Anyone else lost weight on long term steroids?

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lfactor123
lfactor123 Posts: 3 Member
in Health and Weight Loss
Hey everyone!

So, I just was wondering if anyone had experience with steroids and weight loss. I have to take steroids for the rest of my life (I have Addison's disease). All the weight loss forums I've seen just say things like, "When you get off of them, go on this diet and you can get back to your goal weight". Well, unfortunately, that doesn't apply to me, so I have to try to loose the weight while taking them.

I gained at least 30 pounds since starting the medication. Dr lowered the dose slightly. so now I've been able to loose 18 pounds between going to the gym and being on 1200 calories a day. I'm totally happy about the weight loss so far! With that said though, so please don't misunderstand, I am a bit frustrated because I've stalled a bit over the past few months. I've been able to loose some, but it's REALLY slow and discouraging because I feel like I'm working hard.

The main frustration is the drug has disproportionately put weight around my middle. I've heard having a lot of excess fat there is one of the worst kinds of fat storage. This has also caused my blood sugar levels to be a bit high. I'm really trying to loose general body fat and gain muscle, and loose another 5 inches off my stomach. I've been going to the gym weekly and worked with a trainer a few times to get a workout set. I feel really alone in this because most people are loosing weight for different reasons. I never had a weight problem before now and generally ate pretty healthy.

So, has anyone else had success with loosing weight on these kinds of drugs? Is it even possible to get back to your original "before" weight while on steroids? When my body stores fat now, will it just automatically go to my middle or under my chin? I'm assuming you just have to lower your general body fat percentage to try to combat this?

Thanks for reading and for your help!! Anything would definitely be an encouragement!
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Replies

  • chiquitatwist
    chiquitatwist Posts: 54 Member
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    I don't know if this is an option for you, but there is a steroid called Entocort which is reported to produce fewer side effects than steroids like Prednisone (according to my Dr.). I have been on both at one point or another and found that I wasn't as hungry while on Entocort. As far as fat depositing, taking the lowest dosage possible is your best bet. Have you found your maintenance dosage yet or are you still playing around with it? I have been successful at losing weight while on steroids, but it does feel like it takes more work. Sounds like you're doing everything you can to stick with a healthy program, which is all you can really do. I know how frustrating it can be to work your *kitten* off and then look down and realize that you will never have the flat stomach that you've been striving for.
  • twoscimitars
    twoscimitars Posts: 272 Member
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    I'd be excited to hear any input myself. I am also on steroids. I don't have full blown Addison's yet, but I do have an adrenal insufficiency. I was on Hydrocortisone for awhile but that made me binge like crazy. The Prednisone makes me less hungry, but it's still tough to stick to a diet. Any help or advice would be most welcome.
  • riccoismydog
    riccoismydog Posts: 319 Member
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    Bump for later. I'm not on steroids, but another drug that makes me put on weight. I too can only lose it with a lot of work and calorie cutting.
  • sempertracy
    sempertracy Posts: 50 Member
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    Sodium intake, watch your sodium especially if you eat out. I go on steriods for my asthma intermittently and I have to avoid eating out, processed foods and no added salt. I gained nearly 30 lbs from my first bout of steriods. But you can lose weight while on treatment.
  • lfactor123
    lfactor123 Posts: 3 Member
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    @chiquitatwist- Thanks for the suggestion. Unfortunately, the Entocort is a slightly different type of steroid, in that it doesn't have the same impact on the adrenal gland that other corticosteroids have :( Seems like a great drug for other medical conditions, but in my case, I'm really limited to either hydrocortisone or predisone. I'm taking hydrocortisone, as the side effects are less severe, so I totally know what you mean about picking the lesser of the evils. I think I was on too high of a dose for a while when I first got diagnosed, so that really contributed to the weight gain. I think (fingers crossed) that we've found the right dose for my body, mainly because I stopped gaining weight every week. So, that was progress, but now it's just trying to loose the weight gained. Glad someone else understands, even if it sucks to deal with these issues!

    @ twosclmltars- So interesting that predisone makes you less hungry. I only did a short trial on it, and I don't remember being super hungry. The hydrocortisone is making me less hungry than it used to, BUT, I think the way I've tried to deal with the hunger pain is chewing gum a lot and eating a small snack every few hours. Some days it's really hard though...

    @sempertracy- Did you have a problem with food tasting really bland while cutting out the salt? I find that if I cut out butter or dressing to cut calories, I want to add salt.
  • Jeffswife15
    Jeffswife15 Posts: 2 Member
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    Hi, I was diagnosed with primary Addisons Disease in 2005 at UCLA. I have successfully lost weight at times through diet and exercise while on hydrocortisone. Had another baby and I am back trying to lose weight again. I have had low sodium blood results while on steroids. I do not cut back on salt while dieting. Generally, we lose water weight at the beginning of a diet and need salt. The steroids definitely give me a greater appetite. :smile:
  • jjquarters
    jjquarters Posts: 1
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    Hi Everyone,

    I am in the same boat as a lot of you. I was diagnosed with Addisons April 2011. I was really sick and lost 30 pounds in 3 months before being diagnosed. Since I have gained it all back plus 10-20 pounds. In January I started counting calories and working out 6-7 days a week. The first couple of weeks I saw weight loss but then after 4 weeks, the weight loss has come to a halt. I will gain 2 pounds and then lose 2 pounds. It is real frustrating!!!!! I am also on Hydrocort and crave salt terribly. It does give me some comfort that I am not alone with this struggle. I also have gained most of the weight around my stomach area. Some people say I need to eat more, most days I eat round 1000 calories after I exercise. I will keep a watch to see if anyone out there can give me some tips that will work to get that scale in a downward movement! Thank you!
  • evileen99
    evileen99 Posts: 1,564 Member
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    I have no personal experience with this, but one of my coworkers was on steroids for several years. She did manage to lose/control her weight, but it was hard. She had metabolic testing done at a hospital to know exactly what her BMR was and then was very strict with her calories and exercised like a fiend.
  • yurika975
    yurika975 Posts: 71 Member
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    I'm not on steroids so I can't offer help in that regard. However I was thinking that you would have to get tighter with your eating plan and structure your workouts. I was given the advice that I should try to workout as a man would. In other words don't be afraid of the heavier weights. Women have a fear of getting "bulky" but that will not happen with us as we don't have the testosterone that men do. What kind of workouts are you doing? Do you know your breakdown with your diet? Cals/protein/fat? I think starting there would benefit you greatly. It is said that abs are made in the kitchen. Even the fitness models on the magazines don't look like that year round! I think increasing your protein will keep you full and help support your workout efforts. Good luck to you.
  • bishbashbosh123
    bishbashbosh123 Posts: 1
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    Hi, I also have Addison's Disease and was recently diagnosed with hypothyroidism. I haven't had any problems with weight gain from medication from Addison's, however I have put weight on with hypothyroidism. Be careful not to cut too much salt out of your diet, although fludrocortisone is supposed to balance salt levels, it well never be as efficient as the genuine hormones. Get you blood pressure checked regularly, if it is low you need more salt! I have been trying to spread my meals and snacks out through the day as we have to be careful with blood sugar levels. Have you spoken with your endocrinologist recently? If you are losing weight, your medication (hydrocortisone) will probably need to be reduced. Hope this helps
  • Cranio97
    Cranio97 Posts: 2 Member
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    I too take steriods. I am on long term cortisone use as a result of a pituitary tumour that left me hypopituitary. I am finding it really hard to loose weight too. I loose weight and then if I become ill, I have to go up on my cortef and I gain it back again. It is really difficult, I know.
    Before my disease I was 105 pounds, now I'm struggling to get down from 200lbs. It has been really hard. My self image is shattered! I don't have any suggestions, I am hoping you can give me a few. I can only tell you that I understand your problem. I struggle with the round face, chin and spare tire around my waist.
    Take care!
  • ninerbuff
    ninerbuff Posts: 48,622 Member
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    I've had the pleasure of working with many people who have been on corticosteroid for several reasons. My honest response is that since it's a hormonal issue, then it will be much harder to lose and also to maintain once you get there. Unfortunately this is one of the side effects of corticosteroid treatment.
    Just be diligent. Keep up the regimen to help increase fitness and that in tern will help with overall health.

    A.C.E. Certified Personal/Group FitnessTrainer
    IDEA Fitness member
    Kickboxing Certified Instructor
    Been in fitness for 30 years and have studied kinesiology and nutrition
  • BeckyBee78
    BeckyBee78 Posts: 5
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    I am so happy to find this post! I have Addison's Disease and Type 1 Diabetes and am struggling to lose the last 30lbs of my baby weight gain. I think I need to be drinking more water... and cutting out the saltier snacks. I really do tend to crave a LOT of salt... especially when it is so hot out!
  • tsagartz
    tsagartz Posts: 1
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    So glad to find people in the same boat! I was just diagnosed with Addison's Disease about 3 months ago. I lost about 20lbs before I was diagnosed, and was at too low a weight for me to be comfortable with. However, I've easily regained that weight and extra, especially around my belly. I work out 5 times a week, and admittedly, could do better with my eating habits, but I continue to gain. I'm going to college soon, and I'm afraid the freshman 15 will turn into a freshman 50. Let's hope we can all beat the hydrocortisone weight gain!
  • crazygalsal
    crazygalsal Posts: 1
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    I too have Addison's Disease and Crohn's and am still 45 lbs overweight. I don't eat for days(fear of pain and lack of appette) eat very little on days I can and have diahrrea up to 20times a day and Still I can't lose weight. I am on 5mg to 20mg of hydrocortisone for Addison's and during Crohn's flare up I'm on 40 mg to 100mg of prednisone. My weight has also moved from my thighs and butt to my abdomen. I hope we can find an answer because it is really discouraging. My husband is divorcing me due to my health problems and I would like to have more confidence about my body. I am also in surgical menopause and on estro test because I'm only 39. I think I will try to work out like a man as one person commented. Other than that Im at a loss, but wanted to let others know we are not alone even if there are only a few of us.Thank you bishbashbosh1 for info on fludrocortisone. I am going to ask my endo why she hasn't considered this cause I have issues with low salt/ low potassium/low magnesium.
  • lilikinsz
    lilikinsz Posts: 1
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    I have ulcerative colitis and I have been on prednisone off and on for years. Right now I am on 28 mg. per day, down from 40 mg.
    I can only lower by 1 mg. per week because my adrenals are not kicking in. I have been on it this time for 18 months. I am moon faced with a buffalo hump around my neck collar. I have lost a little of the weight as I have lowered my dosage, but I think it's mostly due to the discipline of not eating and feeling hungry all the time. It takes almost a year after you stop to totally get rid of the bloat.
    I understand how demoralizing it is and wanted to share with the other readers. I gained a lot of comfort today from reading all the different remarks. I will try to be kinder to myself since I see no one is really loosing weight on the prednisone.
  • skinnylisi
    skinnylisi Posts: 1
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    I also have addison's disease and I take fludrocortisone and hydrocortisone. Last year my I told my endocrinologist that I dieted and exercised and wanted to lose weight but had a hard time. She lowered my hydrocortisone dosage and I lost a lot of weight, I was not hungry at all, but I was really tired and the skin on my face was very spotty, like sun spots. I saw my endocrinologist a year later and she put me back on my original dosage of hydrocortisone because of how tired I was, and I gained all the weight back. I do binge eat and prefer salty foods. I lose weight fast but I also gain weight fast. I don't really watch what I eat all the time, if I did I think that I would be succesful at losing weight.
  • mdtprof
    mdtprof Posts: 9 Member
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    I have been diagnosed with Addisons around 3 years ago. I gained 15 pounds over and above the 20 I wanted to lose, and that is only because of constant diligence with diet and exercise. The past several months I have been tracking 1500 calories per day, not really paying attention to what those calories were (other than lots of vegetables). I also have hypothyroidism for 10 years. On another site, I saw that people were having some success losing with a ketogenic/paleo diet. I am doing my own experiment with this to see if it works, keeping the calories the same but changing the content. It's so frustrating and no one understands the weight obsession, looking for an answer. I am on 20mg hydrocortisone and Florinef (0.1 I think, low dose). Sometimes I half the Florinef when my bp looks good and I am feeling well. I have suffered with a strange phenomenon, though. Every time I step into my hot tub, even if only for a few minutes, I wake up at2 am with fever, nausea, chills and shaking (addisons crisis symptoms). Dr cannot explain. Any ideas? Good to know I am not alone, thanks so much!
  • sammharley1
    sammharley1 Posts: 39 Member
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    I also have addisons. I gained SO much weight when I was first diagnosed - I even stopped taking hydro just because of vanity reasons. Ended up in hospital so much. But if youre on the correct dose, you shouldnt gain weight from them and it should be easy to lose weight too. If you cant, according to my endo, it means your dose is a bit too high. But dont take that from me as I wouldnt want to be responsible for you becoming ill from lowering your dose!

    HATE moonface though!

    I have no idea about your bath symptoms though - maybe your body just doesnt like the up and down bp.
  • sljohnson1207
    sljohnson1207 Posts: 818 Member
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    I have been diagnosed with Addisons around 3 years ago. I gained 15 pounds over and above the 20 I wanted to lose, and that is only because of constant diligence with diet and exercise. The past several months I have been tracking 1500 calories per day, not really paying attention to what those calories were (other than lots of vegetables). I also have hypothyroidism for 10 years. On another site, I saw that people were having some success losing with a ketogenic/paleo diet. I am doing my own experiment with this to see if it works, keeping the calories the same but changing the content. It's so frustrating and no one understands the weight obsession, looking for an answer. I am on 20mg hydrocortisone and Florinef (0.1 I think, low dose). Sometimes I half the Florinef when my bp looks good and I am feeling well. I have suffered with a strange phenomenon, though. Every time I step into my hot tub, even if only for a few minutes, I wake up at2 am with fever, nausea, chills and shaking (addisons crisis symptoms). Dr cannot explain. Any ideas? Good to know I am not alone, thanks so much!

    Maybe your hot tub is too hot for you and if you are already on the verge of having too low sodium levels and too high potassium levels, it's sending you over the edge into Addison's crisis? Ask your endo about that. It's not unheard of for hot tubs to exacerbate a multitude of health problems.

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