaction last time I tried to lean off without the injections, he’s hoping it’ll cancel it out) which’ll be next week. I’m extremely impatient and just want my old weight back. I look at pics from 6 months ago and I’m so mad that I didn’t appreciate it more. All I read is that losing the prednisone weight is impossible and people barely lose anything once they get off. I’ve even read that you don’t lose face fat until your under 10mg. Did anyone start off at 30mg and then lose the weight once they started slowly coming off? Any pointers?
Also, it’s even worse because I don’t have an excessive appetite or get that hungry, yet I’m still gaining like crazy.
That’s absolutely the worst. And so true. So often the best I could do when on prednisone was keep the the weight gain at a trot instead of full on gallop!
Hi, Melissa, I’d like to hear what others have experienced. For myself, once I started tapering I at least wasn’t gaining weight any more, but I had to be completely off the prednisone and off for a few weeks before I felt any weight come off. It always took much longer to lose the weight than it did to gain it. Totally not fair! One time I was able to get off the prednisone. I consulted with a nutritionist to help me lose the weight. We made progress with a sensible, balanced diet that (finally!) I could control.
Hi dr aletta.
I finished an 8 week course of prednisone (tapered from 40mg) about 2 weeks ago and haven’t noticed any change in my body yet. How long after stopping did u realise a difference ?
Hi, Sophia, I’m going to take guess that what you mean by “realize a difference” is “when will I lose the extra prednisone weight”? I’m not a medical doctor so please understand that I can only speak from my own personal experience. The moon face and other changes that were brought on by the prednisone took longer to resolve that they did to appear in the first place. I know that isn’t fair but it’s how it is. You can help things along by smart eating, drinking plenty of water, avoiding salt and exercising a big dose of patience. At some point, you will look in the mirror and see yourself again.
I got a kidney transplant. And I have been on massive steroids. They gave me infusions of 1000 mg. And started me on 200 and now I am on 2.5 mg. It is very possible to lose weight on steroids.. You have to only eat raw veggies anf keep you calories under 1000. That is still alot of foid if its fresh veggies. And don’t drink liquid calories. Do some form of walking everyday. You will see results in no time
Hi, Melissa! Congratulations on your new kidney! That is wonderful! My sister had a kidney transplant in February and is doing quite well. I hope you are doing well, too.
I’m going to take a leap and assume you consulted with a Registered Dietician or nutritionist about your food and fluid intake. If you haven’t, please do. You probably don’t want to hear this: 1000 calories is considered very low and puts a person at risk of complications in metabolism, loss of muscle mass and other problems. Eating only veggies, without important protein, may also contribute to deficiency issues throughout the body. Please let your medical professionals know what you are doing so that they can help you judge whether or not you may be putting your brand new kidney, not to mention your other internal organs, under stress unknowingly. Losing weight can wait.
Starting a 60mg dose of prednisone for low platelets during pregnancy. I’m 34 weeks so the longest I’ll be on it (if it works) is 6 weeks (my Dr will take me off after I give birth). Already having gained weight from the pregnancy, I’m terrified of packing on more lbs! With sensible eating and exercise (as much as I can do at this stage) what do you think I should expect as far as weight gain over 6 weeks?! So nervous!!
Your doctor and I want you to relax for your sake as well as baby’s :). And you have reason to relax. The best news is you have a medical professional who is on top of what you and your baby need. Further, you are taking that advice, despite your nerves. Good for you! The second good news is you will not be on the prednisone for very long. By now we’re talking about a few weeks, which may feel like forever, but will fly by. The weight you gain now is in part because your baby is growing and, yes, what the prednisone contributes. But that will come off after you’ve delivered and recovered from delivery. You are doing your best by eating and exercising sensibly. Give yourself a big pat on the back, time and patience. In other words, mother yourself as well your child.
Thank you very much for this post. I was on Prednisone for 2,5 years, starting on 60 mg per day, last 9 months just 5mg. Now i am completely off for 3 weeks and – more likely i have GAINED one pound. Tracking my calories with Lose it! already before the taper, with approximately 1500 calory diet. I cannot eat much less, because i am a kidney patient and we must eat. Also low carb diet is impossible, because i must limit protein in my food. In total i have gained about 26 pounds, would be happy to lose at least half of it, but in this moment seems hopeless. One good thing – my moonface is really going away. Is it possible weight loss is more difficult, if prednisone has lead me into menopause (much too early, but my period stopped one month after starting prednisone)? Best wishes to everyone struggling with the same problems!!! I
Hi, Eva, Congratulations on tapering off and losing that moonface. Isn’t it nice to see your beautiful smile in the mirror again? It’s way too early for you to feel hopeless, even though I do get it. When menopause is thrown into the prednisone weight-gain mix it can feel pretty unsurmountable. Despite this, your goal of losing half the prednisone weight sounds so reasonable! If you haven’t yet, consider a consult with a registered, qualified dietitian. A good one could help come up with some creative ways to balance the type of nutrition you need to keep your kidneys happy and off prednisone. And you don’t mention exercise. Check in with your doctor. If she/he gives you the green light, look into incorporating some cardio (walking, running, biking) and cross training (lifting weights, using resistance machines), into your daily routine. Sweating a bit might be the magic that helps burn some of that extra prednisone weight.
Thank you so much! My physical activities include quite much walking every day. When i stopped prednisone, i was very weak first 4 weeks, also much pain in arms, shoulders, back, so i started to walk much less, but now i try to get back to my usual 5-10 km pro day. My doctor suggests also pilates. For me fast walking is what truly makes me happy.:). But i shall try to include also pilates in my schedule. Thanks a lot!!!
Hi, Eva, I’m so glad you’re moving. Walking has been called the ideal exercise! Do what makes you the happiest! Pilates can be a bonus to support your walking. Did you know pilates was created by Dr. Joseph Pilates to help bedridden WWI soldiers recuperate? True story! When I was younger, between relapses, I used to be a runner. That was the exercise that made me happy. In late middle age, after several long episodes on prednisone, I never thought I could run again. After two years off prednisone and dedicated work to strengthen my muscles (and bones) I started ever so slowly, to walk for exercise and stress reduction. Then walk/run again. Then run. I’m not saying you should run, because walking is awesome. I’m saying we should, when we can, do more of what makes us happy.
I have been on various doses of prednisone since I developed mycoplasma pneumonia and was barely alive. This illness triggered Adult Stills Disease. Now my immune system is fried, but I take 10mg daily, increasing to 60 mg with flares of all my autoimmune diseases and asthma. When my pancreas was attacked, I lost so much weight I was a bag of bones. I had back surgery in December, and of course up weithe doses of prednisone. I was eating NOTHING! However I could literally feel the weight going on. I dread waking up every day, because my clothes keep getting tighter. My motto is: never give up, it’s better to take the prednisone and feel healthier, the weight wecan work in. I didn’t say it was fun!! Keep a positive attitude everyone, I too have dark days. Yes, but I am alive.
Thank you, Barb.
Hi. Thanks for posting ur experiences and advice. It’s very reassuring to see how others deal with our good bad and evil friend prednisone
I have RA and started taking prednisone to stabilize flare-ups in burst dosages. I ceased using it when I was prescribed methotrexate This worked well for about a year but I continued to have an elevated wbc. After s battery of tests it was determined I have inflammation inlungs probably caused by the RA
I was just prescribed a 40mg per day of prednisone for the next 6 weeks
I experienced no weight gain previously when using it. Since last July I have lost 105 lbs through diet and exercise. My goal is to lose another hundred ( I’m 6feet 4 and weighed 415 lbs. now I m still 6’4” but as of today weigh 310). I workout 5 days a week mostly aerobics .
I have read a person can realize anywhere from a 5lb to 7 lb weight gain for every 10 mg of prednisone u take.
My question is : can weight gain be controlled by strict dietary control ; decrease sodium intake: increase potassium; don’t binge eat; exercise; and finally deal with the side effects that u can’t control. Am I being realistic? Some weight gain might be inevitable and how it is distributed I have no control over.
I just started this regimen a few days ago – so it goes
Thanks for having this forum. Your humor and wit is appreciated.
Hi, Bob! Congratulations on the weight losing over 100 lbs in a healthy manner despite the RA and meds. You are amazing!
To clarify, your question is: Am I being realistic? The thing for which you are asking if you are realistic is: Can weight gain be controlled by strict dietary control; decrease sodium intake: increase potassium; don’t binge eat; exercise; and finally deal with the side effects that u can’t control. Some weight gain might be inevitable and how it is distributed I have no control over.
The keys words here are “weight gain control” with this regimen, while on prednisone. I believe that weight gain control is realistic. I did something similar the last time I was on prednisone for over two years. I still gained weight, but I know in my heart that it would have been much worse if I didn’t try hard to eat right, exercise, drink lots of water, lose the salt, etc. There is something about prednisone, which is a steroid, after all, that changes the metabolism and distributes fat in our face, upper back and belly. So no matter how hard we try we are going to gain weight. It’s human to be discouraged. We all need to remember to be proud and kind to ourselves for doing the best we can under these conditions.
Thank you for posting one of the few reviews of prednisone that doesn’t solely blame the person overeating for the weight gain…prednisone in high enough amounts will put fat on.
I was on a salvage treatment of 250 mgs of prednisone a day, (I know that’s a massive dose, I was given too much chemo) then tapered. But I could tell you that it really didn’t matter what I ate, I could barely eat at [all] as it was. I never over ate—it was impossible for me at the time, but I still gained 30lbs. Thanks to prednidone’s extremely long half life — It took me years of excercise, strength training, cardio, to get that particular prednisone fat distribution off. It was so tough. Cancers gone and I still have a small roll on the belly.
It’s *almost off.
Hi, Diane, You are a Cancer/Prednisone survivor superhero and role model! Your recovery is an inspiring story of hard work and persistence. Thank you for sharing your story with us here. My head nearly exploded imagining being on 250 mg of prednisone for any amount of time! Weight gain is not only one thing we have to deal with at hight doses. That, and everything you went through, had to be a trial by fire. Who cares about a “small roll on the belly”? You are a strong, resilient woman! You are amazing!
Enjoyed finding some kind of solace/understanding. Been on Prednisone nearly 5 yrs for fibromyalgia. It is a miracle drug, period, for the intense pain. However, I have gained 35 lbs-call it my “prednisone baby” and want to contact the manufacturers so I can name the “baby” after them and to tell them, “You know, when your whipping up a batch of prednisone, just simply leave the “fat-causing elements” OUT!!!! I would gladly pay much more for the drug, as would everyone else I’m sure!!!Although it works well for the pain, wagging around the extra lbs. leaves me breathless, so I do less. I eat amazing well-never eat out, no processed food, no starch, non-fat dairy. Snack on a couple of shrimp, scallops, tuna or oysters (all plain). Meals are tilapia, salmon, chicken breast with frozen veggies and edamanes. Love how my pred lets me feel-hate the belly, moon face, and lump on the back. Do you suppose if they wanted to specifically make a drug to do that, they could???? We all know……they could.
Hi, Sue, Fibromyalgia can be very painful. I’m glad you’ve found some relief with the prednisone. It’s so good that you are eating well, with lots of protein and whole foods. That is wonderful. You might want to talk with your doctor about your breathlessness when moving around. Generally, for many of us with auto-immune disease, a vicious cycle can develop where we move less because we are either in pain or feel literally weighed down. Not moving results in increased pain and reduced cardio-vascular health, which keeps us from moving. Research supports moving for pain reduction, maintaining range of motion and heart/lung health despite our inflammatory illness. I understand why you do less, I just ask that you check in with your healthcare pros to see if there is anything you can do to gently move a little more.
Putting that aside, I assure you that the pharmaceutical industry would love nothing more than to discover a “weightless” prednisone. I am no fan of ‘Big Pharma’ but you are right: you, me and millions of others would pay a lot for that medication. Which is why, if they could, they would. Not only would it make them rich[er], whoever discovered weightless prednisone would win the Nobel Prize!
I was diagnosed with double pneumonia back in August and was hospitalized for two weeks and treated with antibiotics. I went back to my doctor in November still feeling like I had pneumonia so I was prescribed another dose of antibiotics. Fast forward to January 2, 2018 I woke up not feeling well had shortness of breath when the rescue squad got there my oxygen level was 69 I was taken to the hospital rushed into surgery to have a portion of my lung removed and a chest tube put in to drain the fluid. I was put on life support and in ICU on high flow oxygen at 6 liters. When I awoke 6 days later they informed me that the pneumonia I had in August never went away and that it had turned into organizing pneumonia and it had attacked my lungs so they had to remove the part it damaged. I was finally discharged on January 28, 2018 only to be home two days before I started having real bad chest pain so back to the hospital I went to learn that I had a pulmonary embolism they were giving me heparin to prevent blood clots and I was having terrible leg cramps come to find out I was allergic to the heparin and had DVT in my right leg which the clots were breaking off and causing the leg pain. My team of doctors were scared that I would have another pulmonary embolism and my body would not be able to handle it so I was rushed into surgery again to have an IVC filter put in. I have been through hell and back. I was on 240mg of prednisone in the hospital, discharged at 40mg for 3 weeks and then dropped to 20mg which is where I am at now. I have gained 30lbs in one month. I have the moon face, my stomach looks like I am 9 months pregnant and I cannot fit into any of my clothes. I am already depressed enough with everything that has occurred plus being on oxygen 24/7. I need help to loose this weight because I will be on prednisone for at least another month until I see the doctor. I did get my doctor to prescribe a fluid pill to help reduce the fluid retention I am having. I am thankful to be alive however I am so miserable with all this extra weight it makes it harder to breath. I am unable to exercise due to my oxygen levels dropping so quickly with exertion plus a back injury I have from a car accident in 2008.
Amanda, you have been to hell and back, several times in fact. I am so sorry for everything you have gone through. There is a lot going on with your health, weight gain being one. Right now is probably not the time to be thinking of losing weight. From this distance, I am not qualified to give you direct advice. My approach while on prednisone is weight gain control, not weight loss. I hope you have doctors, or just one doctor, physician’s, assistant, nurse practitioner, patient advocate, psychotherapist, any qualified medical professional, who you can talk with, who listens to you, sees you and is willing to be creative about how to help you on all fronts. You need, and deserve, to have that person, someone with boots on the ground next to you with your best interests at heart.
Dr. Aletta,
First, I would like to thank you for creating this website. I find the comments to be both helpful and enlightening to those who have to take prednisone for various reasons.
While not meaning to sound too critical, I would like to suggest that you clarify your title. From the one remark that you posted on February 8, 2018, I understand that you are not a “medical” Dr. I presume that you are phD?
I believe that some people, (including myself) when first seeing the title “Dr.” in front of a name, wrongly presume the writer to be a “medical” Dr.
You have likely clarified this more than once, however I only saw it one time. I suggest that it would be helpful to the readers if you were to clarify your title by addressing yourself as phD, rather than just “Dr.”
I recently visited another medical forum where a moderator,also a phD, did not address himself as “Dr.,” but merely his name, with phD after it. I do think that this is especially important when one is commenting in a forum that is medically related, so readers do not think they are receiving medical advice.
Thank you for not taking offense at this comment.
Hi, It’s really great to hear that you find the blog, articles and comments helpful. Thank you. I love it when people contribute to the conversation from their own place of experience and wisdom. About the “doctor” thing: Psychologists get this a lot. We have doctorate level degrees and education. I am a clinical psychologist which means I have training, education and experience as a scientist researcher as well as a clinician who provides clinical, person to person care. The title “Dr.” is appropriate and descriptive for people with a Ph.D, but I understand where you’re coming from. Doctors who are M.D.s rarely have to explain themselves, which makes me chuckle, I have to admit. I do my best, here on this blog, and in my other writing and presentations, to be clear about who I am and what I am qualified and not qualified to address. M.D.s and Ph.D.s all have something important to bring to the table while respecting our professional scopes of practice. I can’t tell a person whether or not it’s OK to change their prescription, so I don’t, and I explain why. As a psychologist, I am able to explain, amongst other things, why that particular medication at that dose may be influencing your mood and quality of life, how to non-medically cope with it, tolerate it and diminish the side effects. Physicians often are not trained or qualified to give advice for the psychological aspects of dealing with illness, just as I am not trained or qualified to cut someone open to take out an aggressive tumor. A good professional knows and respects their limits; when to defer and/or refer to another specialty.
I thought long and hard about how to present myself to the public. I usually choose “Elvira G Aletta, PhD” for non-conversational situations, like in email signatures, bios or my online profiles, and “Dr. Aletta” when the communication is more conversational, like on this blog and in these comments. I don’t do the “Dr. Phil” thing because frankly, my first name is a challenge. If I was Anne or Jennifer that would be one thing, but “Elvira” is often mispronounced as el-VI-rah, when it’s actually pronounced el-VEE-dah. Most people don’t know that and why should they? So it’s Dr. Aletta until we know each other better. Then, please, call me Elvira. Just, I beg you, pronounce it “el-VEE-dah.” Thanks!
What kind of doctor are you?
Hi, James, I am a clinical psychologist.
I was diagnosed with organizing pneumonia recently after 2 , 2 week stays in the hospital. Actually I have not felt well for a few years , was always told I had pneumonia. I have gained 40 pounds the last two years and have been on a lot of predinsone. I have moon face and am very bloated… I am 5’2” and my normal weight is 125.In reading about autoimmune diseases this is the only post I have found that someone else has organizing pneumonia. I feel so hopeless, like I’m not going to get better. I am so tired even thought I sleep all night. Is there a reason I haven’t heard much about organizing pneumonia?
I’m sorry but organizing pneumonia is a condition I don’t now anything about. Have you asked your diagnosing physician or nurse for a link to an article or chapter that would help understand this? Be careful with what you read about it on your own because your case is unique. When I was diagnosed with scleroderma I had no clue what it was. I started doing some research which was a mistake because it was full of worse case scenarios. In addition to your medical team, if you have a good, trustworthy friend, one who is not prone to drama, who could do the research for you, that might be helpful.
I had lost 50lbs and maintained for over a year, so just ditched all my “fat” clothes. I had to go on long term steroids until i can get on immunosuppressant for lupus and myasthenia. I’ve since gained 40lbs in one month of steroids, mostly water. I’m on 2 diuretics can barely breathe or move and nothing fits. My daughter is graduating in 2 weeks and I’m already dreading the pictures. I have moon face, jump back and stomach so tight it’s like I’m 9 months pregnant. I had just gotten to a happy weight. I know these are necessary to keep me out of the hospital and alive, 7 hospitalizations since xmas, but its really taking a toll. Sorry, think i just need to vent.
Vent all you want, Chauncey. Most of us in these comments know exactly how awful it is to work so hard taking care of our body, to work for a healthy weight we feel good at, just to have it taken away, what feels like over night. I’m not crazy about having my picture taken at any time, but when on prednisone, when I don’t feel like I look like myself at all, forget it. I’ll say the corny thing, because as corny as it is, it’s true. Your daughter won’t care how you look. She cares desperately that you are THERE, alive, being a badass role-model of determination and love. Having said that, wear something on the darker side of the spectrum, stand at an angle, and smile!
From Jan to July 2017, I lost 30 lbs with exercise and leaving out sugars and large helpings.This left me at 131 lbs. In September, I had an episode that left my right eye blinded in the spur of a moment. No warning. I found it to be GCA (Giant Cell Arteritis). The protocol is to pump 3000 mg Prednisone over a three day period in the hospital; preventing the loss of vision in other eye as well as numerous other symptoms. Afterwards, I was put on 100 mg a day decreasing monthly until today, May 10 2018 I am on 5 mg a day. Now in the interim, Nov. 2017, I started another medication recently approved for RA, 280 mg Actemra a month by IV.
Between the two meds, I have picked up exactly 20 lbs. I fought furiously, running, exercising and watching diet (no salt, no sugar) The weight stays on.Then, they diagnosed another ailment, Polymyalgia Rumatica. This one hurts every joint, every muscle and prevents the exercise and running that I depended on the keep the weight down. My daughter is a nutritionist and helps me the best she can. I could handle craving before all of this set in. I just try and pray. I am 73, so as long as the labs say that my arteries are withstanding the whole thing, I am going to live and eat as well as I can with health in mind. Please don’t beat yourself up. This site should help you understand you are not alone and there are a lot of (normal?) young people out there who look a lot worse than me and are proud to wear the skinny jeans!!! Health over pride and ask God’s help.
Your wisdom is priceless, Peggy. I am grateful to you for sharing your story with us. You have such a youthful voice, I gasped when you revealed your chronological age. You remind me of my older sister, who underwent a kidney transplant after years of dialysis and all that comes with it. Pure spirit without age. “Health over pride and ask God’s help.” I’m going to share that everywhere!
I have so appreciated reading this today. I too have been struggling with a large weight gain from prednisone and corticosteroids. Reading peoples stories and Aletta’s responses has made me feel more accepting of my situation.. I need to be compassionate to myself, it is not my fault I have gained 50 lbs.
I received a kidney transplant 39 years ago, after six years of home haemodialysis. This miraculous gift was from my sister. I want to stay focused on the miracle, rather than the weight of my body. The positive rather than the negative.
God bless you, Kathryn. I pray that your new sister-kidney continues to do it’s miraculous thing. My sister was on hemodialysis for two years until her husband turned up to be a match and she got her husband-kidney. Six years on dialysis! I can’t even imagine. I applaud your wonderful attitude: “Staying focused on the positive rather than the negative.”
4 years ago I turned my life around. I lost over 60 pounds in under a year with the help of Loseit (healthy diet) and Fitbit (daily walks). Fast forward to April 2018, I was diagnosed with ITP. A rare blood disease that attacks itself. The first treatment is prednisone, which failed to stabilize my problem. I am currently tapering off prednisone. My doctor is trying other non-steroid treatments for my disease. However, along with the stress of coming to terms with a disease that will never be cured I am dealing with the stress of weight gain. I have gained close to 20 lbs since the diagnosis. I do have a lifetime membership with Loseit and plan on getting in control again. My question is…what can I realistically expect to see as far as weight loss? I know how to lose the weight. I have done it before. In fact, I have done it twice. Last winter I had bunion surgery on both feet and lost the few pounds from that. Will the prednisone make losing the pounds harder and take longer? What are your thoughts and/or experience with this?
Dear Penny, In my experience and the stories I hear from others (in other words, not scientifically proven that I know of) when we’re taking prednisone at high doses (anything over 15 msg a day) the best we can do is focus on weight management. That is. doing what we can to keep the weight gain down and maintain where we are. AT the lower doses and , please God, when we’re completely off, some very slow weight loss may be possible. Prednisone has what is called a long half-life, which means it sticks around in the body so there is a continual release of prednisone for a while even after we’ve stopped taking it. That’s one reason weight loss is slow despite being off of it. I learned this the hard, frustrating way which is why I’m sharing this with you. Patience and determination is the key. But being kind to yourself is also important. I admire, so much, that you turned your life around four years ago. Then to have this rare blood disease hit you, that’s just awful. You sound like a tough, resilient lady. If you continue to do the best you can, which sounds awesome, you will be OK. Just please remember to be nice to yourself along the way.
This article and the comments have been super helpful. Thank you!! It’s nice to know that I am not alone in this part of chronic illness.
After having a bone marrow transplant to treat a rare blood disorder I was started on prednisone for treatment of Graft Verus Host Disease. I have been on prednisone for 9 months and have gained 35 pounds. To be honest I was happy at first to put a little weight on as I was really thin.
Now that I am the heaviest I have ever been in my life, I feel so gross. I have always followed a fairly strict diet but this is something entirely different. I am always hungry!!!! I am also very active. I walk my dogs everyday for an hour, I go to yoga 3 times a week. I downhill ski and hike too. I am so grateful to be able to do all these things, but I cannot seem to stop putting on weight. I also feel like I have no ability to gain muscle. Or if it’s there it’s under a huge layer of fat.
My dose was originally 55mg a day. I am currently down to 10mg per day. I keep hoping to look in the mirror and see my face as it used to be. Not a huge puffy mess.
I am going to take the advice of no sugar and no salt and hope that helps with the swelling of my hands. I can’t wear my rings and needed to replace every bra I owned with a larger size. Oh and almost every piece of clothing in my closet.
Believe me, I am happy to be alive!! Grateful everyday. To imagine that after all the treatment I went through for my chronic leukemia that this seems to be the hardest part.
Thank you for sharing the article!!
Thank you very much for sharing your story, Sharla. I hope that by now the dosage has gone down even more. Keep up the movement and the great attitude! Even though it may not show outwardly it is making a difference.
Yes. Fighting the Prednisone weight gain monster and feeling the mood shift to hopelessness. Contemplating the pros and cons…do i take the prednisone and gain weight or go blind and get skinny again. Its not a real question. I dont wanna be blind. But. I also dont wanna be fat. Im just frustrated and feel that growing along with my waist size . Thanks for your article. Ill give your suggestions a try.
I’m a great believer in the occasional pity party. Healthy people don’t get it when they say “you shouldn’t feel sorry for yourself”. Sometimes we just have to say “This sucks.” That’s all. Full stop. We just don’t want to be 100% stuck there because there’s a life to live, people who need us and love to be given and received, big waistline and all.
i see that the comments are from years ago and i don’t know if anyone will read this. but i wanted to say that i was on prednisone for 2 and a half months and now I’ve been off it for two months but the moon face is still noticeable. i don’t look like the person i was before. i still have fat in my cheeks. i haven’t gained weight anywhere else except my face and i’m actually underweight. i’m still in high school so it’s difficult when all my peers notice the change and i’m just constantly so sad. is there anything i can do to help it? i feel so helpless i don’t know what to do. i’m just here seeking reassurance i guess. thank you xx
Lana, First, there is a community here, there are more recent comments, it’s just my fault for being a not great moderator. I apologize. If I was more on this I would have said that it always takes a lot longer to get rid of the fat side effect of the prednisone than it did to bring it on. It’s a biochemical thing having to do with the long half-life of prednisone, how very long it takes for it to leave our body even after we’ve stopped taking it. I’m hoping that by now you’re beginning to see your face come back. Please let us know.
I’m currently hacking this situation right now, and I’ve found that entirely cutting out sodium is the BEST way to avoid the weight gain. Literally, I’ve seen my Moon Face blow up on weekends when sodium is a main ingredient in my foods. It’s not even funny how fast it happens too.
I’ve been on a raw diet since finding that out, and slowly, but surely, the weight is falling off. There is nothing worse than the prednisone moon face, wow, I wasn’t ready for that.
Yay for you!!! Cutting out sodium/salt can be hard. So much food at restaurants, processed before it comes in your door, is loaded with salt. It takes a while to teach our taste buds to live without it but it does happen! In fact, eventually we start tasting tastes that were masked by a layer of salt. Who knew vegetables could be sweet? And the wide variety of non-sodium spices and herbs! I no longer have salt shakers or grinders in my house. When guests come over I pour some loose salt into a bowl for them 🙂 And yes, the moon face is one the hardest side-effects to live with. It’s our face! It’s pretty awful when we don’t recognize the person in the mirror. But you’re in there and it’s great that you can manage it by managing your food and drink intake.
I have organizing pneumonia…just found out. Does anyone know anything about it. I have been so sick and feel so hopeless.
I seriously wish I knew. It’s new term for me. Your diagnosing MD should sit down with you and explain, to your satisfaction, what it is and what the plan is for treatment. If they don’t then go to their superior. If they don’t have a superior consider getting a second opinion.
Hi I am just now seeing this post. I am looking for answers that none of my doctors have addressed. I had been on prednisone for 10 years at 12mg per day. i gained about 15lbs initially which went away. Then I lost about 20lbs over about a 6 month period 6 years ago. I was very underweight and had zero muscle tone. I have been off prednisone for about a year. I started gaining weight as soon as I came off of it. I am now up 25lbs and do not know when it will stop. Has anyone gained weight coming off of prednisone? Is muscle wasting a side effect of the drug? Is my body just returning to its healthy state? I am a dietitian so I understand calories in vs calories out. I cannot mathematically explain how I am gaining this much weight with what I have been eating. If anyone has experienced anything like this, I’d really appreciate some advice.
I just recently had a kidney transplant. I went into the hospital 130 lbs and left 5 days later 158. I had 2 very high injections of prednisone then left the hospital taking 35 mg every day for 1 month then decreased over time til now I’m on 5 mg a day for the rest of my life along with the rest of my medications. I walk 4 to 5 miles a day and strength train with a trainer 3 times a week, watch what I eat. I am more active now than I now then 10 years ago. My question… is how long do you think it will take for my weight to stabilize and start losing some of this weight?
You might not want to hear this but I’m going to say it anyway: I wouldn’t be concerned about weight loss for a year post-transplant. You have a new kidney! No more dialysis! Congratulations! You are doing everything right! So continue to be honest about what you eat, staying within a reasonable calorie intake, move the way you are and get plenty of rest. Get stronger. Your weight should be stable soon. Weight loss will take longer but it will happen. Love yourself and the miracle your body is doing, keeping your new kidney humming away.